[This Transcript is Unedited]
Room 305A
Hubert Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201
Call to Order and Introductions - Mr. Bob Hungate, Chair
Quality Issues and Future Committee Activities - Workgroup and staff
Addressing Sensitive Issues; i.e. Personal Identifiers - Workgroup and staff
Quality Report Progress - Workgroup and staff
Agenda Item: Call to Order and Introductions
MR. HUNGATE: Welcome everybody.
We are a little short this morning, but, hopefully, the remaining people will appear.
And you need us to give our names -
REPORTER: Iµve got you.
MR. HUNGATE: Youµve got us all recorded, duly recorded.
I am Bob Hungate. I donµt know whether you know me or not.
MS. BELL: No. Iµm Patricia Bell. I work for the American Nurses Association.
MR. HUNGATE: Welcome.
MS. BELL: Thank you.
MR. HUNGATE: And does anyone else need an introduction?
DR. LUMPKIN: Iµm John Lumpkin, and I work for the Robert Wood Johnson Foundation.
DR. EDINGER: Iµm Stan Edinger. I work for AHRQ, and Iµm the lead staff to this committee.
MS. JACKSON: Debbie Jackson, national committee and staff.
MS. KANAAN: And Iµm Susan Kanaan.
SPEAKER: And I think Iµm the only member of this committee, am I right?
MR. HUNGATE: Well, Don Steinwach is the other member.
SPEAKER: Okay.
MR. HUNGATE: But you are the only one attending.
SPEAKER: Okay.
MR. HUNGATE: And I appreciate that. (Laughter).
MS. HOLMES: I am Julia Holmes. I am from NCHS.
MR. HUNGATE: Thank you, Julia.
Agenda Item: Quality Issues and Future Committee Activities
MR. HUNGATE: Okay. Well, the first agenda item is Quality Issues and Future Committee Activities, and I would like to segue off yesterdayµs personal health dimension discussion and start from that.
We had talked about that early in our own discussions, and I think an important task for us initially here is to make sure we have our own fix on what this workgroup is trying to do and how that fits with work in the other arts of the structure of the NCVHS, and I particularly appreciated yesterdayµs attention with the personal health dimension, because I think it lines right up what we need to do.
And Iµll start that discussion by trying to put my own view down as to what I think we should be doing, and then I have learned over time that I better listen carefully to what other people tell me, because theyµve usually got good information. I am inclined to be a little headstrong and believe that I am right, and so I may argue, but I donµt want to argue to the extent of stifling disagreement and discussion, because I have had more trouble with people who withheld information than I have had with those who argued for what they believed in. So that is model of behavior.
And in that sense, I have a model in my mind which says that we are trying to make some transitions. We are trying to transit from a cost-driven system to a quality-driven system. We are trying to transit from quality assurance to quality improvement, and those two kind of changes will enable us, I think, to improve population health by basically raising the level of performance of the system.
I have become, I suppose enamored is the term, with the study of chaos and how that works and the difference between hierarchical control and chaos management.
SPEAKER: I thought you hadnµt worked in government. (Laughter).
MR. HUNGATE: Well, I worked in a large corporation which was small when I began, and the hierarchical form broke down, although what happened - Hewlett Packard was the company, and, as we got bigger, more and more committees were formed to make the hierarchy work, and they slowed everything down, and the corporationµs responsiveness just slowed down, and so, you know, that methodology really didnµt work with a large functioning organization, which government is.
Healthcare is a huge activity, and you just canµt hierarchically manage it, although the professional society modalities are, to a degree, hierarchical, where, you know, there are consensus guidelines that are generated, which everybody is supposed to follow, but people make other judgments. So itµs - to me, that is the climate within which we are working on quality in trying to make the whole system work better.
My other comment in that is that - I call it health seeker, others might say patient or consumer - doesnµt have a strong voice in how the system works, and that is where the personal health dimension is critical. That is the piece that I think we need to focus on assuring is working in order for quality to be achieved.
My working definition of quality is meeting or exceeding expectations, and the expectations that are important are those of the health seeker, the customer of the procedure, whatever it is.
So that is the spectrum within which I think we work.
The valid expectations are the cornerstone, I think, of resolving the - if you will - accountability, malpractice tensions that are in the system that if expectations were more validly set in a good science base, there would be less room for the dueling experts that operate in the courtroom.
The process is a little random the way it is, but if you moved the information up earlier into a solider base, which wouldnµt erode under cross examination, which is what I would say a valid expectation would be, and, to me, that is a prospectively-stated, individually-described, risk-adjusted outcome.
And so I have chosen to say that risk-adjusted outcomes are what we ought to focus on as the simple mechanic of improving quality by establishing valid expectations for the system performance and individual case related to it.
That is enough monologue.
Now, letµs open that for discussion and put your comments on what I have said, tell me whether that is appropriate to what this group should do, whether we need to bound it further, how we adapt that to how this group should function in the structure as well of NCVHS, et cetera.
DR. LUMPKIN: I think I can - with certain caveats, in that the statement, the quality is meeting or exceeding the expectations of the patient, again, first of all, is the expectations of the patients need to be appropriately set.
One of the things that struck me in the late ?80s when I was doing some work with PURSA(?) in Egypt is that the expectations of patients coming to the hospital is that the person was going to die, and so you could get quality care, but it is not necessarily what we would consider to be acceptable care. So perhaps maybe the modification as quality is meeting or exceeding the expectations of the - I donµt want to say well-educated, but cognoscenti consumer, the informed consumer. Giving that as sort of a modification. So if we -
MR. HUNGATE: I accept that.
DR. LUMPKIN: So if we say quality is meeting or exceeding the expectations of the informed patient, then the next branch on that is to recognize that that is a very simple outcome, and I mentioned yesterday what is now becoming one of my - used to be one of my favorite quotes and now becoming one of my favorite quotes again, but one by Arthur C. Clarke, where he said that any sufficiently developed technology appears to be magic, and so the magic is that meeting or exceeding the expectations of the patient, and underneath that is a large amount of infrastructure that is required to get to that simple statement.
MR. HUNGATE: Absolutely.
DR. LUMPKIN: One key component of that has to be reported, because how does the patient know that their care has met or exceeded their expectations. It is elimination of variation that exists, variation of costs, variation of utilization services, variation in type of service system, whether based upon race and ethnicity. There is a whole host of things that sort of fit under that rubric of meeting or exceeding the expectations of the patient.
So given that, we are starting off with a very simple mission statement, that we understand the complexity of what is underneath.
That means that, for us, as a committee and a workgroup, what are the information and data implications of that?
And to one extent it is reporting, it is - let me rephrase that - one extent it is creating information and knowledge in the hierarchy of data information and knowledge. Information is data analysis. Knowledge is information with rules. So it is how we take this milieu of data and create information and knowledge that is useful. Some is useful in informing the patient and others are useful in giving feedback. The ultimate goal is to actually have knowledge available at the point of impact, so that that knowledge is delivered at the time - before the patient leaves the care encounter, so that you can optimize each individual care encounter, which helps you reduce variation.
MR. HUNGATE: It has to be both appropriate to that particular patient -
DR. LUMPKIN: Yes.
MR. HUNGATE: - which is where I use the term risk adjustment as the umbrella for the pieces that make that patient perhaps different from the one at the peak of the bell shape of the curve.
DR. LUMPKIN: Iµm not sure that that is the correct semantics.
MR. HUNGATE: Okay. Letµs work on it.
DR. LUMPKIN: And I say that with having been now chastised. My usual banter and this sort of thing is oh, that is just semantics. Letµs not worry about it. Go on. Betsy Humphries has reminded me that it is all about semantics. (Laughter).
So given that, the term risk adjustment really has come into being in talking about how you take retroactive - retrospective data and try to get some meaning about comparing facilities or entities.
MR. HUNGATE: There are two levels that I think thatµs important. One is the entity comparison. The other is the adjustment of expectations for the individual, based on their own characteristics.
The same data information should be siftable two ways, institutionally and to presenting characteristics of the patient.
DR. LUMPKIN: But that is in a retrospective fashion, and -
MR. HUNGATE: Well, even prospective.
DR. LUMPKIN: - and I think prospectively, we are really talking about customization of care.
MR. HUNGATE: Well, if customization of care is based on the same statistical information as retrospective risk adjustment, then we are in agreement. If they are just different views -
DR. LUMPKIN: But because it is not risk adjustment. It is risk assessment -
MR. HUNGATE: Just risk assessment.
DR. LUMPKIN: Yes, take the injury severity score. You can use it for risk adjustment -
MR. HUNGATE: Yes.
DR. LUMPKIN: - which is comparing one trauma center to another, based upon how severe the patients are -
MR. HUNGATE: Right.
DR. LUMPKIN: - but taking that score, adding in some physiological features, and I think the name of that then is the champion score, the injury - some other injury modified score. You can say this patient has a 75-percent risk of dying.
MR. HUNGATE: Yes.
DR. LUMPKIN: And, therefore, you need to be much more aggressive in resuscitation, thinking about placement and securing - versus this other one when you do the entry severity score, their risk of dying is one percent.
So probably maybe the best term is risk assessment.
MR. HUNGATE: Assessment.
DR. LUMPKIN: Yes. So you need to do both, risk assessment and risk adjustment.
MR. HUNGATE: You need to do both. Right.
MR. EDINGER: Well, donµt we also have to look to get the patient information about - probably not a data issue, but at least providing them the information on their own condition, so they can know what their assessing?
For example, if I go in for some sort of trauma procedure - well, probably for the MI assessment, but anyway, I go in for something. Letµs say diabetes management, and you give me the scores, probably will also be information about diabetes management to know, up front, what to expect, what to ask, what they are not giving me - and also some of the pain assessments tools, like the caps. Usually gets more satisfaction with physical characteristics of the facility than your actual treatment. I mean, no question - you know, do you think they did a good job in treating you? Do you think that - you know - that you got what you needed? That you were treated well, versus, you know, was it timely? Was the office clean? Was the nurse nice to you? Was the doctor nice to you? Itµs more in terms of environmental factors than actually - you know, I came out there. How do you think your treatment was? Well, I guess we came out of the emergency room and youµre alive. You probably say they did a good job on you, but maybe some more in-depth questions would get at the patientµs personal - you know, the consumer sends out this brochure to thousands of people. It some has some -
DR. LUMPKIN: I think the other piece to that is that an important part of this process has to be communication, and communication is vocabulary, syntax, as well as the context.
MR. HUNGATE: Julia, are you there again?
MS. HOLMES: Yes, I got cut off.
MR. HUNGATE: (Laughter). We were afraid that had happened, and so Gracia has reconnected you.
MS. HOLMES: Good. Thank you.
DR. LUMPKIN: And the problem with communicating risk is it is very difficult to get the context right, and so if you do an informed consent, 10 patients will come away from reading the informed consent where they actually list the risks of survival from the procedure with 10 different impressions of how risky that is, based upon, first of all, their ability to understand the statistics involved with the risk, and also what their willingness to accept risk is.
DR. EDINGER: And there is also the fact that how it is communicated to them that is, again, population specific. Different racial and ethnic groups, if you donµt put it in the right language and at the right level for them, they are not going to understand what that incredibly complicated form says sometimes. I mean, I have read some of these things. By the time you get done, youµre not really sure what it is they are really trying to tell you other than - you know - high risk of dying or you probably shouldnµt do the procedure, and I guess one of the things they would do is - if you were my physician, Iµd say, well, what do you think? Which is probably very common for patients.
DR. LUMPKIN: And the result is is that youµll see that - and this is some work that is coming out of Dartmouth, will be published in the near future looking at disparities at individual facilities, and one of the procedures that are being evaluated is the - doing knee surgery, replacement knee surgery, and there is a significant disparity in these what are called, you know, elective kind of procedures. In other words, this is something that is not life threatening, but it has to do with quality of life, and, you know, when you look at some of the institutions that are probably going to pop up as high rate of disparities, if someone goes up to someone who is African American from Mississippi and says I have this procedure that will fix your knee and itµs a new procedure. Youµre going to get one response, because that patient is going to be thinking Tuskegee. New procedure. They are experimenting on me.
Versus if you say to him I have a procedure. Iµve done it on 100 patients. They have all had good outcomes - or 95 percent of them have had outcomes, you are going to get a different response.
DR. EDINGER: Maybe said in your community, in like a black community or an Hispanic community -
DR. LUMPKIN: Right. Um-hum.
DR. EDINGER: - done people like you with a good outcome, that might make a difference, or, you know, if youµd like I - you know - I might refer you to some patients who had it and are willing to talk to you about it or who are in the same ethnic group as you, that might make a big difference.
DR. LUMPKIN: So that in some ways quality care is related to not only - it gets back to the issue of the informed patient and communicating in a way that the patient is able to and willing to understand, which means that, again, you have to customize that.
MR. HUNGATE: Right.
I want to try to make some distinction also between the terms quality and quality of care. Where I think of quality as a more result driven, quality of care is the process measure, because the caring is the process which must be managed, which must be efficient, and the reason I want to make the distinction comes back to my experience in the healthcare purchasing side where I think some of the things purchasers have done have tended to be dysfunctional in the long run by looking at pieces of the care process and saying we want it done this way. Leap Frog has done that by saying we want intensivists in the care situation in ICUs all the time.
Well, that is a dictation of process that needs a degree of involvement in the purchasing of healthcare that is different than the degree of involvement in the purchasing of automobiles, in the purchasing of most any other thing where the process management is left to the organization that supplies the product.
And I think that we have gotten ourselves into a more intensive administrative overlay because we have moved more into the process of healthcare from the purchasing side.
Now, that is, again, trying to think about what is the model that will lead us to the best efficiency.
My sense is that quality of care must be managed by the care-providing activity and internally must be measured, but Iµm not sure that the external accountability should be for quality of care. It should be for quality of result.
DR. LUMPKIN: Yes, let me sort of give an example that explains. Iµm not sure how to operationalize it, but when you look at some of the institutions that are giving diabetes care, and there are various standards, an institution can get a rating, letµs say, of 60-percent compliance, so that in evaluating having patients get timely examinations of the feet, 60 percent; having patients get routine eye exams, 60 percent; having patients get hemoglobin A-1-Cs, 60 percent. So their quality-of-care rating would be 60 percent.
But if you look at it on a patient-by-patient basis, less than five-percent of the patients get all of them done consistent with the guidelines. So you could say that the quality is five percent.
MR. HUNGATE: Yes, you could.
DR. LUMPKIN: Because the outcomes are none of those patients are actually getting quality care.
DR. EDINGER: And I guess the other issue is after they got the care, what happened to the patient? Some of them may have been given the wrong dosage of the hemoglobin A-1-C. They may not be given enough. They may not be taking their medication because they donµt want to take it or theyµre not monitoring themselves. So I guess thatµs a different - part of that issue, but different.
MR. HUNGATE: If you set up your model as being a physician-patient partnership, where the process of care is co-managed, some by the patient, some by the professional, you have to recognize a co-accountability.
To me, that is partly a risk-adjustment issue in terms of whether the communication system worked well, whether the patient understanding of the whys was adequate. I have this discomfort with the term compliance because it seems to me that compliance problems are failure to believe in the result. They are not - they are the patientµs fault in a way, but they are not, because the patient didnµt understand why it was important or they would have complied. Itµs that loop, and so -
DR. BELL: May I add something to that?
The other part of that loop is that the - if we are only talking about physicians as providers here, that the physician -
MR. HUNGATE: And itµs not fair to just do that. Itµs not correct.
DR. BELL: Well, I was going to say we are only looking at a small part of healthcare anyway, but the other part of that loop is that the physician or the provider did not work with or listen to the patient and their needs, not just that the patient didnµt understand, but that sort of back and forth.
MR. HUNGATE: And so I tend to argue in the direction of saying letµs look at the result and try to build good data on the results, and work on the accountability of both patient and provider for the improvement of those results, that what we are trying to do, I think, in quality measurement is make a system that maps from the top to the bottom, from the macro-measures to the individual measures, so that those things that get reporting publicly of accountability for the management of diabetes are the same thing that the patient must deal with in the same management, that - and that is what I - under the rubric of risk-adjusted outcome, hemoglobin A-1-C measure is a specific, an assessment I would accept.
Does that make sense? Am I on the right track in terms of where this group should work from otherµs senses?
If that is, in fact, what we should work on, then it seems to me that our work is to try to find out - and I think you almost have to get into very specific kind of places in order to understand - is to find out how well the system is doing in achieving that model of informed consent, if you will, management of a system, and then try to see what are the things we should change - recommend changing of - to improve them.
Am I on the right track or not? Talk more?
DR. LUMPKIN: Well, no, I think that the question is getting there. Now, where do we go from that, as the work - focus in on quality as it relates to health-information policy, just that primary task of the committee.
MR. HUNGATE: Yes. So health-information policy, in the way I am trying to articulate it, would focus on outcome measures, would say that a task is to make sure that the information system is adequate to make the outcomes of care be a stronger motivator than the cost of care.
Now, if I am - I am driving for a quality-driven system, and Iµm thinking one of our incentive problems is we do not have adequate results-based measures for individuals for the system. That is linking the quality to the accountability.
DR. EDINGER: Is that realistic, though, to think that cost is not going to be considered? I mean, if you want to put - I guess the simplest thing is the information systems in the hospital. First thing they want to know is what the heck is it going to do for me cost-wise as a hospital, versus the insurance company or somebody else saving money they are going to make this investment, having went through this once, and telling them that thereµs some global societal good that will come out of this, probably thatµs not going to make the CEO of the hospital say thatµs nice, but I think I will account for my bottom-line dollars at the end of the year.
If you make quality the major driving force, having experience and working in some of the Medicare stuff, usually, unless somebody tells you how to do something, everything is maybe a good idea, but somebody wants to know where is the money going to come from.
So I think they realize quality is important. Iµm not sure the cost isnµt - the money isnµt there, they are going to necessarily do it.
MR. HUNGATE: My experience with quality improvement has been that, in fact, the statement that quality costs less is a valid statement. So it is a matter of getting the incentives right, but you gotta get the accountability in order to get the assents, I think.
DR. LUMPKIN: I think that you have to take that concept of quality-costs-less on faith, and we are all true believers.
Sometimes phrasing it differently is as reducing variation.
MR. HUNGATE: Yes.
DR. LUMPKIN: And the only way to reduce variation is to achieve a level of quality, because that is where you have all of the - the cost is tied up.
MR. HUNGATE: Right.
DR. LUMPKIN: You know, the data is pretty clear that, you know, we have a significant variation in the cost of care, in the utilization of services, that that variation counts for as much as 30 percent of the Medicare expenditures, but that the - in the same areas where if you do region by region there is a variation - wide variation in utilization of services and costs, the variation in quality-of-care measures really donµt exist. So, in other words, they all meet the same quality-of-care guidelines.
So I think that we canµt ignore the issue of cost, but I think we need to just put it in the context that this is - you know - that if you focus in on reducing variation, improving quality, that cost savings are a result of that in the near future, given the chaotic nature of the healthcare system.
Where I have a problem with that assessment is that the focus right now on outcomes, and the reason why I have that is that one of my favorite science-fiction authors is a guy named Gordon Dickson, and he wrote a book called ·The Tactics of Mistake,º and regardless of what the story is it is sort of based on a fencing analogy, which is that you donµt win at fencing by one decisive move. Rather, it is a psychological move where you have your opponent get more and more off guard by what you are doing, and then when they create the opening, then you take the opening, but you have to create that opening, and the reason why that is an analogy is that poor quality, poor outcomes, you can have a poor quality of care and have a good outcome -
MR. HUNGATE: Yes, you can.
DR. LUMPKIN: - for the majority of patients, but if our ultimate goal is to have good quality for all the patients, then you have to pay attention also to the quality of care.
MR. HUNGATE: Yes, you do. Iµm not trying to argue that the system doesnµt have to pay attention to quality of care. That is not where I am trying to go, but I am trying to articulate that if we are going to take the patient view, quality of care is not what we want the patient to focus on. We donµt want their help in controlling quality of care, because they shouldnµt have to worry about that.
You know, if I am trying to work toward that view of the system, then I think Iµve gotta shift.
DR. LUMPKIN: Iµm going to push back on that one.
MR. HUNGATE: Fine.
DR. LUMPKIN: I want the system to reduce my risk of a bad outcome.
MR. HUNGATE: You bet.
DR. LUMPKIN: And I want to know whether or not the facility I am going to has just been lucky or they actually are good. So, for me, if I am a diabetic, the risk of me having a serious complication in my diabetes is more dependent upon not how many of their patients have amputations, but how many other patients actually get routine foot checks and eye checks and monitoring of their control.
So if Iµm going to pick a facility, I donµt want to pick it on the outcome measure. I ought to be picking it on the process measures, because that will tell me where my chances are best of having my personal outcome be good, because for an individual it is either zero or 100.
MR. HUNGATE: Let me pick up that and argue that the facility choice in chronic-care management is different than the facility choice in acute episodic management and that the presence of a chronic condition like diabetes is a clear risk factor for cardiac surgery for other things, and that if I am a diabetic, a choice that I may face is where to go for cardiac surgery. So thereµs two different kinds of decisions.
DR. LUMPKIN: Itµs a blended -
MR. HUNGATE: Itµs a blended -
DR. LUMPKIN: Because there are certain procedures for which you want to know the outcomes.
MR. HUNGATE: You want to know the outcomes.
DR. LUMPKIN: You know, if I am going to pick a cardiac surgeon, I donµt really want to know whether or not his - you know, how many knots have slipped on - I want to know what his survival rate is, so that there are certain procedures for which outcomes are the most appropriate measure, and perhaps what our goal is to be able to provide to the consumer, the patient, information in context; in other words, to focus in on those measures that are most important for making the right decision, and it goes back to meeting or exceeding the expectations of the informed patient. How do you meet or exceed? How do you make a choice on quality? It will be disease dependent. It will be related to that encounter dependent, and it may be an outcome measure that is important or it may be process measures that are most important.
DR. EDINGER: You also want another case? The surgery where the quality of life of the patient is - letµs say their surgery - the surgeon has great outcomes. Everybody survives, but some of the patients have poor quality of life that they - whatever the procedure is, they may be immobile. They may not have ability to get back to work in a certain specified period of time. That would be important to the patient, too, not just the - surviving the procedure.
DR. LUMPKIN: But thatµs outcome.
DR. EDINGER: Right. No, it is. Thatµs another part of the outcome - the survival rate. Itµs also your quality of life and I guess your expectations of what you got from the procedure.
DR. LUMPKIN: But I think what Iµm hearing is sort of an underlying theme here, and I donµt know - you know, weµd have to think about it to test it - is that outcomes are clearly more appropriate for the procedural -
DR. EDINGER: Acute, episodic.
DR. LUMPKIN: Well, saying acute, episodic, itµs really more procedural.
DR. EDINGER: Procedural.
DR. LUMPKIN: You know, itµs - for certain aspects of the procedure, there are things that you can do - if you have - an injury requires - acute episodic laceration, how the wound is taken care of before the actual suturing is done is probably one of the key outcomes of whether or not you are going to get a wound infection. So there are some process things that you want to know occur, but, by and large, procedurals, the best assessments are going to be outcome measures.
Whereas, chronic illness or any of those where you are dealing more with cognitive interventions, therapeutic management, itµs going to be more process that is going to be more important towards determining whether or not you are getting a good outcome.
DR. BELL: Please tell me if you donµt want me to say anything.
DR. LUMPKIN: Well, weµll tell you after we hear what you say. (Laughter).
DR. BELL: Okay. I guess one of the things that comes up is as I have heard the discussion going, it is very focused on the technical aspects of the care patients receive, and I think if you look at the research youµll find out that patients rate their hospital experiences by the nursing care they got, whether they were comfortable, whether they were comforted, whether people responded to them, talked to them, taught them, helped them understand and cope with their situation. I think that is where we really miss out when we only limit it to did the - you know, did you care for the wound well before.
I would suggest that maybe a lot of patients are was there someone there who understood and would hold my hand or explain to me what was going on or to do something like that, and I think we have in health services research is certainly ignored so much of the harder part to measure, but to the patient it is so critical, and that is how they are treated as human beings during their process.
And the same with the chronic disease is you can check their eyes. You can check their feet, but unless they have that support of staying with their diet, taking their medicines correctly, you know, da, da, da, da, da, their quality of life and their outcomes may be terribly effected by that piece.
MR. HUNGATE: I would bet that in management of chronic disease that if the psycho-social factors are sound that the ability to follow a regime also improves -
DR. BELL: Right.
MR. HUNGATE: - that there is a high correlation.
DR. BELL: Well, you know, you talked about the joint accountability between provider and patient, and if we only focus on the technical aspects of it - did Dr. So-and-So order such-and-such a test - that doesnµt recognize really that partnership where the patient has responsibilities, as long as we, as providers, have taken - give the information in a way that they can understand and use. How do you get that part? I mean, does this committee even consider that part?
DR. LUMPKIN: I think, you know, again, getting back to our charge, the issue is how do you measure it.
DR. BELL: Um-hum.
DR. LUMPKIN: More so than whether or not we think that is important, because, obviously, when you look at that - and itµs a very complex process, because there are some patients who the best outcome is holding their hand.
DR. BELL: Absolutely.
DR. LUMPKIN: And there are other patients that if you hold their hand, you are making - you know. I donµt know if anybody watches -
SPEAKER: Itµs the wrong move.
DR. LUMPKIN: Anybody watches ·Sex and the Cityº - (laughter) - there was the episode when - with the redheaded one when she delivered her baby, and Carrie was in the room, and the nurses started to say, ·Oh, you know, such - · and she would shake her head, and Carrie said, ·Please stop.º Because every patient is different, and, you know, there is a need to have a feel for what is helping and what is not helping. So itµs harder to quantify, because it is not was your hand held. Itµs really those soft factors, which can be really approximated based upon post-service surveys.
DR. EDINGER: Thatµs probably true, because I get my care at the Navy hospital, and I guess Iµll compare two experiences. The outcome is good in both cases.
One experience I went in they apparently mistakenly thought I was a personal friend of the president, because his physician was coming down to do his thing, you know, his once-a-week training, and as soon as he came to see me, I must be the presidentµs personal friend or something, and I was in there with almost a very minor procedure, was treated so royally, I felt like I was in a major hotel. My perception of the quality of care of the hospital procedures would have been - was fantastic, you know. It was like it was a resort hotel. People were waking me up in the middle of the night, you know, do you want anything, and, you know, it was like, leave me alone.
The second time I was in, the outcome was just as good, but at night nobody was around, you know. If you wanted a glass of water, you probably had to get yourself up and get it yourself. The resident was sleeping, you know. The nurses were off talking.
The outcome was the same. My perception would have been very different. The second time I would probably have complained this is crumby. The first time I would have said, my God. This is the greatest hospital Iµve ever been in in my life. You know - come back here for a toenail or something.
DR. LUMPKIN: Only because of the order in which you had -
DR. EDINGER: Right.
DR. LUMPKIN: - the encounters.
DR. EDINGER: Right. The other way around -
DR. LUMPKIN: The other way around, your first one probably would have been fine, because that would have been - met your expectations. (Laughter).
DR. EDINGER: Right. My God, theyµve improved 100,000 percent. (Laughter).
DR. BELL: Yes, yes.
DR. EDINGER: Thatµs probably true.
DR. BELL: Well, I mean, there are some nurses that have done some research. I supervise a scientific site at the National Database of Nursing Quality Indicators, and we have 400 - participating now, but in our pilot phase, we did - two of our investigators did some work up in a rural area of Virginia, and it is a veteran community to D.C., and the expectations between the D.C. commuters who were a much more informed, educated group was entirely different from the native people from in the rural area. Native people in the rural area thought if they got out alive they were fine, and then it was wonderful care, and, you know, the commuting people were like, you know, unless I was at the six-star hotel, it wasnµt good.
They also had deeper - we always function on the assumption that the consumer knows what they should get, and I think that is not true, certainly, from a nursing perspective, and, therefore, I think a lot of people donµt get what they should get from a nursing perspective, but also from a medical perspective in many ways.
MR. HUNGATE: Letµs see if I can summarize where we are so far.
I think weµve got a separation between procedural and chronic, in terms of the nature of the quality measures that are important. Both require the focus in personal health dimension in order to pick up functional status, in order to pick up opinions about whether the care was appropriate, that you need that personal health dimension in order to get that.
I would add to that that there is the setting of patient expectations, and there is the setting of professional expectations in terms of where is the standard, where is the bar of performance.
It has been my perception that an awful lot of professional system doesnµt have a valid set of comparative measures for how well it does in comparison to others, but people donµt always know how well they are doing in comparison to others.
My experience with quality improvement is that knowing where you stand is a critical parameter for change, so that if I want to shift to a quality-improvement model, I have to think on the personal-health dimension, but have that have a cross feed into the professional information system, which is consistent with the way in which that will be managed.
Does that transformation make sense? Comment?
DR. LUMPKIN: A couple of areas where I think we need to be a little bit more precise, one is that the difference between procedure and chronic. I donµt think chronic is the right alternative in that - I canµt think of one right now, but, you know, if we just kind of hold it as a place holder, because we are really talking about more of the - a good chunk of interventions for which there is a close association between the procedure that is done and the actual outcome.
MR. HUNGATE: The timing aspect where the outcome is close to the procedure as opposed to -
DR. LUMPKIN: Well, itµs not just time, but, for instance, cardiac calf(?). Thatµs a procedure, but it is all part of - you know, when you get a cardia calf, you want to know how good the calf - the guy who is doing the calf is, and thatµs - you want to know how many of his patients have successful calves, where they actually get the - you know - the vessels that you want to see seen and donµt bleed out.
But there are other things that are even short term that are not interventional, but they are not chronic, and so that is just one thing that we just need to think a little bit about a better term.
The second is comparisons, and I think we have to be very careful about comparisons, and Iµve got actually a slide that I can show you that sort of gets that - and that probably will work better if I do it this way. Okay. If you can see this screen, this is from a paper that was just published by Siegel(?) in JAMA, and what it is is changes in adequacy of hemo-dialysis dose, where, at the bottom, this is the rate. A hundred percent is whether or not it meets all the guidelines, and if you look over time from the early 1990s, all the way up ?til 2000, the study was really done to talk about racial and ethnic differences, and for there the importance is is that a rising tide floats all boats. There is still a gap.
MR. HUNGATE: There is still a gap, but they are closer.
DR. LUMPKIN: But if the standard - if people were doing as well as their peers here, they werenµt doing anywhere close to where the standard ought to be.
MR. HUNGATE: Yes, I agree with that.
DR. LUMPKIN: And so we just have to make sure that there is some concept not only of doing equally as well, you know, measuring, but also that, in many areas there are optimal levels that people should be achieving, striving for, where that is really the level of quality.
MR. HUNGATE: We couldnµt agree more.
DR. LUMPKIN: Okay.
MR. HUNGATE: That my sense of why quality improvement works is that when there is the availability of comparative information, the leaders become recognized, and the leaders are the ones that are closer to the ideal, and that creates tension for others to rise, and thatµs why the boats all go up.
DR. LUMPKIN: Yes.
MR. HUNGATE: But that is the cause-and-effect part of it, and so that would say that our task is to make that power work with information, make that improvement work.
DR. LUMPKIN: Iµm not sure that that is necessarily - the competition will make those who are below the leaders - and this is only if you do reporting - want to come up to the leaders.
MR. HUNGATE: Right.
DR. LUMPKIN: That doesnµt necessarily mean what drives the leaders to -
MR. HUNGATE: Itµs a mixture of competition and professional pride is my sense, that we are - and the patient drive. You know, the patient expectation ought to be for the top-level performance, the whole patient-drive wish. You have to build the tension of information between the professional control system and the population, tension for improvement.
DR. LUMPKIN: Well, it makes a difference in how you report the data. Do you report the data that Hopkins is one standard deviation above the norm in providing appropriate - and Iµm making this up -
MR. HUNGATE: I understand.
DR. LUMPKIN: - the norm in providing appropriate dose for dialysis or do you say that they have reached 95-percent of the designated level?
DR. EDINGER: Maybe you want to provide both, because one compares it with others, and the other compares it to what they should be doing. Probably want to do both.
MR. HUNGATE: Thatµs my sense, too.
DR. LUMPKIN: Okay. Then we are all on the same page.
MR. HUNGATE: Okay.
DR. LUMPKIN: Okay.
DR. EDINGER: I guess the other question - well, itµs not really - I mean, itµs not really a data issue, but then you get the issue of access to care. People are - how many people can go to Hopkins versus Greater Southeast or something? I mean, you may not really want to go through the same procedure. You may not have a choice, though. You may not be able to commute to Hopkins, afford Hopkins or something of this sort.
MR. HUNGATE: Well, a lot of very small hospitals closed because people believed that they werenµt getting the result that they needed there, and so they went someplace else.
DR. LUMPKIN: As a result, there is a small town in Southern Illinois called Cairo where the one hospital that was there closed. The nearest hospital that has OB services is about 100 miles away, and, you know, you are talking about the Heartland.
MR. HUNGATE: Right.
DR. LUMPKIN: So there are significant ramifications to access. The competitive model doesnµt work completely in healthcare. What do you do when your local hospital - you know, people start getting the impression that itµs not good. The local hospital then begins to compete. They improve their quality, but there is no way to measure it, and so people continue not to go there.
DR. EDINGER: Well, in information technology, thereµs going to be pressure on the local hospitals to put IT in, and it is going to be very difficult. I mean, probably more difficult than people - like in my researcherµs thing, because in a little, small hospital, you canµt parallel test the system. You donµt have staffing to probably do your regular work, and if expectation is that youµll have a computerized patient order-entry system with bar coding and everything, it is going to cost those little hospitals a lot of money, and not just in terms of the toys, but in terms of putting it into implementation, and if they donµt have it, people may not want to go there.
DR. LUMPKIN: Or might argue that because they donµt have any legacy systems they can -
DR. EDINGER: They can do a better job. (Laughter).
MR. HUNGATE: They can do more quickly what -
DR. LUMPKIN: Itµs like many of the - you know - the developing countries that have skipped a whole level of technology and communications.
DR. EDINGER: And theyµre better off.
DR. LUMPKIN: Because, you know, they go completely wireless without going through the whole wired infrastructure.
MR. HUNGATE: I think the solider the model of where the system needs to get to the easier it will be for entrepreneurs to create systems that serve those places, that the less stable that is the harder it is for other money to move in to meet voids.
DR. EDINGER: Well, I guess from my point of view, though, probably that is the issue. We havenµt provided data to the policymakers to make those decisions, and to the entrepreneurs and to the local providers. I mean, actually, itµs a nice discussion, but weµre really probably not in the place where we can influence directly some of those issues, but we can certainly provide the information that can change those issues.
MR. HUNGATE: I think getting the accountability agenda for quality to the right focus for stimulation of improvement is a doable objective for the workgroup, through modeling, in particular, fairly narrow spots. At least that, to me, is where our leverage is. We canµt probably change all the incentives, but I think we can talk about where the incentives are inappropriate.
DR. LUMPKIN: Well, here, I think it is important for us to bite off what we can chew.
MR. HUNGATE: I do, too.
DR. LUMPKIN: And given the resources of the committee, what aspect of this issue do we want to address, given the fact that there are three members of whom mostly have day jobs?
DR. EDINGER: Yes, I have the benefit of being retired. (Laughter).
DR. LUMPKIN: Well, Iµm retired, too, but from a government job. So I still have to work. (Laughter).
DR. EDINGER: I guess - some of this will probably overlap, but other committees, some of the disparities in population are basically overlaps, some of the - IT stuff, some of the other committees. I guess the issue, too, is what do we do versus what they do and what do we do together that we take the lead on versus what they might take the lead on?
MR. HUNGATE: To me, there is no other place where the accountability agenda fits.
MR. ORTIZ: Bob and John, can you guys hear me?
SPEAKER: Yes.
SPEAKER: Who just joined us?
SPEAKER: Eduardo.
MR. ORTIZ: This is Eduardo. Iµve been on for a little while, but Iµm not going to be able to join you physically. I had an auto problem this morning. So Iµm now at my office calling you on a conference call.
SPEAKER: Great. Welcome.
SPEAKER: Welcome.
SPEAKER: See, if you had data on the quality of your car, you might not have chosen the car you had. (Laughter).
SPEAKER: Either that or you couldnµt -
MR. ORTIZ: - the auto mechanic shop that worked on it last week - (laughter) - but anyway.
SPEAKER: Ouch.
MS. HOLMES: I thought that the purpose of the workshop on quality, in terms of exactly what our essential mission is and what we can do, is to make recommendations as to what needs to be done with respect to the availability of good data to report on quality, and I wondered how that fits into this conversation.
DR. LUMPKIN: I think that is where I was leaning towards, which is Iµm not sure that the accountability agenda is ours. Rather, I think that identifying ways that we can make recommendations to get the data that allows - that feeds into that.
MS. HOLMES: Yes. I tend to agree, the data to support, whether we are talking about project measures, outcome measures for the ultimate purpose of accountability.
DR. LUMPKIN: I think in addition, though - and, again, you know, in the long term, the issue becomes moot, but in the short term, there is an incredible cost for measuring quality, for capturing the data that is used in even HEDIS, and someone I used to work with with Blue Cross/Blue Shield in Illinois used to claim that every HEDIS measure cost them $750,000 to collect the data throughout their health plan. Now, I donµt know if that was for the measurement set or whatever, but, still, you know, there is a cost associated with accountability.
As we move forward into an environment, if we make recommendations that build off of the 837, the cost of that data collection should drop dramatically.
If we make recommendations that help populate the 837, again, it becomes the cost of doing business, because we build off administrative data.
As we see progress going forward with the electronic health record, again, those costs should be dramatically reduced, because collecting data for accountability becomes a byproduct of doing the standard service delivery.
MR. HUNGATE: The tenant of quality improvement would be that all the data that you collect for external measurement is a byproduct of what you collect for improvement. In other words, if we have a quality-improvement method working, the external assessment information should be very cheap, should be easy to achieve, and that is part of where I am coming from in saying quality costs less, that if you get the system working right, which means electronic collection of the information, then it is offshoot information.
DR. EDINGER: Having done regulation justification, that is one of the ways you do it, usually. You save days out and then youµre building on existing data systems and not collecting new requirements that arenµt already in place. If you are in a hospital, you say, theyµre already - you arenµt always as well at doing this anyway, because of X, Y and Z, and now youµre just collecting it for your own purposes.
The only problem is that itµs going to cost to put X in place in the first place, and it gets to the argument as of what point and to what cost you look at putting X in.
If you put the IT system in the rural hospital, it is going to cost money to do it. Once itµs in there, the collection of data will be much cheaper and easier and probably measurement of quality will be better, the potential for it, but I guess the question is who pays for putting it in there in the first place.
There is a cost associated with my - I donµt have a system or I donµt have a mechanism - itµs not already being done, and to collect new data, it is going to cost me.
MR. HUNGATE: Well, I am trying to focus also in a forward-looking way, saying that we are going to think about the personal-health dimension and how that meshes across the electronic health record, NHII system in such a way that we facilitate quality improvement to, in effect, as you used the term, raise all books.
DR. EDINGER: Maybe we should look at it -
MR. HUNGATE: And that is what we are trying to do, but our agenda is getting that information to be not expensive, but cheap by facilitating the right evolution of the pieces of the system.
DR. EDINGER: Maybe what we should do, though, is our argument should be that here is what is needed if you put a system in place thatµll make the system more cost effective and derive better data, rather than getting into the argument that we are saving money by doing X, Y and Z in the first place, because we are really not doing that. We are saying if you have an NII system in place, here are the data elements that would make it better to collect and get more accurate information on the individual level of quality of care, once you have that system in place, which makes it an easier argument than that - a more global approach, that here is everything you need to do to measure quality.
MS. JANES: Are we talking about NHII or are we talking about the personal health dimension, which is just one -
MR. HUNGATE: As pieces, I think a little bit weµre reflecting on both.
MR. ORTIZ: This is Eduardo. I just want to make a comment here. Let me know if you canµt hear me okay.
With your selection, now, a couple of things are going on here that you may want to know about, and it sounds like it may play into all this stuff, that there are three or four national efforts ongoing right now. One of them is one that Art is involved with, CMS and a Leap-Frog group called the National Ambulatory Care Patient Safety Group, and it is working on ruling out some of this Leap-Frog stuff, the fourth leap on e-prescribing and lab results and some alerts and reminders, and as part of that process, we are putting together some quality indicators specifically that are very evidence-based, and so we were going through all this stuff, United States Preventive Services Task Force, the HEDIS measures, everything that is out there and pulling out the stuff that, one, is really, really backed by good, solid evidence and is very non-controversial, so that, therefore, you are not testing the actual recommendation, you are looking at other issues, because we donµt want anything that is controversial, plus, something that is - that you can get to that is basically in the current systems and/or with certain electronic systems that are pretty small, minor, you know, not super sophisticated, can you get this data. So there are some things that you want to collect, but right now itµs not flexible.
So what we are looking at is rolling it out in several phases, so kind of phase one is the 10, 15, 20 things right now that are good measures of high quality and you can capture the data.
But the thing I think interesting is that there are other ongoing efforts. There is a big project that CMS is sponsoring called DOQIT, Doctorµs Office Quality IT Project, where we are going to be rolling this stuff out to thousands and thousands of physician offices across the country, and, once again, we are working with them to try and develop similar measures across the board.
Then there is this project called Bridges to Excellence, which is kind of an employer-sponsored thing with GE, Raytheon and Verizon, where they are going to be doing some stuff in terms of reimbursing docs for improved quality at a differential level, and we are working with them as well.
And then there is also an issue with the VA Medical Center that they are rolling out their business system out into the public domain and want to put some of these things out there and test it out, and what we are doing is I am kind of working across all four of these systems to try and develop the same set of measures, so that everybody is doing it consistently, looking at the best evidence-based measures, things that you can capture, things that you should be capturing. Most of them are clinical-quality indicators, but we are also putting in some IT-quality indicators in terms of do you have certain things in place, so, for example, electronic prescribing with a certain basic level of decision support.
So this is kind of going on and we are trying to do - bridge it, so that we donµt end up with four or five different national initiatives and they are all kind of using different measures. We are trying to do it consistently across the board.
And so I just want to make sure, let you guys know that that is going on, and it may be something that could help inform the NCVHS and maybe something at some point that you may want to bring people in to talk about this.
MS. JANES: Eduardo, did I hear you correctly that you said these look across a broad range of both clinical and IT measures? Because at one point you were talking about Leap Frog, and I always think of Leap Frog as being specifically, at least at this point, looking at issues of patient safety.
MR. ORTIZ: In general, right now, most of it is clinical measures. Most of it is safety/quality of care, but we are also looking at putting in just a handful of kind of IT measures as well, in terms of kind of looking, in terms of do you have electronic prescribing in place, something like that. I mean, just some core things, things that we know - once again, trying to focus on things that arenµt controversial. Like we know that e-prescribing improves patient safety in terms of drug interactions, dose checking, allergy checking. So things like that.
So we are not trying to make it where it is very difficult to cheat this. We want to make sure that we are using the right measures, and it is something that is supposed to be scalable.
We are not saying that this is going to be it. What we are looking at is kind of we are talking about it as in waves. Like the first wave might have 15 or 20 measures, but then there is a second wave that once you can get the first wave done, you would like to add in because they are important measures, they are things you would like to capture, but either right now we donµt want to ask them to do it because the data is just not readily available, it would be too difficult. You might have to go in and do, you know, chart reviews and things like that, which isnµt feasible for these types of projects.
So, in general, we are still looking at clinical measures, but we do want to put in a few IT measures that we think are important as well.
But I think, once again, the main message is that we are trying to - you know - consistency, which I think would be really nice, because, I mean, imagine if youµve got this Bridges to Excellence, and the DOQIT project and the Leap Frog, TMS, ARK(?) Ambulatory Care thing, and the VA thing, and we all come up with similar measures, and even we are also looking at not just measures, but trying to provide some physician support. It would be very cool to be able to do this kind of nationally and consistency, and then we could get some really good data out of it.
DR. EDINGER: Eduardo, if you are looking for non-controversial, you might want to think about the project of paying more for improved quality. That has been up before, and that can sometimes lead to some very unintended results of people wanting to know why you are paying for less quality. That may not be as non-controversial as you might think.
MR. ORTIZ: No, Iµm talking about - what Iµm talking about controversially is not the programs. Iµm talking about the measures that we are using.
DR. EDINGER: Okay.
MR. ORTIZ: So, I mean, you know, the super-simple example, you know, itµs more than this, but just making sure you are picking something like, you know, aspirin use in patients with MI, something that. You know, people arenµt going to come back and say, well, wait a minute. I donµt agree with that, you know, because thereµs a lot of things out there, a lot of the measures that HEDIS has and a lot of other things are not really that evidence-based or could be controversial.
We donµt want to be testing the actual measure itself, whether people agree with it or not. We want to test - you know, we want to put in good measures and we want to test the systems and their improvement efforts, and thatµs the thing. I donµt want people saying, well, we didnµt follow it, because we just donµt agree with this.
So that is what I mean by evidence-based. Iµm talking about the measures, not the program itself. The program may be controversial. I donµt know.
MR. HUNGATE: I am a little familiar with the Bridges to Excellence Program. We had a presentation at a group insurance commission in Massachusetts, and it does do some differential payment, based on quality, and the underlying part of that, I think, is pretty good.
MR. ORTIZ: Yes, I mean, it is happening. The Bridges thing is rolling out, and DOQIT, which is kind of like a Bridges with CMS, which will actually be even bigger, and, in fact, we are looking at rolling out. Right now, it is an issue looking at five states and at least maybe 200 physician practices in each state, but, now, there is - people are interested in rolling it out even bigger than five states, really nationally.
So both of those are happening, and part of that is a differential reimbursement. So itµs already supposedly accepted, and people are buying into it and doing it.
MR. HUNGATE: Eduardo, how do you see the role of this workgroup in comparison to what ARC should do?
MR. ORTIZ: Iµm not sure now, but I was listening - I think it was John earlier, and - Iµm sorry I joined you guys late, but that is what I was hoping that we could try and figure out is what - really what is the role of this quality workgroup within all the efforts that are ongoing, you know.
I mean, there are a lot of things going on nationally. So we donµt want to be just kind of recreating the wheel and being redundant. Although - but I do think there is a role for us, and I think what John had said was, I think, a good start in terms of, you know, trying to determine what some of these measures are and things like that, and maybe taking a leadership role, but Iµm not sure, in terms of how best to interact with this, and that is kind of one of the things that Iµm hoping we can get out of this, and I - you know - Iµm still fairly a novice to this MCVHS process as well. So I donµt know if I have the answers.
I just want to make sure you know whatµs going on there, so we can figure out what we can do, and it is also what is reasonable to do, and, as John said, we all have other jobs, and, you know, weµve got resource limitations. So what is it that we can really do where we can leave our mark and make a significant, substantial contribution, but yet not just be doing what other people are doing? So where do we fit in in this whole picture? And Iµm not sure what the answer is. I think we do have a role. Iµm just not sure. So I was hoping you guys could figure that out and let me know.
MR. HUNGATE: Thank you.
We all have a similar dilemma, I think in the sense of nailing down a role that is doable and valuable in the time frame that is allowed.
MS. JANES: Let me ask one quick question about - I apologize for coming in late, and you may have talked about this, but I am assuming that we are talking - we are looking forward at this point in talking about what we would do sort of building on this report that we have been working on. We are now talking about going back and revisiting - because the report really does, it sort of looks across where quality measurement is now, and then looks across the data systems. So it draws that grid and says, okay, here are the blank spots.
MR. HUNGATE: Right.
MS. JANES: Which I think is probably the most straight-forward definition of this workgroup that one could take, and that is weµll follow the sort of community as they draft current approaches to quality assessment, and then weµll take the task of then looking across data systems and trying to determine whether we have - that is probably the most straightforward, really.
MR. HUNGATE: The mind set that I bring to it - let me try to articulate it from the standpoint of the advice to HHS, health statistics. I have the feeling that the agenda has shifted more to the payment side, and that we havenµt always done the job of worrying about the beneficiary in the quality sense as much as we need to, and so I am trying to focus on that part of it and say what is it we need to do in the health-statistics information that makes the consumer, patient, health seeker have a stronger voice in the process of quality? To me, that is a role that might be appropriately assigned here, which ties to the personal health dimension, I believe.
DR. EDINGER: If you probably look at it that way, then the work that Eduardo is talking about might feed into this. You could probably review it in a sense and recommend gaps or additions or suggestions in the sense to this kind of an effort and how that fits into the broader picture of providing the patient with the information they need.
MR. HUNGATE: My experience on the employer side - this relates to my current activity at group insurance - is that we tend to think about the value of the money we spend, what we got for our money. We donµt tend to focus on those things that help people individually manage better within that context. HEDIS has a set of measurements. It is not useful to individuals. You are as helpful to employers. You gave them a reason to do this versus that, but it has not helped people very much.
DR. LUMPKIN: Agreeing with that, but still trying to put that within context of what we do, because that is, in fact, the mission of the foundation for accountability is to what extent can we take that perspective and use that to address issues related to information - health-information policy in the nation, recommendations to the Secretary. And I think that is - you know, I keep on coming back to that, because I think that that allows us to try to put the task into an area that we can actually get our arms around.
MR. HUNGATE: How do we articulate that? I agree with that, per se, but how do we state it as a mission statement?
DR. LUMPKIN: I think something along the lines that the workgroup believes that the most important, yet underdeveloped aspect of reporting is the quality measurement in reporting that is encompassed within the personal health dimension.
MR. HUNGATE: Is encompassed within the personal health dimension, is the way -
DR. LUMPKIN: Right. And that part of that would be, then, as we are engaged in the work of the NHII workgroup -
MR. HUNGATE: Yes.
DR. LUMPKIN: - to see if there are projects that feed off of that or feed into the efforts there to more clearly define the personal health dimension.
MS. JANES: Would you see this as the next task at hand or do you see this as a larger issue, something that might be encompassed in the mission statement?
I guess - let me jump in and say where I see that. I see that as perhaps the task at hand. I guess I would be a little less sure of how to view that if we basically made that the mantra under which the workgroup will proceed over the longer term.
MR. HUNGATE: Yes.
MS. JANES: That we would - since the personal-health dimension is something that is being discussed at this point, that having completed this more general review we are ready for a next task and the next task we choose for ourself is to follow what is being recommended out of NHII around the personal-health dimension, and perhaps we have put together a report that would speak to that. With the assumption, then, we would then go on to something else. Is that what you are suggesting?
I almost get the feeling that see it as a much larger issue and that that is an issue which we should embrace as something that we would work around with a variety of different products over, say, the next couple of years, and then I guess I would wonder how we would do that.
MR. HUNGATE: Iµm still searching. I see a large agenda, but I am very fearful that it is too large an agenda for the workgroup, that it is inappropriate for the workgroup, my understanding, and that is where I want to push back, that says, okay. Well, come and do the work, as opposed to what could we do that was idealistically desired, and that may mean that we take a sequential series of things that all work in a particular direction where I think we are trying to go. I mean, I donµt sense disagreement with that general direction.
DR. LUMPKIN: Well, I think, to some extent, there will be work that will come to us. So, you know, I think the work itself cannot completely - there are issues that ARC may want to bring to us. There are issues that may get vetted through the Quality Forum that ultimately may need to go through a FACA(?) committee, which we would serve that function.
But we are focusing in on the person. There are a number of things that we can look at. One, I think, is patient satisfaction - that is not well described. There are a number of different approaches to it. The issue is is there some way that we can help bring some consistency, rationality to that process, particularly since there are a certain group of patients who probably are over-surveyed. You know, if youµve got diabetes, heart disease and are in a health plan, you are probably going to get three or four different surveys. Can we look at some way of bringing some rationality to that process?
MR. HUNGATE: One of the recommendations of this report is to try to make surveys more consistent -
MR. ORTIZ: This is Eduardo again.
I guess - let me - I was going to throw out something, and it may be totally inappropriate or unfeasible, but Iµll throw this out and see what you guys think.
I am trying to think of some concrete things we could do, because I like to be concrete and be very outcomes-oriented. One of the things I was just writing down as I was thinking is, you know, with our NHII workgroup, we do a lot of hearings, and so I am thinking in terms of a hearing could we bring in some people? So what about the idea of bringing in - you know, having a day of hearings on ongoing initiatives to improve quality through the use of IT? So some of this stuff I talked about, some other efforts going on, whether we have one or two panels, you know, four people apiece, and then, you know, get input from all these panels, all these national initiatives that are going on.
Then I would see us maybe taking a leadership role in making recommendations in providing awareness of this stuff to the Secretary, because he doesnµt know that all this stuff is going on. We could weigh in in terms of what some of the measures should be. We could weigh in on things like what type of IT infrastructure is needed to achieve these things. We could identify gaps. For example, maybe the personal-health dimension has been kind of left off by some of these national initiatives or people havenµt really been focusing enough on satisfaction or functional measures.
What do you guys think of that being something concrete that we could accomplish this year?
MR. HUNGATE: Iµm favorably disposed toward that.
My sense is that the less-heard voice is that of the beneficiary, patient, health seeker, that that focuses around the personal-health dimension, that the prior recommendations for functional-health status as an important gap in information also fit there, so that by keeping that personal-health dimension focus, which is the beneficiary focus to our work, and looking at things essentially with the test of how useful is this to the patient in setting appropriate expectations -
MR. ORTIZ: And one of the things I see then is if we had, letµs say, these hearings, since we are the ones that convene these hearings and invite people to participate, typically, like I might just invite a lot of these people who I know are doing these national things and I neglect to bring in maybe the consumer perspective, so that is something I think where we could really contribute is make sure that that stakeholder is represented, and then that not only helps in terms of informing the NCVHS, but will also inform these other people - these other groups that are doing these initiatives that may have not thought about this perspective.
DR. EDINGER: I was just thinking, though, if we are doing the information-technology part, wouldnµt that be more the NHII committee and the survey part and the consumer perspective somebodyµs turf war, but maybe jointly at least more our perspective, and we might want to share the - sort of the division of work between the two committees or maybe jointly between the two, so they donµt overlap each other. Iµm sure they are probably interested in what is going on with some of these initiatives in the department as well as this group is.
DR. LUMPKIN: Well, we have met the enemy and they is us. I think there is pretty close to -
DR. EDINGER: We are loaded up with hearings.
DR. LUMPKIN: Thereµs at least a two-thirds overlap between their membership and our membership.
MR. ORTIZ: Plus, I think that even though itµs true that they do overlap, I think the focus of - if we did these special hearings, the focus would be on the quality piece, not the IC piece. The IC piece is just the tool that we are looking at because we are the NCVHS, but we really want our focus on quality. That would be the major thing. The IT, it would be an important component of it, but that would not be the driving force for the hearings.
DR. EDINGER: What do you see as the consumer part? Thatµs usually a very difficult problem, bringing people who are on the consumer end who actually understand the issue well enough to articulate what their needs are.
I mean, all of us as consumers have our own descriptions, but if youµre talking about ARC or youµre talking about fact or something or -
DR. LUMPKIN: Yes, I think those. I think that in the consumer piece, you know, might even include purchasers in that, because they want to be able to provide that information, particularly the larger purchasers where their employees actually have choices and they want to assist their employees in making choices. So OPM might be one.
DR. EDINGER: GM or something.
DR. LUMPKIN: Yes, GM, maybe. Maybe even auto workers, AFL-CIO.
MS. JANES: I agree, John. I mean, one of the things that we have always heard is that - struggled with is with the large purchasers. This is, at least with the perception - at least from CDCµs point of view - is the perception that many of the benefits departments are more oriented toward issues of satisfaction in sort of keeping their workforce happy than what we have sometimes viewed as a more rigorous definition of quality, but, certainly, that purchaser perspective, I think, could give us some insights on issues of satisfaction, and, yet, my one problem with particularly organizing panels around consumers is is that it is very hard to raise the discussion above the level of the anecdotal, which, you know, is interesting and can be - you know - touching, et cetera, et cetera, but it tends to be hard to sort of then massage into some sort of a report.
Whereas, I think the purchaser tends to rise - you know, they view things at a population-based and it tends to sort of pull you away from that let-me-tell-you-my-story approach.
MR. ORTIZ: And the thing, too - this is Eduardo again. I think the purchasers is a great idea. I think maybe a representative from a big group like the OARP could be good.
I think it would be nice to get an individual or two come and tell their story, kind of like we had at that NHII meeting. No, it was at the June 5th, the EL initiative, the Marco(?) thing, because I think that is very - that really leaves the mark on people. Although it is anecdotal, sometimes it is a very important story to tell.
And the other thing is I would like to see - even though, I donµt know if you guys would agree with this - but instead of having like a consumer panel, you know, one panel in the morning, a purchasing panel later and a consumer panel, I would like to see them be mixed up, where you donµt have just one group, so that they all kind of listen to you. Sometimes, you know, one group comes in, then they leave, because they have to get going. So I would just mix them up, you know. Maybe youµd have - you know - one group, the Leap Frog, CMS ambulatory peer group. You have GE. You have AARP and you have an individual consumer who talks during one panel. I think that would be very interesting and something that we havenµt done in the past, but I think that - you know, if you guys donµt think thatµs too wacky, that is what I would recommend.
DR. LUMPKIN: The other bias that I would put on that discussion would be to say letµs try to get from the total level of healthcare down to a procedure specific, disease specific, specialty specific, some one of those definitions, narrower piece of healthcare, so that we can be more specific in the discussion itself around what the pieces are, that if we are trying to access how adequately personal-health decision making is supported by the information system that informs the system, then we have to get pretty specific, and it has to be information that correlatable, so that I can see the cardiologist coming with employers, with AARPs speaking about cath-lab(?) decisions.
DR. LUMPKIN: Well, but that is a whole different issue, which is what are the units of measurement? Do you measure at the individual care-giver level? Do you do it at the group-practice level? Do you do it at the facility level? Do you do it at the plan level?
MR. HUNGATE: All of the above.
DR. EDINGER: Maybe we should figure out what the focus of each hearing is, because we seem to be having a very - if we are going to ask them to come in, we should probably have an idea of what we wanted to talk about, because, otherwise, it is going to be an open-ended discussion. (Laughter).
DR. LUMPKIN: I think we need to sort of focus in on - because that is one question, and I think if we are going to do that, that ought to be one hearing, and then cut it a different way and look at whether we are going to focus in on the issue of satisfaction and satisfaction surveys. Are there problems? You know, and that may be where you go into the - you know, one of the diabetes-advocacy groups and the asthma-advocacy groups, which would have important stories about people who have received multiple surveys.
MR. ORTIZ: I agree with John. I think that those are all important areas, but they call for separate hearings, because it is too hard to mix them up.
DR. EDINGER: Yes, and also when the consumer - the consumer end, if you are asking people what do you think they need, I think you would find it difficult to find consumer-level people who know what kind of data elements they need to measure their own health. I think that is going - unless you are getting to the sort of techie consumers. Youµre probably not going to get - the average consumer is going to know are any of these five-data standard elements that - probably not be able to tell you that.
I guess also when you were talking about the consumers, do you want to get - I shouldnµt say more militant, but more vocal types like the - some of the groups that represent - like the Gray Panthers who represent the elderly group may not be as articulate, but they have very definite viewpoints on what they need, as opposed to some of the more general groups.
SPEAKER: Are they still around?
DR. EDINGER: Yes, theyµre still around.
Could always invite Sidney Wolf. Iµm sure he will have things to say.
MS. JANES: I guess part of this - you know, I am always going to show my discomfort with this. I guess Iµm just too much of a statistician, but I think we have to lead with a clear perception of what we want from these. I mean, do we want - you know, where are we going with this? Are we going toward - you know - this sort of consistent view of - you know, the final line of all our reports is going to be some estimate of - you know, if you assume that these are the goals, whether it is the goals for overall quality measurement or for a better understanding of satisfaction, then this is the status of our current data. You know, these are the things that are missing, et cetera, and I am assuming that we are probably always going to come down to some - that is always going to be the sort of underlying theme to much of what we do.
Well, then, if you start thinking about a consumer panel, what do we want to get from them that we can then fit into that final report?
As you said, they are not going to speak in terms of data systems. What you will get from them is a sense of what their concerns are, and then you can sort of feed that into other overarching sort of national initiatives and put them together, but I donµt - you know - I donµt -
DR. EDINGER: Well, I think you can ask them, in terms of what, as a patient, would you want to know when you go into a doctorµs office?
MS. JANES: Yes.
DR. EDINGER: You donµt have to know the data elements, but would they want to know how - you know, how many other people have had the procedure and how well the outcomes were? Would they be more concerned about how clean the office was, you know, and they give out lollipops? I mean, then you can get to issues of that sort, which is somewhat related to the satisfaction-type surveys.
DR. LUMPKIN: But, you know, again, I think that - so if you know that, what do you do with it?
DR. EDINGER: Right.
DR. LUMPKIN: There is a difference between doing that and looking at bringing in consumers and talking about the survey process, and if our only finding is that itµs broken and how itµs broken and recommend that this be an area of focus for the federal government as well as the organizations outside the federal government that are developing these surveys, that they ought to work in some sort of consistent fashion so that the questions are all asked the same way, so that there can be a consolidated survey, well, we could probably make that assumption right now sitting at this table, but how do you validate that? You validate that by doing the hearings, and, there, so much of the hearings that were done, conducted for the privacy rules. Youµre not going to get hard numbers, and youµre not going to get hard data, but what we are recommending, which is a logical conclusion from that, would be a letter to the Secretary recommending that the department, through ARC, could take the lead in developing some consolidated approach to the patientµs satisfaction survey.
MR. HUNGATE: I have to confess some reluctance to sign on to that.
Recent health-affairs articles say people are basing their judgments of where to go on prior satisfaction surveys, which says that satisfaction surveys are not serving a good consumer purpose, and so I donµt feel very strongly disposed toward making the survey process better if the surveyµs results arenµt yielding what we need.
DR. EDINGER: Well, maybe itµs two parts. One is the consistency and the other is the missing data elements in the surveys that would satisfy your needs to provide better information to the consumer.
MR. HUNGATE: But, you see, I think that the missing data element is the patient doesnµt go to a hospital for the whole hospital set of services. They go to have a baby or to have a knee surgery or they go for very specific things. Surveys donµt tend to address those things, because they cannot.
DR. LUMPKIN: But, again, the way people make those kind of decisions are probably less than letµs - looking up a survey and see how well people liked the hospital. It is more important to them how their neighbor liked it or their friend or whatever, but if we want to improve the experience of their neighbor and their friend, how does the institution know how they are performing? And the only way to do that is some sort of survey. So it feeds into the quality-improvement process on the intangible sides - Iµll call them the sheets-and-eats part of the - you know, and the experience part of -
MR. HUNGATE: But itµs such a small piece of the total system. You know, it is important, but it is not where the real meat is my serious discomfort.
SPEAKER: Bob, are you -
MR. HUNGATE: And the focus on -
MS. HOLMES: Where do you think the real meat is?
SPEAKER: Yes.
MR. HUNGATE: Valid expectations for the specific procedure. In the case of a hospital, specific disease management in confronting disease. What are the specific things that relate to me as the patient that will result in my better result at the conclusion of it? What is the information system that supports that, that enables tailoring to my specific condition as a subset of a population?
DR. LUMPKIN: But given that, and within the context of the work that is being done by the Standards and Security Committee on putting together the pieces that are required for the infrastructure, the electronic health record, which is where that data is going to come from -
MR. HUNGATE: That is where it is going to come from.
DR. LUMPKIN: - the Institute of Medicine framework that is being done that is now being vetted by HL-7 -
MR. HUNGATE: Yes, I read that.
DR. LUMPKIN: - how can we contribute to that process as a workgroup?
MR. HUNGATE: Yes.
DR. LUMPKIN: - and so while that may be the meat, and that is already being done, then the question is where do we add in?
MR. HUNGATE: Yes.
DR. LUMPKIN: So it may be that the meat is already there, but, you know, somebody needs to pay attention to the garnish. Maybe weµre going to do some garnish work.
MR. ORTIZ: Excuse me. This is Eduardo again.
When someone asked Bob where do you think the need is, I just thought, you know, well, should that be part of the hearing. I mean, instead of us trying to decide where the need is, should we be bringing people in to help tell us what the needs are? Because what we think are the needs may not necessarily be the correct needs.
MR. HUNGATE: Meat is the word, but need and meet may be close in this.
MR. ORTIZ: Okay. Whereµs the meat?
MR. HUNGATE: Right. (Laughter).
Gail, you look puzzled.
MS. JANES: (Laughter). I guess, again - and I know I have certain sort of boundaries within which I am going to feel more comfortable, and I guess part of what I am a little - if I understand you correctly, what I am a little uncomfortable with is, I think, given - as John was saying, given just the nature of our work-group smallness, et cetera, I think I am always going to be the most comfortable working off of bodies of evidence, discussions that have already reached a certain level of maturity out in that sort of outside world of thereµs a lot of people working on the issue of quality, obviously. It is a huge issue that has been around for a long time, and so I guess what I would most like to do is to try, as a committee, to identify things which - issues which seem to fall within our bailiwick, which seem to have reached a level of maturity such that there seems to be a general sense that this is valid, this is appropriate, this is ready for prime time, and then, again, sort of go in and talk about the data issues that spin off of that.
When I - and I may just completely misunderstand you. When I hear you talking about some of these issues, about the information that a consumer needs in order to improve the likelihood of a positive outcome, which is, I think, what I am hearing you saying, to me it strikes me as such a broad issue, certainly not an unimportant one, but an extraordinarily broad one.
You know, all the issues come to mind of, you know, what information should you - from a scientific point of view, what information would you expect someone to know in order to improve the likelihood of a positive outcome - like a diabetic. You would want them to know their own blood-glucose levels. You would want them to know certain issues of that, these other issues of what actually motivates people in terms of their choice of a care giver, which you could sort of put under that, and, of course, thereµs huge groups of people who are working on that issue, and the fact that, you know, we throw all this performance data at the public, at consumers, and, in fact, very little of it seems to move them or change their behavior. In fact, what they seem to do is turn to - you know - a family member or a neighbor. So, you know, are we talking about that issue?
Like I said, I guess I would be a little more comfortable if I could put my hands around sort of a smaller issue and point at that.
MR. HUNGATE: The issue that I am trying to focus on is that all this information which is given ostensibly to consumers is not valuable and that the task is is to find out something that is valuable.
MS. JANES: Valuable in what sense? To what end?
SPEAKER: And to whom?
MR. HUNGATE: To the end of informed consent, informed decision.
The Pennsylvania Cost Containment Data release didnµt necessarily inform an individual of where, really, they should go for their cath-lab work, their cardiac surgery. You know, it didnµt really help the decision that it was ostensibly to help, and that is the problem that I am trying to address, that I think is an HHS data-and-information challenge to say how do we get the right information?
MS. JANES: Well, again, I guess the only -
MR. HUNGATE: So that the information is as trusted as the friend.
MS. JANES: Surely.
Again, I mean, this is not my field. Itµs - I mean, primarily falls in the bailiwick of behavioral scientist, but, you know, I think a lot of behavioral scientists would tell you that there is a huge issue around what motivates people, particularly when you are talking about their healthcare, and that perhaps the field has made the mistake of assuming that it was objective facts which motivated people, and that does not appear to be true. It may be true for you or for me, but for the broad variety of consumers, it does not appear to be true, and I guess Iµm leery of getting caught up in that - which has been a discussion that has been going on for a long time.
MR. ORTIZ: This is Eduardo.
And I have to agree with Bob in terms of there is very widespread data everywhere that the measures that are produced to measure quality that are out there, even for things like the federal employees, that, over and over again, that information just ends up not being useful or useable to consumers, and it is not necessarily just that they may not want objective facts, it is what facts are collected, how they are presented, lots of other things.
So that is an important thing, because we are supposedly doing all this measuring and supposed to be helping patients, consumers, whatever, make better decisions in terms of choosing a health plan, choosing a provider, making medical decisions, and it is not achieving that because it is not - it is either not the information they want, it is information they want, but itµs not presented in an appropriate manner, it doesnµt have other things involved that they need.
So I donµt know - I mean, Iµm not saying that we should focus all our efforts on that, but I think that is a very important issue that does need to be addressed. Now, whether that is addressed as a separate set of panel hearings, like a whole day of hearings, or whether that is just - we just need to make sure that that is included in what we do, so we donµt ignore that piece, because it is also important to make sure that we are doing things - you know - getting the right stuff for provider organizations, for purchasers. I think all of those are important, and, to me, the question is do we do a kind of a thing where we make sure we cover these different stakeholders or is this important enough to have a separate set of hearings just to cover that area?
But I do have to say that, that that is a very important issue that I think - there is a very strong role for us to play there, and it isnµt being addressed very well.
DR. EDINGER: Maybe the first thing we should do is identify what it is patients or consumers think are of value in general terms.
Like me, if I went to buy a car, the first thing I would do is go to ·Consumer Reports.º It gives me information about the carµs performance, its past history. What would I, as a patient, want from somebody?
MS. JANES: And I guess, you know, we may - ending up just having agreed to disagree, but, I mean, that is exactly the pit Iµm afraid we are going to fall into is pretending that we can answer that question, and I donµt think we can. I mean, we are talking about 15 Ph.D. theses rolled into a long - I mean, this is a huge issue, and I guess -
MR. HUNGATE: Iµm not disagreeing.
MS. JANES: Iµm not disagreeing that it is important.
MR. HUNGATE: I donµt disagree with that being a -
MS. JANES: I think it is extraordinarily important, but I think it is a huge issue with lots of people out there thinking about it, and I guess what I am concerned abut is that weµll roll out four panels, you know, one will be consumers who - na, na, na, na, and then weµll come forward with a report and say, okay, this is what we think consumers need to know, and end up looking very disingenuous, you know.
MR. HUNGATE: I hear you.
MS. JANES: Yes.
MR. HUNGATE: Now, the void that I think exists is the realization of the underlying major significance of the health-system change that has to occur, which is partly a professional - it is an information-system change, which I believe fundamentally depends on NHII, but I think it depends on building a new physician-patient relationship. I think fact is at the center of that, but there is a government HHS role in helping the information architecture evolve around the right commitments for people, you know, expectations, what information, fees, which ways, what is the information architecture to support quality?
DR. LUMPKIN: Let me perhaps ask this question: What would you see as the - we do this hearing, what would you see as being the recommendations that would come out?
MR. HUNGATE: If I focused in cardiography, as an area that I know much more about from my own professional experience than others, then I would expect that we would be able to articulate what should happen in the personal dimension to enable patient information around functional status to evolve to mesh against the clinical information system which supports the measurement of the outcomes of coronary-artery-bypass graft, angiography, PTCA, in terms of the establishment of valid expectations, so that the probability of malpractice problems post-operatively diminishes.
In other words, weµve got a tension, a malpractice tension, a tendency in organizations to keep their data quiet to some cases, not say anything about some data, so that we have a contentious malpractice environment, which discourages the kind of quality-improvement model that I think needs to happen.
DR. LUMPKIN: Right, but thatµs stating a position. What would you see as a recommendation from the committee to the department as an end result of addressing this issue? That the NCVHS recommends that the Department of Health and Human Services does what?
MR. HUNGATE: Reinforce the public accountability of risk-adjusted outcome measures for procedures.
DR. LUMPKIN: Iµm not sure the Secretary would understand what that was.
MR. HUNGATE: There was an initial data release around mortality, which was not adequate as the measurement of those, was not judged to be correct, but it has disappeared. There is no public accountability for outcome measures, which then forces the internal system comparison that enables improvement.
DR. LUMPKIN: So the recommendation - if I can perhaps rephrase that - the recommendation would be that the Department of Health and Human Services would continue to encourage the availability of public information on quality and would play a lead role by releasing quality information that is important to consumers in making healthcare decisions.
MR. ORTIZ: And I would also add, and we also should take a lead role or should encourage the support of the development of tools as well, not just the information, but the tools to be able to provide consumers with useful information that they can use to make day-to-day decisions about healthcare.
MR. HUNGATE: Well, and to validly set expectations for results, based on their individual characteristics is the part that I am driving at.
DR. LUMPKIN: So if that is the rough framework of a recommendation, then - and I think that that will be controversial. We will have the various provider organizations who will be very strongly opposed to that, because they are the same ones who tried to kill - you know - when they were reporting on mortality by HCFA before it was CMS, and I am not opposed to fighting those battles, but I think if we say this is where we want to go, then we need to craft the hearings that allows all parties to have their input -
MR. HUNGATE: I agree with that.
DR. LUMPKIN: - into that, for which we can then look at the positions taken by all parties and say, based upon that, we recommend that the department do the following things, and I think that that is -
MR. HUNGATE: It is my belief that that is the void, that the providers have controlled that information agenda, and it has not served patients well.
MR. ORTIZ: Eduardo again. I donµt know if Iµm the only one on the phone, so maybe I shouldnµt be saying that.
I think that would be an excellent thing that we could do. I mean, it is a little different than what I started off with with my recommendation, but I see that that would be something that would really create a unique role for NCVHS that nobody really has been playing in terms of developing quality measures and tools that patients can use in making practical decisions on their healthcare.
And Iµll give you an example, something that actually is going to be done with the Bridges program. I was talking to some of my CMS colleagues, and I know this would be very controversial, but I was going to buy a new TV. Iµve had the same TV for 14 years, and I needed to buy a TV. So what did I do? I started searching, because I wanted information on TVs.
Well, the most useful thing I could find was when I got on Circuit Video and I got the site that had basically evaluations from like - I donµt know how many - 68 or 80 purchasers who had bought the same TV I was looking for, and it had like five simple questions that they asked and then you could put in comments, and, my gosh, that was so helpful to me. It was more helpful than all this other information that is provided by the manufacturer and the provider and this and that, because it really let me see do I want to buy this TV set, because they really told me the down and dirty, whether they liked it, what was the picture like, how hard was it to set up, this and that and the other thing.
So I was talking to my CMS folks and said, yes, wouldnµt it be cool - I know the doctors would hate it - if patients had the same ability, that when they saw doctors they could rate their doctor like on an individual basis. You know, you could have five questions. You could have 10. You could have a comment field, and, you know, what if you rolled this out kind of in a healthcare plan? What if you rolled it out in a regional plan?
Well, I talked to the Bridges of Excellence people, and now they are going to be doing that. Unfortunately, they have kind of gotten a little out of control. We started off with 12 questions, and, now, theyµve got 50 questions - (laughter) - and, you know, you canµt have 50 questions. I said, you gotta have - you know, maybe you can have a core set of questions, of five questions or 10 questions, simple questions, allow for some comments, and then, if they want to go on, give them the option of going on and doing more, but they are going to try it.
Now, you know, the providers arenµt going to like it, but you know what? It will be tremendously powerful in terms of giving patients the information - not only information they need - and some of it may be subjective, but that is okay. Maybe they need that information, but you are just letting people go out there, rate their experience, and that will change provider behavior, I think, if they know that they are being rated by these patients.
And imagine if this eventually rolled out of the CMF thing on a national level where people - you know, I have had some recent experiences with my family members where they got really terrible healthcare, where two of them almost died, and if I hadnµt intervened, they would have died. I would love to be able to put some comments about my experience on that thing to warn other people about these lousy doctors.
You know, is that controversial? Yes. Will providers fight it? Yes. But you know what? Is it useful information? Oh, my God, itµs very useful to patients to know the good things about the doctors and the bad things about the doctors.
So I think things like that are things that - I mean, that may not be what we end up supporting, and Iµm not saying we have to do that, but the point is that that would be a very patient-friendly tool, but it is not provider-centric. It is patient-centered, and it will be controversial, and I agree that we have to get all the different perspectives. We gotta get the providers in there, the patients in there, the purchasers, but if we tackle that issue and came up with some recommendations on developing quality measures - and not just the measures, but the tools in order to be able to provide consumers with good, useful, practical, quality information, I think we would have left our mark and done a great service.
DR. EDINGER: I think also the people who service my complaint, because they are not used to comment fields. Although, I agree with Eduardo. Iµve used the same thing and it is much more helpful than three stars, five stars and -
DR. LUMPKIN: Unless they do it the way the military does promotions and evaluations or the used-car dealers or car dealers do for their evaluations, which is as you are leaving, they say, by the way, you know, if you mark anything but excellent, my boss will yell at me. (Laughter).
MR. ORTIZ: And the stuff they are going to do at Bridges for now - they are not going to use it for payment differential. They are not going to use it for any - they are just putting it out there as an information source. I mean, later on, people could think about is that something they should do, and we said, no, donµt do that. All you are trying to do at this point is provide useful information to people who want to provide it and for the other potential patients, consumers can take a look and see, you know, do I want to sign on with this doctor?
I mean, it could be very powerful, because they could say, you know, this doctor is wonderful. This doctor does this and this and this.
We also are setting up a system where they canµt game it. You can only do it once, because - so that, you know, somebody doesnµt try and just put in a bunch of positive comments over and over, but itµs an experiment, but I think itµs going to be interesting, but thatµs another important point. We are not using it to ding them(?) in terms of payment or anything like that. Weµre just using it for informational sources, as an informational source.
MR. HUNGATE: We are going to need to take a few minute break here. Let me try something and then weµll go from there.
I think that I have exposed my biases pretty strongly.
My sense is that a hearing might address the issue of what is the time frame, what is the likely evolution of the personal-health dimension in the NHII, moving forward, and how it would support the evolution of this kind of agenda that we are talking about, because I think, over time, this will become less controversial.
I think to try to talk about what are the conditions wherein we can make this conversion to provider accountability around the results we are talking about - whether they be just mortality or mortality and more - to try to focus on how the personal-health dimension and data collection by individuals gets fed back to other individuals and fed back into the provider system to make quality improvement work.
DR. LUMPKIN: Well, see, I would argue it differently, because if you do Venn diagrams, it is not that this is dependent upon NHII, but, in fact, a description of the personal-health dimension will include within it a context of this piece, and so until this piece gets refined by us or recommendations are made, it wonµt get developed in the personal-health dimension. So I wouldnµt ask that question, because no one will be able to answer it.
I think would rather be what is it that we want to see happen, and then use that to feed into the development of the personal-health dimension.
MS. JANES: I know that everybody wants to break, but just out of curiosity, I donµt see an obvious place in the personal-health dimension for risk-adjusted, ultimate-outcome data. How do you see them fitting - I donµt see a Venn diagram that brings these two together at all.
Unless you take mortality data from - or, like I said, you know, whether you are talking about the reappearance of a tumor or - unless Iµm completely understanding what your meaning by outcome - risk-adjusted outcome data.
DR. LUMPKIN: Well, the risk-adjusted outcome data comes from the healthcare-provider dimension.
MS. JANES: Yes.
DR. LUMPKIN: It is generated there, and then there is that overlap in the Venn diagram between that and the personal-health dimension, because, really, this is - the personal-health dimension includes the personal-health record, which, by and large, is going to be populated from information that is put in - data that is put in by the individual and information that is gleaned from the electronic health record, but that is only a piece of the personal health dimension.
Then there are things that are important to me. Some of that may be a better tool for skimming the internet for health information. Another one would be a better tool for me understanding the quality measures that are out there for my healthcare provider. So it is really very consistent with the concept.
We have been trying - in our discussions, an issue came up frequently is that we donµt want to equate the personal-health dimension with the personal-health record.
MS. JANES: Am I correct when - I mean, when you first described this issue of risk-adjusted outcomes, that, for me, was my oh-ho-ho moment, because it is consistent with what you have been talking about all along, at least what I have heard you talking about all along, and that is - you know - just charge the - you know - the providers, whether it is institutional or individual, with ultimate outcome data and let them figure out how they are going to get there, and then evaluate based on that, and then the addition, obviously, of these issues of risk adjustment, so that at least in theory one can make a fair and equitable comparison, and so - I mean, whether it is mortality data, if you are talking about a hospital or a surgeon or - you know - some other sort of like data, you know, that is what I hear you saying is letµs make this available. Letµs see what it would take to make this available.
I guess that would be my next question is where in there would we focus? Would we focus on looking at the data elements? You know, what has been said about risk-adjusted outcome data? For what outcomes? What is the state of the art? Are those data available? Where would you make them available? Sort of those sorts of things.
Am I sort of moving - is that more or less -
MR. HUNGATE: You are accurately stating what I have said. I donµt think I have full conviction on everyone elseµs part that that is an appropriate task for this group.
MS. JANES: I guess the only thing I would say, once again, is that - well, two things, as I said. One is is that I think - if that is the direction in which we are going to go, then I think it is important next to define it in fairly explicit terms, and also to realize that, obviously, this issue of risk-adjusted outcome data has been around for at least 20 years and people have been - I mean, I first worked on this in the VA with mortality data in hospitals almost 20 years ago. So, I mean, it is a big issue that has been around for a long time, and there is lots of work out there, and so then I think it would be our task to sort of look at what is there and carve off our piece. You know, we donµt need to define the problem as though itµs a new one.
MR. HUNGATE: Well, see, I want to define our piece as the translation of the overall to the individual, using the risk adjustment to provide the risk assessment, in the terms that you used.
MS. JANES: You mean the risk assessment at the individual level.
MR. HUNGATE: Right.
MS. JANES: Oh.
MR. HUNGATE: See, I think that is what the information system should support. That is where we should be going.
DR. LUMPKIN: Well, Iµm not sure about the statistics of that in that the - and I am going to give an analogy, because I just have a concern in not knowing the numbers, but, in Illinois, we provide - we used to provide or they now provide a system called the I Plan, Illinois Project for Local Assessment - which provides data at the local level, at the county level, for various communities, and the problem is is that in between the censul(?) years, the enumerators start going away, because you just canµt actively predict the population. Now, you can roughly predict it for the county, but when you start getting into sex or age stratification, you end up with a report that is all asterisks, because the ability to actually calculate rates disappears.
So taking it from the general into the individual has certain risks and the power of the statistical analysis that you are doing could actually predict that risk.
MR. HUNGATE: That is where the NHII comes in, being able to move to virtual registries that enable you to change the base and change your statistical predictability.
MS. HOLMES: I donµt follow that, Bob. Could you give an example?
MR. HUNGATE: The risk of death from coronary-artery-bypass graft is conditioned by many patient variables, some institutional process-control variables. Some of those patient variables will, for an institution, be too infrequent to be good predictors for that individual institution for the assessing of individual patient risk, so that you need a much broader database in order to give an individual assessment, and that should be a power that comes out of the NHII is the ability to do that broader statistical base and hence provide a valid individual assessment.
DR. LUMPKIN: But to the extent that those - that risk is determined based upon - you know, itµs like Heisenbergµs(?) uncertainty principle. You know, you canµt - in high-level physics, I think you canµt measure the length and the position of an object. Thereµs these -
MS. JANES: Velocity.
DR. LUMPKIN: Velocity in length.
Anyway, the measure for risk incorporates a measure of quality. So if I look at everybody who is having cardiac surgery, it tells me that when you take the broad spectrum of people who are doing surgery, from really bad surgeons who have no business doing this to really good surgeons, now, you roll in my particular risk factors that, you know, Iµve got an unstable diabetes, Iµve got high-blood pressure that is kind of episodic, because maybe Iµve got adrenal disease, all of a sudden, the end starts getting smaller and smaller.
MR. HUNGATE: Yes, it does.
DR. LUMPKIN: Even if you use a large population, in which case the variability, due to the quality of the surgeon, starts becoming to be a factor, so the range of that risk gets much broader.
MR. HUNGATE: Yes, it does.
DR. LUMPKIN: And Iµm only describing it. Iµm not saying that it is necessarily a problem, but it certainly - if you are going to move into doing that, you need to understand - and, I mean, not you, but we need to understand whether or not the statistical science will support the ability to give the kind of information that we want to give.
MS. JANES: Well, it may be that what you might want to do is if you - if everyone accepts the premise that thatµs the direction which this group wants to go with their next item, then you say, among other things, that might help us get around some of the political issues and say if one wished to go in the direction of risk-adjusted outcome data for consumer use - whether the consumer is a purchaser or an individual, then this is the state of the art, these are the issues, like statistical variability, lack of power, poor denominator data, et cetera, et cetera, et cetera, and these are the ongoing or expected - these are the things that might address these or -
DR. LUMPKIN: And it very well could be that our recommendations not be that the system be set up, but that there is a research agenda that needs to be focused in on.
MS. JANES: Exactly. That you speak to the research agenda, and, again, this would get us out of the box, and I sort of agree with John is that I would be very cautious before I went out and said we support the idea of use of risk-adjusted outcome data, because, obviously, there is - I mean, this is - as you said, everybody, I think, knows - a hotly-contested issue.
Then, we could simply say, we are one to choose to go in this direction. This is - you know, we are going to look at the statistical issues, not take a stand on the underlying premise.
MR. HUNGATE: I hear you, but let me make another observation, that laparoscopic cholecystectomy evolved with very little literature support very quickly. Incentives make a difference.
The medical profession, for good and valid reasons, has had a print-based methodology of dissemination, which means that the adoption cycle for many things is very long and very slow, so people are frustrated by the result, and I donµt think we change that until we change the driving system that lets the poor surgeon see their own risk-adjusted comparison to others and decide whether to continue in that part or to move to another part of the system. Unless that tension exists, we donµt make the change.
So I am willing to accept it. It may just be a research agenda, but I have to confess that I feel like assigning things to a research agenda is consigning them to the never-never land, because thatµs - Iµm coming from a different world.
DR. LUMPKIN: But you are talking about two different issues.
MR. HUNGATE: Yes.
DR. LUMPKIN: One issue is assessing the -
MR. HUNGATE: Yes.
DR. LUMPKIN: - the quality of a surgeon, institution, whatever -
MR. HUNGATE: Yes.
DR. LUMPKIN: - based upon risk adjustment, and I think that there is a science base for doing that.
MR. HUNGATE: There is.
DR. LUMPKIN: Allowing patients to make a decision based upon their own personal risk is a totally different matter.
MR. HUNGATE: But I think it is the underlying flaw in our malpractice system. I think the absence of that piece -
DR. LUMPKIN: Discussion about malpractice is a whole totally different issue, but the point I am trying to make is that there is no scientific basis to move from risk adjustment, adjusted assessment of an individual provider to giving a patient ability to assess their risk in any procedure for a given provider, that there are too many steps that have not been investigated to show that there is a valid assumption, that you can move from - you know, itµs that whole logic thing, because A implies B, B implies C.
MR. HUNGATE: Right.
DR. LUMPKIN: That doesnµt mean that C implies A.
MR. HUNGATE: That is the hearing agenda or the research agenda that I would say is appropriate to that issue of whether that is an appropriate issue, and what the conclusion is from that depends on what you hear.
MS. JANES: If you wish to go in that direction, this is what you would have to do.
Now, I agree with John. I think almost undoubtedly a part of what that report would do was it would end up laying in a lot of very significant challenges to moving in that direction, mostly sort of data-density issues, but it certainly would be fair to lay those issue out.
Again, the only thing that I would be uncomfortable with - and that - as we all said, that would speak clearly to the research agenda.
I think to then take that and push it too far in the direction - I guess I am loathe to push it too far in the direction of looking like we are playing an advocacy role rather than a more dispassionate reporting role. I donµt really think that is our task is to function as an advocate, and I think when we lap over that line, that is when we sometimes get our fingers smacked, and not necessarily inappropriately so. So I guess that would be the only caveat I would throw out there.
As I said, I think as long as we said - as I said - sort of lay it out as were you to wish to go in this direction, and these are the pros and these are the cons, and, yes, this is an ongoing discussion and everybody da, da, da, da, da, da.
In other words, we are not making any statement about the pros and cons. We are simply stepping into the middle of an ongoing discussion, and we are going to follow some of the statistical issues through and determine what the state of the art is now, what it would take to get to this ultimate point and make final recommendation to the research agenda were one to make the decision that you wish to go in that direction.
But that - of course, then that would move the panels that you took in a very different direction, too.
MR. HUNGATE: Very interesting point that makes sense.
MS. JANES: Iµm certainly at least more comfortable that I sort of know what we are all talking about.
MR. HUNGATE: All right. Break time. Iµm not going to try to restate. (Laughter).
(Brief recess.)
(10:40 a.m.)
MR. HUNGATE: What I have asked everybody to pull up is their draft NCVHS Quality Workgroup Recommendations. Now, you probably donµt have that in front of you, since it was the packet that came here.
DR. LUMPKIN: It was emailed.
MR. HUNGATE: It was emailed. Okay. So you got it in email.
MR. ORTIZ: Lo and behold, it is sitting right in front of me.
MR. HUNGATE: And we are looking at page 4, under Recommendation No. 12.
DR. LUMPKIN: Can I just make a comment on page 1, Recommendation 1 and 2?
MR. HUNGATE: Sure.
DR. LUMPKIN: We may want to harmonize these with the Population Subcommittee, because I know they are moving forward some recommendations on race and ethnicity data collection.
MR. HUNGATE: Yes, the way I was going to proceed here is to deal with the patient identifier first.
DR. LUMPKIN: Okay.
MR. HUNGATE: Since that is where we had it on the agenda, and then come back and go through, and I had anticipated that BRACA(?) ethnicity would mesh with the Population Subcommittee.
Okay. That recommendation states develop a standardized patient identifier or patient-identifier logic that can be used to link healthcare records for the same patient across payers, providers and care centers.
I have been advised by more knowledgeable people that this is an extremely sensitive subject, and that we should address it carefully and make a recommendation which is sensible that will deal with the concerns for privacy that are valid and appropriate yet provide the ability to improve quality that we think is possible by the presence of that identifier.
I donµt have a lot of this history. Whether that is good or bad, I am uncertain. So I am now all ears.
DR. LUMPKIN: Actually, I do. I have the scars to show for it.
MR. HUNGATE: I rather thought you might.
DR. LUMPKIN: But I think this is a fine recommendation with the inclusion of one word, and that is develop a voluntary standardized patient identifier.
As I look back upon the fiasco of 1997 or ?98, whenever it was that we held the Standards and Security Committee when I was chairing - so it must have been ?97 - on the unique identifier, held in Chicago, State of Illinois Center, one fateful day I think in August - (laughter) - part of the problem is that - and I am not saying this is going to eliminate the difficulties, but if we had a standard identifier that people like me would want to - who want to have it can get it and use it, I think that is different than saying that we have a mandatory one, which is what HIPAA really says.
There are alternative systems or identifier logics that would allow people who want to have their entire medical experience be anonymous. In other words, it wouldnµt be anonymous, but it would be not linkable. For example, you could use your providerµs ID, the Julian date and then a sequence number. So that would uniquely describe - in your providerµs information system, they could link that number with your name, but another provider would not be able to link into that, nor would somebody hacking into the system link that with your name, and so if I go to see my urologist for my venereal disease, then I could go in and say, you know, I donµt want to use my regular provider - you know - unique number. I am going to use this anonymous number for this particular visit or this non-linkable number.
So if we would think about some system of uniquely-identifying people for whatever part of the healthcare encounter that they choose to have linked to their personal record, and we create the infrastructure for that, I think that will go a long way, and may sidestep at least a large portion of those people who choose to go through their healthcare experience without others being able to detect that.
MR. HUNGATE: Okay. That seems very sensible.
MR. ORTIZ: This is Eduardo, too, and knowing that John has a lot of experience with this, I agree. I think that this is an important recommendation, and although it was controversial and still is controversial, though less controversial than it has in the past, you know, itµs one of these things that people have - you know, I guess once you have kind of exposed people to it and the initial shock is over, they get a little bit more used to it and so there is less resistance now.
It has pretty much been agreed upon nationally that you just canµt do the things that we want to do unless you have a national identifier. So even though it still may bother some people and it still is controversial, I think it is important that we put it in because it is necessary, and I think if we put it out there and keep pushing and pushing and pushing eventually it will occur.
I agree with the voluntary thing. I think that makes it a lot more palatable. I donµt know if you want to put in wording somehow in there just to kind of make sure that they realize logic that can be used somehow stipulating by, you know, healthcare providers that have been - you know, that are allowed to use it or that are appropriate to use it or that the patients have chosen to use it, whatever the terminology is, just so that might also soften the resistence in terms of letting them know that, hey, this isnµt something that just anybody can get to, but people that you have identified or that have been identified as appropriate providers, whether or not we want to put that in or not. It might help lessen a little of the resistance.
And then the only other thing was just depending on who our audience is, I know what you mean by patient-identifier logic, but I donµt know if whoever is reading this - I mean, Iµm sure the whole - panel knows what that means, but as it goes on by other people whether or not we just need to make it a little bit more easy to understand whether itµs somehow, you know, a mechanism for identifying patients that can or something like that. I just donµt know if everybody will know what it means by patient-identifier logic.
MR. HUNGATE: Well, Iµm not sure I understand, and let me start from that premise and take the position of someone who is incredibly concerned about having my identity compromised by this system that you folks are establishing.
What safeguards do I have if I wish to maintain anonymity and use some untraceable number for this episode? How does that protect me for those things that I have deemed as important to my privacy? Itµs a general question.
Seems to me that we almost have to articulate the other side of it, because I hear great pride on a lot of peopleµs part about how they can go in and look at all these things and end up linking records that the patient might not wish to have linked.
DR. LUMPKIN: Well, first of all, any record that has your name on it can be linked using a probabilistic matching algorithm.
For example, when I was in Illinois, we hired an expert, because we were involved in litigation, which is actually ongoing. We gave this expert the type of cancer, date of onset and zip code on 50 patients and she was able to identify half of them using publicly-available databases. So linking - you know, making those kind of connections is possible in the current environment.
So the question is is to what extent do you increase your risk? And you increase your risk by giving somebody a number that then can be searchable, because there arenµt a whole lot of John Lumpkins in the country, but there are more than one, and that record may or may not be my record.
MR. ORTIZ: And another flip point of that is not just how much do you increase your risk, but also how much do you decrease your risk because of decreasing the probability of picking up the wrong patient and doing something inappropriate to them because you have actually linked them to the wrong John Lumpkin. Will the patient identifier thatµs unique decrease that risk? Because thereµs two sides of the coin.
DR. LUMPKIN: Right. And thereµs a whole lot of - thereµs a lot of anecdotal stories on the other side in the patientµs safety literature about people with same names getting the wrong treatment and so forth.
If, in fact, you go to a visit with a clinician without that number, then they are going to have to - you know, it doesnµt reduce your risk, but it does prevent anyone who doesnµt have access to this probabilistic - I mean, this is not - you know - a kid sitting in their room being able to do this stuff. It is fairly sophisticated activities, but if you are not sophisticated, you can create a medical record.
So to the extent that you give someone access to your medical record, you are going to be at risk. If you donµt generate an electronic medical record - in other words, you have individual visits that are not accumulated someplace or not linkable or accumulateable, then, in fact, you are somewhat safe. It is like going to an HIV clinic and using an anonymous testing facility.
MR. HUNGATE: Is there someplace that these elements that you have just talked about are accumulated in a decision matrix or an individual to decide about whether they want to have the data fire(?) or not? In other words, is there a mechanic development?
DR. LUMPKIN: Is there or should there be? Yes, there should be.
MR. HUNGATE: I was obviously coming to that. Should we be the place to develop that or HHS be the place to develop that? Is this a recommendation that - and it feels to me like it is something that is much bigger than the specific report here. Itµs a broader - that it needs this discussion in a - of why voluntary and not - but maybe Iµm wrong.
DR. LUMPKIN: Yes, I think that that is somewhat down the road.
MR. HUNGATE: Okay.
DR. LUMPKIN: I think if our recommendation were to expand and say that develop a standard - a voluntary standardized patient identifier or identifier logic, which Iµm not sure what that means, but it kind of sings. You know, I always kind of like the logic. It can be used to link, when authorized - when authorized by the patient.
MS. KANAAN: When authorized by the patient, can be used -
DR. LUMPKIN: Yes, when authorized by the patient, can be used to link healthcare records for the same patient across payers, providers in care settings.
Such a system should include clear guidance to patients of risks and alternatives.
MR. HUNGATE: Risks, benefits and alternatives?
DR. LUMPKIN: Right.
MS. KANAAN: As well as benefits?
DR. LUMPKIN: Right.
MS. KANAAN: Potential benefits?
DR. LUMPKIN: And potential benefits of using a standardized patient identifier -
MR. HUNGATE: Of enabling longitudinal record management?
DR. LUMPKIN: No, just - its benefits of using such a standardized identifier. What I am trying to do is think of some way of saying that - you know - this is something that they could choose to use situationally. So maybe clear risk and benefits in each patient encounter.
MR. HUNGATE: In each patient encounter?
DR. LUMPKIN: And then the supporting text would describe how the system could be developed in such a way that, at each encounter, they can choose to either use the identifier or not, and thereµs risk and benefits to not using the identifier, which is that you canµt create this longitudinal record very easily or individually I have to create the index to it.
MR. HUNGATE: Okay. Well, I think process-wise in developing this recommendation, we probably need some draft words which we then vet across the Executive Subcommittee soon. Seems to me that -
MS. KANAAN: Executive Subcommittee?
MR. HUNGATE: Of the NCVHS.
MS. KANAAN: No -
MR. HUNGATE: No? You donµt think - Just here?
DR. LUMPKIN: Yes, I think - you know -
MS. KANAAN: As part of the entire -
DR. LUMPKIN: Itµs - yes, itµs coming up. It will be -
MR. HUNGATE: Okay.
DR. LUMPKIN: It will generate some discussion at the full committee, and that discussion is bubbling up, and Iµm not sure whether our recommendation will hit before a recommendation elsewhere.
MS. JANES: Oh, youµre saying that you sense in the ether that this issue is going to rise to the top independent of what this workgroup does.
DR. LUMPKIN: Maybe, but the time is right. Itµs time to come back to it, and, you know, we can just, in this administration, point out it was Al Gore who told us to stop.
SPEAKER: Thatµs true. (Laughter).
DR. EDINGER: Iµm curious. To acquire electronic records without patient identifiers - and the patient chooses not to have an identifier, but there is an electronic record, probably the information that is in that electronic record, even if itµs a different - John Doe and a different number, if I say Iµm such-and-such an age. I live in such-and-such a place in generating my medical history, you could probably figure out itµs me, regardless - if you it in electronic storage for me, you could probably still figure out itµs Stanley. If I tell you my age, where I live, my medical history background, you could probably trace it back to me. Thatµs probably going to be a problem if you go fully electronically that you could probably have enough data in there to link back to another patient who is also in the same system.
DR. LUMPKIN: Well, the difference between now and 1997 are the HIPAA privacy rules.
DR. EDINGER: Right. Thatµs the different environment. Well, first of all, you have to have access to the system, which means you need to break through the security. Second of all, you have to recognize that are significant penalties associated with -
DR. EDINGER: Doing that.
DR. LUMPKIN: - doing it. So there are criminal penalties and with both the privacy rules, and soon the standards, the security rules in place, I would argue that this environment now is safer than a paper environment.
MR. HUNGATE: I would, too.
DR. EDINGER: Paper was always very dangerous.
MR. HUNGATE: But that is not necessarily the publicµs perception.
DR. LUMPKIN: That is correct, and those who donµt agree with that have the option to opt out.
MR. HUNGATE: And that needs to be articulated in some way, I think, independent of our report, but maybe thatµs not right.
DR. LUMPKIN: Well, if we are going to raise it as a recommendation, then we probably need to say that in our report in the supporting discussion.
MR. HUNGATE: Okay.
DR. EDINGER: And maybe also you can include the HIPAA thing about the protections that are built in place that didnµt exist prior, and that changes the environment somewhat for doing this.
DR. LUMPKIN: Um-hum. Because there is also a congressional prohibition, in addition to Al Goreµs.
MR. HUNGATE: So our recommendation expands to include that action component as well.
DR. LUMPKIN: Right.
MS. KANAAN: Could I trouble you to repeat what you just said that we should include in the supporting language? Iµm sorry - Is it about the guidance or -
DR. LUMPKIN: No, itµs about the fact that an individual can choose -
MS. KANAAN: Yes.
DR. LUMPKIN: - not to participate in utilizing it either in their total healthcare experience or episode by episode.
MS. KANAAN: Okay.
MR. HUNGATE: A benefit of the HIPAA implementation is the protection for that patient who wishes not to participate.
MS. KANAAN: Not to, yes.
MR. HUNGATE: And I think we should say that, because it has generally been looked at the other way. So -
MS. KANAAN: Okay.
DR. EDINGER: You might want to put in the same thing about the protections on the HIPAA for the patient who doesnµt wish to participate that even though there is information entered that that information is protected by various criminal penalties.
MR. HUNGATE: Yes. Yes, I think that is important to reiterate.
Okay. Any further on that one or shall we go back to the top of the list?
Is Kathy on? Kathy Colton are you there? No.
SPEAKER: Was she going to dial in or were we going to dial -
MS. JACKSON: Yes, she is going to call in about 11:00-11:15 -
MR. HUNGATE: Okay. These workgroup recommendations are now in four groups - data content, data standardization, data linkage and functionality requirements for electronic health records.
MR. HUNGATE: Which is the result of our last meeting on this subject, and the first of those, under data content, is race, ethnicity data, and I know the Population Subcommittee is working on that description. What is their timing?
DR. LUMPKIN: There should be a - it wonµt come out in the report, but there should be a separate letter on race and ethnicity data for the September meeting, kind of the - the factors that are in play is that ARC is coming out with their disparities report probably during the first week of October. There has been some action behind the scenes to - it is not going to be a pretty report.
MS. JANES: In what sense?
DR. LUMPKIN: In the sense that there are significant disparities in the delivery of healthcare, in the quality of healthcare that is delivered. It is obviously not going to reflect well upon Managed Care. Managed Care pretty much knows that that is going to be there, and there are some efforts to develop a response. Part of that is increasing the commitment to collect racial and ethnic data as well as language data to better define those members in the Managed Care, so they can monitor within themselves and also assure quality is being achieved.
Managed Care would like to have a recommendation from some government agency which allows them to deal with the internal demons about collecting the data. So there is this building consensus that this is going to be an important thing and it is going to be important to coordinate. So that is the timing. So our September meeting, having this document come out then will enable some things to happen after September.
MR. HUNGATE: And so I guess what this means is that we need to coordinate what this recommendation says with that content.
DR. LUMPKIN: Right, and I have not seen that -
MS. JANES: Report?
DR. LUMPKIN: Well, I havenµt seen the recommendation. It was discussed at the last meeting which was about two weeks ago.
MS. JANES: Did I hear you correctly that in addition to the disparities report there is also going to be something coming out from the Population Subcommittee?
DR. LUMPKIN: The Population Subcommittee is going to be coming out with a specific recommendation to the Secretary on race and ethnicity data collection.
MS. JANES: Okay. Is it going to point back to the report or is this going to be -
DR. LUMPKIN: Well, we canµt, because -
MS. JANES: I was just going to say, yes.
DR. LUMPKIN: - the report is not done. So itµs going to point forward to the report.
MS. KANAAN: Are they waiting to release their letter and recommendation until the IOM - so that they would, in effect, be commenting on the IOM report?
DR. LUMPKIN: No, because the IOM report wonµt be out until later this fall or early in the winter.
MS. KANAAN: I see.
MS. JANES: And this is an IOM report on disparities, as well?
DR. LUMPKIN: Thatµs a separate track.
MS. JANES: Right. But that is the topic?
DR. LUMPKIN: Right. There is an IOM report on - actually, itµs within the department, the use and collection of race and ethnicity data within the department.
MS. KANAAN: So itµs the Population Subcommittee document that is coming out in the fall.
DR. LUMPKIN: The report will be coming out probably for the November meeting.
MS. KANAAN: Okay.
DR. LUMPKIN: The letter will be coming for full committee review in September.
MS. KANAAN: Okay.
MS. HOLMES: But, John, we donµt know what the - or youµre not - you didnµt see what the specific recommendations are?
DR. LUMPKIN: I know the gist of them will be that the NCVHS supports the collection of race and ethnicity data by managed-care plans, but what the specifics are, whether or not it refers to the 837, as our document does, I donµt know.
MS. JACKSON: Not that I know of, at this point.
DR. LUMPKIN: So it may be more general.
MS. JACKSON: Yes.
MS. JANES: Why are they focusing on managed-care plans? Because of the gist of what the disparities report is going to say?
DR. LUMPKIN: I donµt know that it does focus in on that. It may just say in healthcare.
MS. JANES: Okay.
MS. HOLMES: Yes, I donµt - you know, we are now in the process of reviewing for the department both the quality and the disparities report, and neither one of them reports specifically on managed care.
DR. LUMPKIN: Yes.
MS. JANES: That was why - I was wondering if they split it out by -
MS. HOLMES: No.
MS. JANES: - by product line. No -
MS. HOLMES: They split it out by insurance data. So thatµs just, you know, Medicare, Medicaid, private, uninsured and so on.
MS. JANES: And what is the current data on the percentage of the population that is insured by managed care, if you define managed care as being fully capitated? Itµs low. Itµs under 50 percent, isnµt it?
MS. HOLMES: Yes. No, itµs low overall.
MS. JANES: Yes. I havenµt seen those numbers in a while. Okay. At any rate, just -
MS. KANAAN: So in terms of how we go about harmonizing this, would you recommend showing them this text and asking them if they are comfortable with this, something as simple as that?
DR. LUMPKIN: I think the thing to do as we are moving this forward - weµre not shooting for the September meeting for this.
MS. KANAAN: Not for an approval, but -
MR. HUNGATE: Review.
DR. LUMPKIN: Review.
MR. HUNGATE: Review.
MS. KANAAN: Original talk was about getting a draft before the committee.
MR. HUNGATE: A draft.
DR. LUMPKIN: You know, I think, to the extent that just when you present it to the committee you say that you want to make this consistent with that recommendation, and youµll see that before the committee meeting. So youµll know whether or not you even need to make the statement.
MS. KANAAN: So it doesnµt even have to be - not anything in advance.
DR. LUMPKIN: Right, because it is sequential.
MR. HUNGATE: Okay.
MS. JACKSON: And I assume I would be sending this on to either Vicki or the Population - you know - after our meeting. So they would have this information as well.
DR. LUMPKIN: Right.
MR. HUNGATE: Yes.
DR. LUMPKIN: Now, Marjorie was at -
MS. JACKSON: The Populationµs discussion -
DR. LUMPKIN: - Populationµs - So that may just be - you could just touch base with her to show her the language and see if there is a - they donµt have to be the same. We just donµt want them to be contradictory.
MS. JACKSON: Right.
MR. HUNGATE: Right.
MS. JANES: And they have been drafted, I assume, the recommendations or at least are 80 or 90 percent drafted.
DR. LUMPKIN: I donµt know the status of the letter. I have not seen a draft, so I assume that whatever is working isnµt -
MR. HUNGATE: Right.
DR. LUMPKIN: - that well developed yet.
MS. JACKSON: In our plan, based on the Executive Subcommittee discussion at the last meeting, was to try to get information out to the Executive Subcommittees before the full meeting, so they would - the people would have had a chance to look at something.
MR. HUNGATE: Right.
MS. JACKSON: Rather than have something right there at their plates.
That must be Kathy.
MR. HUNGATE: Kathy.
MS. COLTON: Yes, itµs me.
MS. JACKSON: Hi.
MR. HUNGATE: Welcome.
MS. COLTON: Can you hear me?
MS. JACKSON: Yes. Can you hear us?
DR. LUMPKIN: Can you hear me?
MR. HUNGATE: Kathy, weµll let you know who is here. Susan Kanaanµs on my right. Bob Hungate here. John Lumpkin on my left.
MS. COLTON: Are you still on break?
MS. JACKSON: No, weµve just gotten started.
MR. HUNGATE: Weµre working. Stan Edinger.
MS. JACKSON: Debbie Jackson.
MR. HUNGATE: Debbie Jackson.
MS. ROWELL: Pat Rowell.
MR. HUNGATE: From the Nursing Association, and on the phone call with you I think are Eduardo. Are you there, Eduardo?
MR. ORTIZ: Still here.
MR. HUNGATE: And who else?
MS. HOLMES: Julia Holmes.
MR. HUNGATE: Good.
MS. HOLMES: NICHS.
MR. HUNGATE: And thatµs whoµs here.
And what we have done, we have talked about the personal identifier, under Standard Identifiers on page 4, and have added some wording to the second piece, which says develop a voluntary, standardized patient identifier or patient-identifier logic that, when authorized by the patient, can be used to link healthcare records for the same patient across payers, providers and care settings, and more wording will follow that, which goes into more of what is involved in the complexity of that subject.
And we have moved back to page 1 on the recommendations, have started talking about race and ethnicity data.
There will be a letter coming from the Population Subcommittee relating to this, and staff at HHS, et cetera, will look at the meshing of those two, so that it is reasonably in balance before the September meeting.
And we are ready to go on to the second recommendation under Data Content Issues.
MS. COLTON: So is someone capturing the edits for me?
SPEAKER: Yes.
MS. COLTON: Okay.
MR. HUNGATE: All right. The next recommendation is primary language.
I think probably the best thing to do is just read through these and see what comment and discussion there is after each one to get a sense of where we are.
MS. KANAAN: Just a question. I understood John to say, when you first were talking about harmonizing things, that it was Recommendation 2 as well as 1 or did I misunderstand you?
DR. LUMPKIN: I donµt know what the recommendation is for populations. It may just be race and ethnicity or it may include language.
MS. KANAAN: So weµll just have to watch again for that?
DR. LUMPKIN: Right.
MS. KANAAN: Okay.
DR. LUMPKIN: Kathy, what is the thought on why we are just focusing on 834 as opposed to the 837?
MS. COLTON: Because - I donµt think you need to collect it every time a patient goes in for a visit, and if it is in the 834, I guess the only reason for having it in an 837 would be to have it for people who donµt have heath insurance, you know, who would have a claim submitted potentially to a public health data center, a discharge data set, because they wouldnµt be submitting it to a payer, if they donµt have insurance.
DR. LUMPKIN: Well, now, if someone is - is the 834 - it is used by a payer to a - Iµm sorry - to a purchaser to a payer?
MS. COLTON: Itµs an enrollment in a health insurance plan. Itµs the form for enrolling in a health insurance plan, not just an HMO. Itµs any health insurance.
DR. LUMPKIN: So if I am going to be an individual subscriber -
MS. COLTON: Correct.
DR. LUMPKIN: - then I need to - I would complete this 834.
MS. COLTON: Yes, you would -
DR. LUMPKIN: Or my agent would.
MS. COLTON: Usually through your employer or through Medicare or a Medicaid agency or even as an individual, non-group subscriber.
DR. LUMPKIN: And if, in that encounter, while Iµm filling out that form, I then have no clue why they are asking me about what my language preference is, my primary language, but, now, I am - you know, I have been engaged in my community organization with a program called Hablamos Huntos(?), which is one that we do at - Johnson, and I find out that that is really important to let people know. I donµt correct my 834, so thereµs really no way to capture that.
MS. COLTON: Actually, you can. You can change any information on your enrollment form at any time. Most health plans offer you that opportunity. People change from individual to family coverage or they change their names when they get married and they change their addresses when they move. So there is a change process, but it uses the same transactions.
DR. LUMPKIN: So my provider could give me the opportunity to change my form while Iµm there to visit.
MS. COLTON: You would call your health-insurance plan to do it.
DR. LUMPKIN: Okay.
MS. COLTON: Or go online. You know, a lot of plans are online.
MS. JANES: Kathy, I remember one of the discussions around this issue of 834 versus the 837 was access to data that are on the enrollment form, and I seem to remember Marjorie making a fairly passionate case for the fact that, in many cases, the 834 data simply werenµt available at the point of care. Who is the usual owner of the 834 data?
MS. COLTON: It is the health-insurance plan and also the employer, the health-plan sponsor who is usually an employer.
MS. JANES: My familiarity with this revolves around working with the big automakers who are, of course, self-insured, and I know in that instance the enrollment data was all with the automakers and the health plans didnµt have it, but I donµt know what the situation is if itµs not that kind of a self-insured situation. Then it would actually be with the health plan? They would collect it and hold it?
MS. COLTON: The health plan would have it, even - I mean, even if it is an arrangement where the employer is self-insured, if, in fact, they enrolled the employee in a health plan or the employee chooses to enroll in a health plan, health plans have self-insured arrangements with employers. In other words, the health plan provides the services and processes the claims and then bills the employer for the cost of those claims. So the health plan isnµt carrying the risk.
So there are two arrangements. You know, one is that what is often called administrative services only and which others call self-insured managed care, because then those programs include a lot of the care-management programs of the HMOs as well as the administrative services or they could be fully insured, meaning the health plan bears the risk, but in any of those situations, the health plan has the enrollment information, and so does the employer or a plan sponsor.
MS. JANES: And I guess this was the issue that came up was was at least - and this is - again, I freely admit it is anecdotal, but at least in the instance of the automakers, this issue came up specifically with a project we were doing, and it turned out that the automakers sent the race, ethnicity data to the health plans - this was true for both Ford, Chrysler and GM - and the health plans, almost to a one, did not populate the field for what appeared to be a variety of reasons, but it was not available at the health-plan level.
MS. COLTON: That makes sense, because they didnµt have a standard transaction -
DR. LUMPKIN: Right.
MS. COLTON: - at that point in time, and every plant did their own thing.
DR. LUMPKIN: But let me sort of take it one step further. If I am a provider and this is a field that is - a conditional field - is that the right term?
MS. COLTON: Situational.
DR. LUMPKIN: Situational field. So if the information is available, and I am completing the 837, which my information system is going to do that by pulling in data off of my -
MS. COLTON: Your practice-management system -
DR. LUMPKIN: Yes, my practice-management system, because itµs not going to be my electronic medical record, but every patient is going to have demographic information that goes onto the 837.
The only way to ensure that the provider actually pays attention to this or has that data is by putting it on the 837. Therefore, their own administrative data system would seek to capture that field.
MS. COLTON: Yes, thatµs - I mean, if you are trying to create an incentive for the individual provider to collect this information, then I think the only lever you have is the 837.
DR. LUMPKIN: Right, which would -
MS. COLTON: So that is the goal that - yes, youµre right, you would want to ask to put this on the 837 as well.
DR. LUMPKIN: Right. Because there is clear evidence that the - even Hispanics, there is a significant disparity between Hispanics whose primary language is Spanish versus Hispanics whose primary language is English in outcomes in care.
MS. COLTON: Right.
MR. HUNGATE: Okay. So -
SPEAKER: So add the 837?
MR. HUNGATE: Add 837?
MS. COLTON: Okay. So you want to modify this to really read just like it does on the race ethnicity one.
DR. LUMPKIN: Correct.
MS. COLTON: Except that they canµt be - you want to make them required fields on the 837? On race and ethnicity, I made them required fields, and that is because it is provider reported.
DR. LUMPKIN: Right.
MS. COLTON: And you donµt need the permission of the patient to report what you perceive to be the race. I mean, hopefully, the providers are actually asking the patients, but we know that is often not the case.
DR. LUMPKIN: Then, you know, I think it would probably happen in exactly the same way. If someone speaks with an accent, they may ask them. If they speak with no accent, then they probably wonµt.
MS. COLTON: Okay. So we would, then adopt the same wording as the race and ethnicity -
DR. LUMPKIN: I think so.
MS. COLTON: Okay.
MR. HUNGATE: Which makes it required for the 837?
MS. COLTON: Yes.
DR. LUMPKIN: Yes.
MR. HUNGATE: Okay. Any other discussion on Recommendation 2?
MS. JACKSON: So do you still keep that final clause, conditioned on the enrolleeµs willingness, if you make it a requirement?
DR. LUMPKIN: I think we just do it the way it says in Recommendation 1.
MS. JACKSON: Okay.
DR. LUMPKIN: I mean, you can actually even just collapse those two into one recommendation.
MS. KANAAN: Hum. What do you think about that, Kathy, collapsing them into one?
MS. COLTON: Well, it cuts down my number of recommendations.
MS. KANAAN: The only reason for leaving it would be if you want to give a little more prominence to the primary language. Will it get lost if it is part of the same -
DR. LUMPKIN: No, I think you say race, ethnicity and primary language data.
MS. COLTON: I think there may be less push back on the primary language than we may get on the race, ethnicity, and Iµm thinking not so much even from the providers or the plans and from communities of color, because there was a lot of divisiveness in the testimony we heard from various advocacy groups, and all representing different minority populations, about collecting that race, ethnicity data. We didnµt hear that kind of concern about the primary language, knowing that communication is really important.
MR. HUNGATE: Um-hum. It is an important distinction. I think that might be enough to keep them separate.
DR. LUMPKIN: Okay. Letµs only raise some red flags that we have to raise.
MR. HUNGATE: Okay. Letµs go on to the third recommendation, Test Results.
Comment? Suggestion?
I think I wonµt read them all. We read at different speeds. Itµs easier to read ourselves, I think. Listen.
If there are no comments, Iµll assume general acceptance and weµll move to the next one.
MS. JANES: Can I make one small suggestion?
MR. HUNGATE: Sure, please do.
MS. JANES: Just in the next-to-the-last sentence, where we talk about the priority health conditions identified by the IOM, certainly, in this instance, my recollection is this particular IOM report is actually called the Priority Health Conditions or uses those terms, but just in our discussions today, we have talked about at least three different IOM reports, and so I think, particularly for those who donµt have them all, you know, in the tips of their fingers, it might be useful to just put the title -
MR. HUNGATE: Specific.
MS. JANES: - of a given IOM report in parentheses -
MS. KANAAN: Weµll reference it.
MS. JANES: - when we refer to it.
MR. HUNGATE: Good.
MS. KANAAN: Yes, thank you. Yes, that is a good suggestion.
MR. HUNGATE: All right. Recommendation 4, Vital Signs and Objective Data.
MS. COLTON: Iµm assuming you would have the same comment about inserting the name of the report.
MS. JANES: Yes, um-hum.
MR. HUNGATE: Question for Eduardo, really, you talked yesterday about a clinical minimum data set, in effect. Is that related in any way to this Recommendation No. 4?
MR. ORTIZ: I think it could be. I mean, you know, depending on how you interpret minimal data set, and John had, you know, some good ideas on that as well, in terms of the card(?) and this kind of identifier data. I think this could be part of that as well.
MR. HUNGATE: This is the place where, it seems to me, that we have the - if you will - crossover between the administrative data set and the clinical data set most likely to occur.
MR. ORTIZ: Right. I agree, and this may be kind of a good opportunity to kind of fold in the idea of that kind of minimal data set or whatever you want to term it.
The other thing, just to let you know, is when we recently had that expert meeting with about 45 stakeholders in terms of guidance on how we should spend our IT money next year, this came up as a strong theme as well, that we needed to - not necessarily for funding a project, but in terms of that we need to find ways to be able to take advantage of the administrative transactions that occur and fold in clinical data that is necessary for quality improvement, and, also, I think this feeds in a little bit with some of the activities I was telling you about earlier like the inventory care patient safety thing with Leap Frog and CMS and AHRQ, because we are looking for data that could be captured fairly easily through administrative queries.
MR. HUNGATE: I have a feeling that we are going to need to make this very much situational, where it is going to vary a lot, based on the specific kind of condition that is involved.
MS. COLTON: I did say situational data elements in the first sentence -
MR. HUNGATE: Yes.
MS. COLTON: - because I think that whenever you have a situational data element, you have to define the conditions under which it is required. That is what situational means. It means this data element is required in the following situations, and so that is why I coupled this with identifying clinical outcomes that were tied to priority health conditions for which you would want to get these.
So, basically, what would happen is letµs say a priority health condition is morbid obesity or diabetes or whatever where the issue of height, weight and CMI are considered important outcomes to track, then, if a claim came in with one of those diagnoses, it would expect these measurements to be provided.
The issue right now, with these types of measurements, is they donµt even have the T codes because they are not procedures. So there are two steps that would have to occur. The appropriate data standards organizations - they would have to assign appropriate procedure codes and then the transaction folks, the ANSI folks, would have to create the data elements to carry those codes. So itµs a different steps after they get the funds.
MR. HUNGATE: Okay. Well, I think it is important that we have that discussion in this section of the report, so that what it means is clear.
MS. COLTON: Well, it would be in Section 3 is where the details would all be.
MR. HUNGATE: Right.
MS. COLTON: Not in the recommendations.
MR. HUNGATE: Yes.
MS. COLTON: So, you know, someone reading the report will have heard why this is important, just, you know, how it could be done.
MR. HUNGATE: Right.
MS. COLTON: Then the recommendation is brief and the rationale would be very short.
MR. HUNGATE: Fine.
MS. COLTON: It would pick up the key points from Section 3.
MR. HUNGATE: Fine. Because that also says that in Section 3 we are carrying the recommendations there as well, right?
MS. COLTON: Right.
MR. HUNGATE: Yes. Okay.
MR. ORTIZ: And I donµt know if you put this in, but I think that the use of examples like you just stated - for example, diabetes, why it is important to collect blood-pressure information, BMI information, you know, medication information, whatever we are going to pick on as the stuff - I think that would be very useful in terms of presenting a couple of examples in the document itself.
MS. COLTON: Make the argument, right.
MS. KANAAN: But I assume you mean in Section 3, in the findings section, not along with the recommendations.
MR. ORTIZ: Right. In Section 3.
MS. KANAAN: Yes.
MR. HUNGATE: Right.
Okay. Recommendation 5, Secondary Admission, Diagnosis -
MS. COLTON: This one, we talked about the last time. So itµs more a wording issue.
MS. HOLMES: Is this to differentiate secondary diagnosis or just charge diagnosis from complications?
MS. COLTON: Correct, and that is really what would go in the rationale.
MS. HOLMES: Right.
MS. COLTON: So the complications and whole morbidity that developed during the course of the inpatient stay.
MS. HODGES: All right.
MS. COLTON: And differentiation of that were present at admission.
MR. HUNGATE: Okay. Other comment?
Functional status?
No comment?
Healthcare Quality at State and Local Levels?
MS. HOLMES: I just might add that you might reference Health U.S. as one of the major federal reports that tracks progress on healthy people.
MS. COLTON: So say federal reports, such as Health U.S.?
MS. HOLMES: Yes.
MS. COLTON: Okay.
MR. HUNGATE: Okay. Data-Standardization Issues, Recommendation A, Standard Clinical Terminologies.
DR. LUMPKIN: We should probably put some reference to the Snowmed piece in there, and I forget the wording, because it is really Snowmed piece of the clinical meta-thesaurus or something like that.
MS. COLTON: There is a name for that meta-thesaurus that the NLM has developed. I was glancing on it when I -
DR. LUMPKIN: Right. There is a name for - they are not just calling it Snowmed. Itµs Snowmed Something Something Something.
MR. HUNGATE: Okay. So the discussion in the body will develop that - right? - get the right terminology?
MS. COLTON: I think we can do that in the body
and I do have Secretary Thompsonµs announcement all about Snowmed. I donµt know the details, but I think I have enough for what we would need to put into Section 3.
What I wanted to raise as a question is Snowmed is very much a clinical terminology, in other words, understandable to health-care professionals and not necessarily to lay persons. When we talk about an electronic health record, which would also be acceptable to the patient and where patients might also provide
information, it seems to me that we need to develop lay synonyms for a lot of these things. So we need to incorporate that concept in here as well.
DR. LUMPKIN: Well, and I would argue that we would need more than lay synonyms. We would need to have a whole set of lay synonyms that would be culturally appropriate.
MS. COLTON: Correct. Correct. Iµm just saying we need to broaden it beyond the Snowmed.
DR. LUMPKIN: Yes.
MR. ORTIZ: And we had some of that conversation yesterday at the NHII meeting about that exact same issue that came up, and we discussed a lot of that, just in terms of the terminology, but lots of other issues involved. So I think that is an important point that I think we are definitely going to be addressing.
MS. COLTON: For those of you who were there and heard that discussion, if you could send me some language that would get at that point that I could work with in Section 3, that would be very helpful, because I would like to make this consistent with where the NHII is headed.
MR. HUNGATE: Eduardo, could you do that?
MR. ORTIZ: I donµt have the stuff, so - and I canµt do it today, and Iµm leaving town next week. So I could do it when I get back.
DR. LUMPKIN: Yes, I donµt think that there was anything that was -
MR. ORTIZ: Yes, I think it was just more of a discussion. It wasnµt anything - but John would know whether it was officially captured or transcribed.
DR. LUMPKIN: Iµm sure there is a transcription. I have no idea when that would be available, but I think the key issue is that if we get the right language for the Snowmed as purchased by NLM, and then mention that patient-accessible records have to be -
MS. COLTON: Understandable.
DR. LUMPKIN: - understandable.
MS. COLTON: And, therefore, these terms have to also be translated into culturally-appropriate terminology that patients can understand.
DR. LUMPKIN: Right.
MR. ORTIZ: Right. And we went into issues in terms of like user, interphase and other issues as well. I donµt know if we would want to capture that. I think your statement probably captures that.
DR. LUMPKIN: Yes, I donµt think we want to get that complex here.
MR. ORTIZ: Right. I agree.
MR. HUNGATE: Okay. That is adequate, I think.
MS. COLTON: And that is important, because I did put in patient surveys also as one of the areas, and so that was kind of lay terms with the importance of that.
MR. HUNGATE: Thanks for joining us, John.
DR. LUMPKIN: Thanks.
MR. HUNGATE: Good trip home.
DR. LUMPKIN: Bye-bye, everyone.
MS. JANES: Do those exist? Are there existing compilations of lay synonyms for clinical terminologies across various terminologies. Kathy, do you know that?
MS. COLTON: I donµt know. I mean, I certainly know that when I have worked on surveys on particular topic areas, we have actually gone out and talked with a lot of people to try to find out what do they call these things, how would they recognize it.
MS. JANES: Yes.
MS. COLTON: And that when you are talking about something like diabetes, you know, talking about sugar, what sugar does itµs a very important thing to include. So I donµt know that anyone or organization or anybody has compiled this.
My best guess would be to go to the folks who are involved with the Health Literacy Project and see what they know about this area. You know, thereµs this whole project that has been funded by Pfizer. They have a website called and that may be a good place to look to see if there is any such thing, but if there isnµt, it needs to be developed.
MR. HUNGATE: Iµm struck by this as a potential hearing agenda, where thereµs a mix of software developers, health-literacy-content people. You know, if this is going to work well on the personal-health dimension of the NHII, thereµs a lot of people that are going to be involved in making it occur.
MS. COLTON: Right.
MR. HUNGATE: And getting that highlighted in a hearing might be an appropriate action for this organization.
MS. COLTON: Yes, I think some of the disease-management vendors who have online tools for patients -
patient-education tools - have had to deal with this, but, you know, any organization that deals with patient education, and there are a number of them out there that do this. So, you know, some of them are even public-interest-type groups. So I think you could cast the net pretty wide and get some good information.
I know that in some of our own surveys there are a few conditions, a few very specific conditions where the only way we have been able to get at this with consumers is almost to discuss the constellation of symptoms, because doctors donµt tell the patient that they have congestive heart failure. Itµs too scary, and so patients would not recognize that term, in most cases, or many cases at least, and even shortening it to heart failure is still scary.
So, we are going to run into a few areas where it would be really interesting to know how that challenge has been dealt with.
MR. HUNGATE: Itµs interesting that sometimes you have to be a little scared to take action, too.
MS. COLTON: Yes. Thatµs true.
MS. JANES: I guess the only thing that occurs to me is that given the fact that from what I hear you saying - that there is no existing listing of culturally-appropriate lay synonyms -
MS. COLTON: No, Iµm not saying there isnµt. Iµm saying I donµt know of it.
MS. JANES: I guess, rather than sort of mixing that issue in with - I mean, the issue, as it is stated now, is standard clinical terminologies, which is actually something different.
I guess what I might suggest is that you add a separate - perhaps just a separate statement at the end in which you sort of refer to an ideal - you know, ideally, standard clinical terminology should also be made available in culturally-appropriate, lay-sensitive terms. Something like that.
MS. COLTON: I donµt want it to be an afterthought. I mean, as far as I am concerned, this really needs to be bundled together, because if it is going to work for electronic health records and personal health records, and if we are going to use patient surveys, we are going to have something that is workable for patient surveys, this whole movement - and I want to - you know - kind of get on that train to move to a common vocabulary and have to have that as part of the scope, not as an afterthought.
MR. HUNGATE: I would agree with that. I would like to put it in a phased way, though, in terms of saying that you have to first get standardized clinical terminology and then you worry about the translation. So it seems to me it is a two-step process.
MS. JANES: I agree -
MR. HUNGATE: I wonder, also, if we shouldnµt be thinking in terms of patient survey as an inclusive term that includes, if you will, feedback from an electronic personal-health record that one of the surveying methods is going to be the collection of patient-submitted information, which is condition specific.
MS. COLTON: Thatµs right.
MR. HUNGATE: And so maybe we need to articulate to survey includes potentially collectible information from the personal-health dimension. Is that appropriate or inappropriate?
MS. HOLMES: To just clarify, Kate, that rather than just think patient surveys think patient surveys about particular clinical conditions or about their clinical condition?
MS. COLTON: Iµm not sure what youµre getting at exactly. I mean, that is what I intended, and if that is not that clear that I wasnµt just talking about like patient satisfaction surveys, but the whole intent was - because this is under clinical terminology - that it would surveyed about clinical conditions.
MR. HUNGATE: Thatµs fine.
MS. COLTON: If all you are saying is add that phase, thatµs fine. Thatµs easy to do.
MR. HUNGATE: Iµm not sure that what I am saying makes any sense. So letµs just disregard it and go ahead. I think that what youµve got there is fine.
MS. KANAAN: I want to pose another question because, although, Kathy, I hear your reasoning about bundling this, very clearly, I can also see some merit to having an entirely separate recommendation about all these things that you have been talking about about making sure that terminologies are developed which are comprehensible to patients. Does that warrant an entirely separate recommendation, do you think?
MS. COLTON: I donµt want to separate them completely.
MS. KANAAN: Okay.
MS. COLTON: What Iµm happy to do is make this two bullets as was suggested - change the heading to Standard Clinical Terminology/Vocabulary and refer to the patient part more in the vocabulary term, but they have to be linked, because there has to be a crosswalk.
MS. KANAAN: Good. I like that idea because it wonµt get lost.
MS. COLTON: Yes.
MS. KANAAN: Okay. Letµs work on that.
MR. HUNGATE: There is quite a bit more development in the body than will show up in the recommendation itself.
MS. JANES: I mean, these are two, I think, very different issues at very different levels of development, and so, among other things, I wouldnµt want people to go to this issue of culturally-appropriate lay synonyms and say, oh, my God, we are miles from that, and sort of dismiss the whole issues. Whereas, the other issue is one that is quite front and center at this point.
MS. KANAAN: Or the other way around either.
MS. JANES: Exactly. Exactly.
MS. KANAAN: Well, weµre already almost there.
MS. JANES: Right. They are both very important
but they are really a different -
MR. HUNGATE: So the body will articulate there is more work to be done.
MS. JANES: Yes.
MS. KANAAN: Yes. Good.
MR. HUNGATE: All right. Can we move to Recommendation 9? Very straightforward. I happen to support it fully.
MS. COLTON: I thought it might be wise to add a sentence at the end of this one. As I was going through some emails - Iµm on a - list serve, and thereµs a bunch of inquiries going around right now about ICD-10, because HIMA(?) has recently sent a letter to the Secretary urging the Secretary to move forward on adopting ICD-10-CM, and so the second sentence I was recommending is conduct the impact analysis recommended by the MCDHS Subcommittee on Standards and Security and develop a plan for implementation of ICD-10-CM by the end of 2006.
That seems to be consistent with what both the industry and vendors are saying about the time period they need to make the transition, as well as what the Standards of Security Committee is saying about the need to understand what the impact of this is going to be on organizations that have to switch from nine to 10.
MS. KANAAN: I thought they already did the - or they are doing the impact analysis, arenµt they?
MS. JACKSON: They are doing it now, and -
MS. COLTON: They are doing it now?
MS. JACKSON: Yes, and when the Standards and Security - when Dr. Coleman sees this, then he will have a chance to have input into the updated language, if that is what you want to keep in here. So weµll have a chance to get feedback.
MS. KANAAN: But just to show that the right hand knows what the left hand is doing, it should say complete, I think, rather than conduct. Donµt you, Kathy?
MS. COLTON: Yes, thatµs fine. I didnµt know if it had actually been started.
MR. ORTIZ: And, you know, just my own thing, you know, end of 2006, my God, is three whole years. They built the Hoover Dam almost that fast. Can we push it a little quicker and say by the year 2005? You know, people will do what they have to do.
MS. JANES: Well, Iµm assuming that you didnµt pick 2006 out of the air, but that it was consistent with what you are expecting to see -
MS. COLTON: I think - since one is that - you know - by the time this starts to review, we are nearing the end of 2003. So letµs assume weµve got an impact analysis, you know, done, and a plan for the transition by the beginning of 2004. I think what Iµm comfortable changing the wording to is to make it clear that I meant that - not that the plan would be completed by 2006, but that the adoption would be completed by 2006.
MS. KANAAN: What about - given that we can assume that this has been done, what about changing it to say, based on or with reference to the impact analysis commissioned by NCVHS develop a plan? And then it wonµt be ambiguous what you are referring to with the date. Do you see what Iµm saying?
MS. JANES: Is there any sort of estimate of rollout time that is incorporated into the impact analysis?
MS. COLTON: Well, all the testimony - I mean, Standards and Securities took a lot of testimony on this issue already, and most of the vendors, the software vendors that are going to have to make the changes in the software that will be necessary to accommodate these codes because they are moving to additional digits and alpha-numeric, when, in fact, they used to just be numeric. So these are major software changes, and then the plans of the people who buy the software and upgrade have to adopt that and conduct the upgrade.
So the time frame from the time that the - and an NPRM has to be put out. I mean, everything has - that whole process has to evolve. So the vendors are saying two to three years. So that is why I thought end of 2006 was actually even maybe a little aggressive.
MR. ORTIZ: Yes. I guess I just take a different approach of, you know, itµs important that people think we should be switching to ICD-10, and if we are going to do it, you know, letµs push it as far as we can, and as an entity, I would - Iµd push - I mean, you know. Doesnµt mean the people are going to do it, but just a recommendation.
MS. COLTON: I think HHS can decide to do that, but I thought our role was to take input from the public at large.
MS. JACKSON: The Standards and Security Subcommittee is working - the intimacy with this is - you know - is just right there. They are going to be presenting some - I think a letter at this meeting. So as soon as they see this letter, Dr. Cohn, and others, they will flesh it out, so it is in alignment with where they are going.
MS. COLTON: Yes, I mean, if they pick an earlier date, weµll go with the earlier date. If they pick a later date, weµll go with that.
MR. ORTIZ: But Iµm just saying, so if we are putting in a recommendation, then my two cents worth is I would push for something a little quicker, because, I think the more time we give, the longer itµll take to do it. So that would be my recommendation.
MS. KANAAN: Letµs just revise it, even in this draft, even though the Standards Subcommittee will massage it so that itµs not ambiguous what verb the phrase by the end of 2006 refers to. I think you can just refer to the impact analysis and then it will be more clear that by the end of 2006 applies to developing a plan for implementation by the end.
MS. COLTON: Right.
MS. KANAAN: Now, I realize it is still ambiguous. You want the implementation by the end of 2006, not having a plan.
MS. JANES: Right. Because that is what Kathy - In fact, what you might do is - because what you said, Kathy, was one year to completion of a plan, plus two years to roll out, equals three years.
MS. COLTON: Well, I wasnµt thinking -
MS. JANES: So if you want to just clarify -
MS. COLTON: - a whole year for completing the plan. I was thinking, you know, in order to go through the NPRM process, I was assuming that would all happen in 2004, so that maybe by, you know, September or so this time next year there would be a leg(?) -
MR. HUNGATE: What if we -
MS. COLTON: - and like a leg was part of compliance by the end of 2006.
MR. HUNGATE: What if we deal with this by saying implementation by - put in a bracket - date to be established in coordination with Standards and Security, right? You know, so that - because we probably canµt do that here. Letµs just pass it to where it belongs and do it that way. Is that all right?
MR. ORTIZ: Good.
MR. HUNGATE: Okay.
MS. COLTON: Susan are you going to come up with some wording on these?
MS. KANAAN: Yes.
MS. COLTON: Okay.
MR. HUNGATE: You heard that enthusiasm, right? .
All right. No. 10.
MS. COLTON: This is the controversial one, the most controversial, probably, even maybe more than the individual identifier.
MR. HUNGATE: Yes, I think - but if it is not a single-procedure coding, it is certainly a crosswalk coating.
MS. COLTON: Right. Which doesnµt exist now, either.
MR. HUNGATE: Which doesnµt exist. So I think itµs a clear need. I wouldnµt be inclined to back off on the recommendation.
MS. JANES: Did you want to add that as an either/or the crosswalk issue?
MS. COLTON: I would just say at a minimum - we could add a sentence at the end and say, at a minimum a crosswalk should be developed.
MS. JANES: That is kind of a punt position, isnµt it?
MS. COLTON: - and impending procedure systems. We could say, adopt ICD-10-PCS, it adds, you know, just another layer of complexity in it.
MR. HUNGATE: Well, if the players in the game are, in a sense, obligated to crosswalk, then they have to use the same definitions, and that would achieve what we need and doesnµt pick sides. So Iµm inclined to try to work in that direction.
MS. COLTON: Yes. I mean, my understanding is that there have been attempts to develop crosswalks between CPT HCPCS and ICD-9, Volume 3, and that, you know, there isnµt a one for one. There are many areas where CPT is much more specific, and you lose that specificity going to ICD-9, and there are some areas where it actually goes the other direction, a few.
I have no idea if anybody has tried to do this with ICD-10-PCS. You know, Pat Brooks or somebody might know, but I donµt.
MS. KANAAN: So is the group agreed that we should add the sentence about the crosswalk?
MR. HUNGATE: Yes.
Okay? Number 11, Standard Survey Items for the Same Quality Measures.
Ready to proceed to Data Linkage Issues? Number 12.
MS. COLTON: I was waiting to see if anybody else said it.
MR. HUNGATE: Okay.
MS. COLTON: One possible modification to Recommendation 11, because it is very broad, and I didnµt know if it might be more reasonable to put some starting point or - I donµt want to say boundary, because I would love to see it be done comprehensively, but given that I am talking about coordinating with states and with private sectors, I mean, itµs very big. So I thought it might warrant a sentence that says something like begin with quality measures identified for the National Healthcare Quality Report and National Health Disparities Report and federal reports for tracking progress on - Iµm sorry, and measures for tracking progress on healthy people to 2010 goals for the priority health conditions identified by the IOM. So it is sort of following that theme that I had put in some of the other recommendations.
MS. JANES: What were the first ones before you talked about the healthy people survey?
MS. COLTON: I said the National Healthcare Quality Report and -
MS. JANES: And the Disparities. Okay.
MS. COLTON: - the National Health Disparities Report.
Itµs a modification of the wording in one of the earlier recommendations, and it is limited to the priority health conditions identified by the IOM, but I have worded it not as a boundary, but as a beginning, to say begin with.
MS. HOLMES: There is one possible problem with that, Kathy, and I hadnµt actually thought of it before, is that some of these measures that are currently in this first iteration of the Healthcare Quality Report and the Healthcare Disparities Report may change over time, but that is a possible impediment.
MS. COLTON: Well, I didnµt want to say Version 1 of the National Healthcare Quality Report. I was thinking more of the grid that had been developed for where ARC wants to go with those reports, you know, but there were lots of gaps. When we held a hearing back in July of ?02, we were presented with a framework for that report and a lot of different measures and there were there a lot of empty cells(?).
MS. HOLMES: Right. I was talking to the fact that perhaps even an extant measure, you know, could change in terms of the wording specification, and it is likely to change, given, say, changes in clinical guidelines. I mean, that is another issue.
You know, for example, you know, what is considered appropriate screening for a certain type of cancer, that will change based on new evidence-based, you know, practice. So that would be another reason that would cause current measures that are within those grids for which we have even current measures might change over time.
MS. COLTON: Yes, I donµt think this precludes stuff changing over time, because - I mean, if you standardize something across all the surveys this year and next year something changed in the care - in the clinical recommendations, it would be a lot easier to just say, you know, here are all the surveys that use that, change your wording to this, and then they would all be standardized again.
MS. HOLMES: But I think that some statement should be made associated with this recommendation that standardization considers the fact that clinical guidelines for quality may change so that when we talk about standardized measures that means that they would change in concert with changes in clinical guidelines.
MS. COLTON: Okay. I donµt want to get too detailed in the recommendations. Would it suffice if I said begin with quality measures included in current and future National Healthcare Quality Reports and Disparities Reports? That would account for the fact that those -
MS. HOLMES: What about using the word consensus-based, consensus-based measures? That is one of the criteria for inclusion in both the quality and the disparities report, suggesting that these are measures that are agreed upon and that, you know, itµs understood that they may change over time.
MR. HUNGATE: Let me suggest an approach here that says that we would develop the body - Section 3 development of this recommendation more fully than probably we have so far, and hold the summary of that until our next review of this.
MS. COLTON: I would agree.
MR. HUNGATE: Do the body work, put in a statement here that is reflective of this discussion, to the extent that you can, and then weµll proceed on it the next time.
MS. COLTON: Okay. Letµs do that. I just hesitate on the consensus of it. Whose consensus?
MR. HUNGATE: Yes, I think weµve got more work to do here than we probably have time allowed in this meeting. So letµs develop the body and then see where we are.
Data Linkage Issues is the next category, and the first of those was the standard-identifier issue. We dealt with the second half of that earlier, and Susan has the wording of that, for future reference.
So the first is to implement the National Provider Identifier Standard, National Provider File. Is there any discussion there?
If none, how about Recommendation 13, Interoperability of Clinical Data Systems?
MS. COLTON: I have some minor wording change to that, because I noticed an inconsistency with sometimes I said EMR or electronic medical records throughout the document, beginning with 13 and going through. I wanted everything to say electronic health records or EHR, if that is okay with everybody.
MR. HUNGATE: Okay.
MS. COLTON: So do the terms that are used actually in both the IOM report and recommendations and the HIMS recommendations.
MR. HUNGATE: Sounds good to me.
MS. JANES: Again, it might be nice if you explicitly pointed - put a pointer in there to the HIMS and the IOM report.
MS. COLTON: I have them referenced in 15 and 16 - are you talking about putting in a URL or what?
MS. JANES: No, actually - well, if there is a website for the HIMS - in other words, for somebody like me, I didnµt know that HIMS had something, and so it would be - if I was reading this, the first thing I would want to do is look at the recommendations, and so it would be nice to put maybe a URL.
MS. COLTON: Okay.
MS. JANES: - if there is one - or even -
MS. COLTON: Yes, there is. Yes, I can put the URL.
MS. JANES: And, again, the IOM report, which IOM report?
MS. KANAAN: But you would do it up at Recommendation 13, rather than waiting to 15? And then once you do it you can just -
MS. JANES: Exactly. I would actually just go ahead and put a footnote the first time you refer to it.
MS. KANAAN: Okay.
MR. HUNGATE: That, again, is in Section 3, probably, right?
MS. JANES: Yes.
MR. HUNGATE: - your reading it.
MS. JANES: But, actually, Iµd leave that to the editor in terms of how you thought it would -
MR. HUNGATE: Sure.
MS. COLTON: Yes.
MR. HUNGATE: Okay?
MS. COLTON: Yes, I think youµre right. It belongs in Section 3 with the detail.
MR. HUNGATE: Okay. Privacy Protections.
MS. COLTON: I had one suggested modification.
MR. HUNGATE: Okay.
MS. COLTON: My own. In the last sentence, the one that says, revise at time regs. I would change that to revise and or clarify current regulations.
MS. COLTON: Sometimes the obstacle really just results in some confusion or difference of opinion in interpretation.
MR. HUNGATE: In the body, will there be some examples of those kinds of things?
MS. COLTON: Yes, I could give you a real good example.
MR. HUNGATE: Thank you. That is appropriate.
MS. JANES: That is actually nice, too, because I think ·clarifyº is less likely to sound alarms than revise.
MS. COLTON: I can give you an example which will be, I think, very pertinent that the plans are coming up against right now.
MR. HUNGATE: Good.
Okay. Functionality Requirements for Electronic Health Records.
Clinical Decision Support.
MS. COLTON: Again, this wording would be for electronic health records.
MR. HUNGATE: Yes.
MS. COLTON: And I added the word ·data-entry templateº, as opposed to just entry template.
MR. HUNGATE: Okay. That is in the third sentence?
MS. COLTON: Yes.
MR. HUNGATE: After guideline-driven?
MS. COLTON: Guideline-driven, data-entry templates.
MR. HUNGATE: Data-entry templates.
Okay. Other comment?
Population-Based Query and Reporting?
MS. COLTON: Again, these would all say EHR.
MR. HUNGATE: Yes.
All right. Is that recommendation okay as stands?
MS. JANES: I guess my only question is is that Iµm a little surprised to see patient registries grouped after care-management systems, rather than a little further on down under things like Population Health Assessment and disease surveillance. I guess I donµt think of patient registries as the logical connection. I donµt think of them as being as links to -
MS. COLTON: Well, it depends on how you are thinking of the patient registry, because if you look at the Improving Chronic Illness Care Project, a lot of the pursuing-perfection work that is going on at the institute -
they all are very driven by patient registries that create reminder systems, some things like that.
MS. JANES: Say no more.
MS. COLTON: As opposed to registries that are like tumor registries.
MS. JANES: Yes, that was the first thing that I was thinking of, but, yes, you are right. Ed Wagnerµs chronic-care model and stuff.
MS. COLTON: Exactly. Exactly.
MS. JANES: Okay. Got the picture.
MR. HUNGATE: Okay. Good.
I think I understand better where the flash points of the recommendations are. I feel like we have dealt with most of those and we are on sound fitting with what we have here.
MS. COLTON: Thatµs good to hear.
MR. HUNGATE: In view of that, it seems to me that our next work effort can probably be conference-call driven in review of the document itself, prior to the next full committee meeting. And I think we had tentatively picked a date for that.
MS. JANES: The conference call.
MR. HUNGATE: Well, completion of the next draft of the quality report we thought might be the 25th of August.
MS. JANES: Thatµs good for me.
MS. KANAAN: Whose date was that? (Laughter).
MR. HUNGATE: I think it was from earlier discussion. Maybe itµs now no longer appropriate.
MS. KANAAN: Well, itµs really up to - the primary writing now is Kathy, so itµs Kathy who -
MS. JANES: And my piece.
MS. KANAAN: And Gail.
MS. JANES: Right.
MS. COLTON: I had actually thought that a lot of this time that I spent on these recommendations I would be working on Section 3. So not that it is wasted, because all of this gets incorporated into Section 3, but, you know, given some of the discussion today, I think I need to do a little bit of research on some of these topics to flesh them out, like the patient vocabulary stuff. I think I need a little bit more time for that.
When were you thinking of having a call?
MR. HUNGATE: Well -
MS. COLTON: I mean, I could get something to you by September 8th, thatµs a Monday.
MR. HUNGATE: Yes. That would be fine.
MS. COLTON: Then maybe you could have a call as soon as the 12th.
MR. HUNGATE: The 12th would make sense for me.
MS. COLTON: - which is that Friday.
MR. HUNGATE: That would give us another - well, letµs see, when does the mailing have to go out to the full committee?
MS. JACKSON: Well, thatµs what Iµm thinking about now. In trying to institute a plan, Kathy, so that the Executive Subcommittee will get a chance to see a version - not the final version, but an acceptable version of the various documents that are coming for review or action - in this case, it will be action - but still review, since there are some significant components here that effect other subcommittees and working groups I was going to try to get the material out to the Executive Subcommittee the first week in September.
SPEAKER: Right after Labor Day?
MS. JACKSON: After the holiday, right.
MS. COLTON: Would they be content just getting the recommendations documents?
MS. JACKSON: If youµre okay with them getting - you know - even this material - I donµt know. That has always been the conflicting point. What is the comfort level of the group in releasing something when you are in the process of editing and changing and getting - you know -
MR. HUNGATE: I think that we will have more productive discussion if they have the recommendations in the context of the text of Section 3.
One of our reasons for going back and in vetting them was in order to have that contextual information there to help, and so I am concerned about trying to move recommendations without the supporting discussion.
Now, we are not trying for approval of the report at the September meeting.
MS. KANAAN: So why not just let the whole committee look at them at the September meeting, rather than having the - why would the subcommittee need to get them before?
MS. JACKSON: Well, that one point from the Standards and Security, definitely needs to be seen, as well as populations. I mean, both of those have very definite intersect points.
MS. COLTON: How about a compromise? How about if by the week of August 25th, we get back to you a revised set of these recommendations reflecting todayµs discussion and including the rationale bullets - in other words, the one or two key sentences from Section 3 that supports those recommendations.
MR. HUNGATE: Okay.
MS. COLTON: For purposes of the Executive Committee.
MR. HUNGATE: If we could augment that with the subset of the text of the body, 3, Section 3, that relates to those recommendations which most need review in the other committees, the Population Subcommittee and the Standards and Security Committee.
MS. COLTON: Iµm not sure what you mean - see, the whole problem is writing all that text for section 3.
So I canµt give you the whole text for Section 3 by that date.
MR. HUNGATE: No. Well, I was asking for -
MS. COLTON: What I can give you is one or two nuggets that are the key arguments, but like I canµt give you things like the example of the - measure that is creating the problem with privacy or - you know what I mean?
MR. HUNGATE: Right.
MS. COLTON: That is a lot of detail. Iµm talking about just giving you one or two sentences of rationale for each recommendation, because the Executive Committee, as I understand it, they are not going to be approving the recommendations.
SPEAKER: No, not at all.
MS. COLTON: - conflict of saying, you know, on this one, you ought to talk to this subcommittee before you move forward on that or whatever. They are going to look for coordination -
MR. HUNGATE: Okay. If we could have the full text of the Section 3 by the September 8th date.
MS. COLTON: Right.
MR. HUNGATE: - that you suggested, that will give a full report to every member of the subcommittees, which facilitates their discussion in the subcommittee meeting associated with the full committee meeting, and I think that is enough, given the time frame that we have established. So I donµt think we need to press for a specific separate Executive Subcommittee communication -
MS. JACKSON: No, not at all.
MR. HUNGATE: - in this case.
MS. JACKSON: Right. That would work.
MS. KANAAN: And what is the date, what is the deadline for getting the draft to you so that you can put it in the agenda books or send it with the agenda books?
MS. COLTON: Yes, I mean, are we going to have a conference call around the 12th or the 15th or some time before the full committee meeting, go over it and make any final -
MR. HUNGATE: I hope we can, but that depends a little bit on when Debbie has to send it out to the full committee.
MS. JACKSON: Weµll probably be getting all the material compiled on September 8th.
MS. KANAAN: September 8th?
MS. JACKSON: On the 8th and then sending it out on the 10th or on the 12th.
MS. KANAAN: So you would really like to have it by the 8th.
MS. JACKSON: Yes, everything really should come in two weeks before.
MS. COLTON: What are the dates of the meeting?
MS. JACKSON: The meeting is 23-24, and two weeks before that is the September 8th.
MS. KANAAN: Why does it have to be so far in advance?
MS. JACKSON: Just copying, printing, binding.
MR. HUNGATE: Well, I donµt mind it going out in that form. We can go ahead and have our conference call in between. Weµll have some suggestions to make. I think that is all right.
SPEAKER: I think, though, that time will go fine.
MR. HUNGATE: So itµll go out in the form that it comes in basically on the 8th. Weµll talk about it then and -
MS. JANES: My suspicion is is that we may end up having a fair amount of discussion, at least with the folks from Populations and Standards and Security, which could end up, you know, causing us to go back to the drawing board on some of these. So, you know, why sweat having it in semifinal form if we think it -
MR. HUNGATE: Right. Yes, we could waste our time by doing too much work -
MS. JANES: Thatµs what Iµm trying to say.
MR. HUNGATE: Okay. So letµs schedule a conference call for the 12th.
[Discussion of logistics of conference call].
MR. HUNGATE: Yes, I think itµs - the presumption is that people will read the report prior to the phone call, highlight areas where they feel a need for further discussion. We wonµt try to do all that discussion. Weµll try to find out how much we have to do.
MS. COLTON: Right. I wonder if there are any showstoppers?
MR. HUNGATE: Right. And if there are some things -
MS. COLTON: - really want to try to resolve before it goes -
MR. HUNGATE: Right. Right.
MS. KANAAN: And I would think even that we need to be even clearer than we tried to be last time that this is not the final draft, that this is for an in-process review. I mean, weµll put a cover sheet attached to it maybe or something .
MR. HUNGATE: Iµll prepare some statement from my viewpoint of that sort.
MR. ORTIZ: This is - Sorry. I missed it because someone was talking to me in here. September 12th or August 12th?
MR. HUNGATE: September.
MR. ORTIZ: Okay. Thatµs what I thought.
MS. JANES: Weµre still aiming for November approval.
MR. HUNGATE: Approval.
MS. JANES: Right.
MR. HUNGATE: Right.
MS. COLTON: I think we may also want to give a heads up to Standards and Security, NHII and Population that we are anticipating that between the September and November meeting - and privacy and confidentiality, as well - that we would like them to discuss any sections of this report that they feel need to be better coordinated with their own initiative and make recommendations to us, so that we can incorporate those into the version that would go out for November.
MR. HUNGATE: I would think that would be part of the discussion at the full committee in September.
MS. COLTON: On the scheduling, there is not a lot of time between the September and November meeting and if they know by the Executive Committee meeting - which I guess is earlier - that we are going to be asking this of them, they may want to set up their own conference calls. It would give them a little more lead time.
MR. HUNGATE: Sure. Okay. Iµll take that suggestion to heart, and when there is an Executive Subcommittee conference call prior to the meeting Iµll bring that up.
MS. KANAAN: You know, I think it might be useful, if weµve got the time to do it now, to review the timetable between September and November, because, as Kathy points out, it is going to be very short. If you need the document two weeks in advance of the November meeting, that gives us about two weeks or three -
MS. JANES: Thereµs six weeks - I just counted - between the two meetings.
MS. KANAAN: Okay. So that gives us four weeks between - you know - after the September meeting to prepare what we hope to be the final draft.
MS. COLTON: If the other subcommittees are going to request changes we need to weigh in on the changes they request. We really need to do that within that two-week period after the meeting.
MS. KANAAN: Yes.
MS. COLTON: And that is why I was saying I donµt think we can wait ?til that meeting for them to schedule that action.
MS. KANAAN: Right.
MS. COLTON: They need to know ahead that within the two weeks after this meeting they need to get together to weigh in.
MR. HUNGATE: All right. The point of the discussion in the Executive Subcommittee phone call would be to request that in their time of subcommittee meeting, around September 23rd and 24th, that they identify those areas in the report that require that kind of attention and dialogue, so that their input to our process could be forthcoming right after those sessions and not be the subject of a separate meeting or a phone call later on in the month, so that if we then scheduled a conference call around the - you know - say the 10th of October to reflect on what came back from those other discussions, then that would give us enough time to deal with the content before the next meeting. Does that make sense?
MS. COLTON: I was concerned that they may have already planned their agendas for their breakout sessions for September, because it is coming up very soon and they may not be able to fit a discussion of our recommendations into their breakout meeting. So they may have to schedule a conference call afterwards.
If they could do it in their breakout meeting, that would be great. If they canµt, I think if we could give them - you know - until the 8th of October to get back to us with any suggested changes, then you could still go ahead with a call on the 10th.
MR. HUNGATE: Okay.
MS. COLTON: Give them flexibility.
MS. JACKSON: Or maybe even earlier. See, the plan is to get this material out to them electronically on September 8th. So they would have all of this - they would have this in advance, and then they would have it in their books. They would have it in the breakout sessions. The sessions are going to be, generally, the second morning, and, Kathy, you are right. Those agendas are pretty well set as to what their own work products have to be, but they still would be advised of this in such an early time frame that even asking for feedback by October 1, I donµt think is out of line.
So you would have that in advance, far in advance
of a discussion of your own conference call on, letµs say, the 8th or so.
GRACIE: That is a good thought, but Population is going to be working on their report. So Iµm very skeptical about Vicki -
SPEAKER: Well, we can send it to -
GRACIE: Yes, I will send them out to the members.
MS. KANAAN: Her task is pretty simple, I think, because we may be able to just use their language.
GRACIE: Okay.
MR. HUNGATE: Right. Right. I donµt think that is going to be a hard task to accomplish, because we donµt have any need to articulate our own view there. We are going to follow what they come up with.
MS. JACKSON: As I mentioned earlier, Iµll be sending this to Dr. Mays, pronto.
GRACIE: Well, no, I always send her Qualities documents.
MS. KANAAN: So we are going to get inputs from them by October 1st, and then I guess those of us who are involved in producing this report will want to get a draft to you all before the 10th, so that it can be discussed on the 10th?
MR. HUNGATE: Whatµs appropriate.
MS. KANAAN: Yes.
MR. HUNGATE: You name it.
MS. COLTON: Say the 7th.
MR. HUNGATE: Fine.
MS. KANAAN: Okay. And then weµll be aiming to just do final kinds of tinkerings. Youµll have to look at it one last time, I guess.
MR. HUNGATE: One oµclock on the 10th?
GRACIE: Okay. Letµs say one to two?
MS. JANES: October 10, right?
GRACIE: Right.
MS. JANES: Right.
MR. HUNGATE: Thatµs a Friday.
MS. COLTON: If we could do a little earlier that day?
MR. HUNGATE: Eleven would be better for you that day?
MS. COLTON: Well, that is the holiday weekend.
GRACIE: Is it?
MS. JANES: Yes, thatµs true. A lot of people may be heading out of town.
MR. HUNGATE: You want to try to do the prior day?
MS. COLTON: Yes, if we could do the 9th, that might actually work better.
MR. HUNGATE: One oµclock?
MS. COLTON: I can do one oµclock.
MR. ORTIZ: Is September 12th still on, too?
MR. HUNGATE: Yes.
MR. ORTIZ: And October 10th?
MS. KANAAN: And we are already to the next draft.
MR. HUNGATE: October 9th, Eduardo.
MS. COLTON: The focus really is there is the feedback from the other subcommittee.
MR. HUNGATE: Right.
MS. KANAAN: Well, so thereµs a question. Do we want to do our writing before the workgroup has discussed what they want to do with the inputs or do we - should we maybe -
MS. COLTON: Actually, you know, it would be better to have the committee discuss those -
MS. KANAAN: Right. And then do the writings. What about moving the conference call a little earlier?
MS. COLTON: How about the third of October? If we get feedback from them by the 1st.
MR. HUNGATE: All right.
MS. KANAAN: That makes more sense, yes.
MR. HUNGATE: One oµclock?
MS. COLTON: One oµclock -
MR. HUNGATE: My calendar is getting really messy.
MS. KANAAN: Okay. Conference call October 3rd and then draft to the committee by - what is our deadline Debbie, for getting the final draft to you?
MS. JACKSON: For the November meeting?
MS. KANAAN: Yes.
MS. JANES: It was probably around the 20th.
MS. JACKSON: 22nd, 20th, that week.
MS. KANAAN: 22nd. Well, then, do you think we need more than - letµs see. Should we try to get a draft to them? Can we get a draft to them by the COB on the 9th? Writers? My piece is just about done.
MS. JANES: Sorry, a draft to who -
MS. KANAAN: A draft to the workgroup by the 9th.
MR. HUNGATE: That presumes that the other committees arenµt going to have substantive differences that we have to grapple with, and I -
MS. KANAAN: We may have to revise this.
MS. COLTON: Iµd be more comfortable with the 14th.
MS. KANAAN: Okay. You are the main writer, Kathy. So -
MS. COLTON: Yes -
MS. KANAAN: Okay. The 14th.
MS. COLTON: If they donµt have a lot of comment or a lot of changes, then, you know, we can hopefully get it out sooner, but if they do, I want to allow for that.
MS. JANES: And who are we - Iµm sorry. Who is the work group? I think I lost the thread here.
MS. JACKSON: You guys.
MS. KANAAN: Weµre the work group.
MS. JANES: Oh, me. (Laughter).
MS. KANAAN: Weµre the work group. So this is sort of internal review.
MS. JACKSON: Got a little lost there.
MS. KANAAN: Okay. And then, at that point, we can figure out if we need to go around again.
MS. JANES: I got it.
MS. KANAAN: Hopefully everybody will be happy.
MS. COLTON: So thatµs on the 14th of October -
MS. KANAAN: Yes, and so then weµll need to have comments back from everyone by about four or five days later, in order to make any final changes.
MS. JANES: Extremely expeditiously, I would say.
MS. KANAAN: Comments by - I donµt have - Iµm not looking at a calendar. Whatµs the 18th?
MS. JANES: The 18th is Saturday.
MR. HUNGATE: Saturday.
MS. KANAAN: Okay. The 17th? Can you turn it around that fast, you reviewers?
MR. HUNGATE: I think we should.
MS. KANAAN: Yes, okay.
MR. HUNGATE: You know -
MS. JANES: Itµs basically get it out to them on Monday and ask for comments. Get it out to everybody on Monday and ask for comments back by Friday, roughly speaking?
MR. HUNGATE: Because we are not -
MS. COLTON: I think I missed that last exchange. What are you talking about now?
MS. KANAAN: Just clarifying the dates -
MS. JANES: For final comments.
MS. KANAAN: Asking for comments back on the draft that we send to people on the 14th, asking for comments by the end of the day on the 17th.
MS. COLTON: Oh, okay. Great.
MS. KANAAN: So that we then have a few days to do any final changes and get to you by the 22nd, at the latest. Does that sound okay?
MS. COLTON: Okay.
MS. KANAAN: Okay.
MR. HUNGATE: Itµs okay with me. All right. Have we got the plan? So we have a conference call at one oµclock on September 12th.
MS. JACKSON: Right.
MR. HUNGATE: Then there is executive conference call, subcommittee conference call, talking about the need for review by the other subcommittees, during the 23rd, 24th time frame, requesting their commitment for them to provide feedback by the 1st of October, which we then review in a conference call on the 3rd, which is two days later, so that those comments have to have gotten back to the working group.
After that, there is a redraft, which is completed by the 14th and out to working group with comment to come back by the 17th with a mailing to the full committee on the 22nd. Is that consistent?
MS. JANES: Mailing to Debbie and to Gracie by the 22nd.
MS. COLTON: Yes, we deliver it on the 22nd.
MS. JANES: Right.
MR. HUNGATE: Right.
MS. KANAAN: And, Gail, you and Kathy and I will work on - I mean, Iµll have you send things to me, rather than -
MS. JANES: Thatµs what I sort of imagined, was that we would continue to work together, but then work with you as sort of our point of contact, as the collator. Okay.
MS. KANAAN: Good. Well, Iµm impressed that you got through all the recommendations.
MS. JANES: Now, last question - and Susan and I are going to be talking a little bit later this afternoon about my little piece on the current initiatives.
At one point, we talked about opportunities for implementing the recommendations, I think is what that section is now called. Initially, we had talked about reviewing current initiatives in the light of the recommendations. Then we had drifted away from that a bit and had just talked about current initiatives in a somewhat broader context, and one of the reasons was because we didnµt have the recommendations.
Now, weµve got a fairly explicit set of recommendations. Are we back to talking specifically about current initiatives as they relate to these recommendations?
MS. COLTON: I think we should. And I think we probably should, between us, try to identify the list of initiatives that we think need to be covered, and that then you can go off and describe.
MS. JANES: I agree, and some of them, Kathy, I am just going to - I mean, some of them we have already referred to - a lot of them, in fact, are in the report and are just a matter of my sort of pulling them together.
But I think what Iµll do - you and I had talked about talking before you went on vacation, and then I missed that opportunity. I got busy, but I think what Iµll do, as I said, Susan and I are going to talk this afternoon, and then I have actually got - August is relatively quiet for me. So this is a great time. I think what Iµll do is then put together that list of what the initiatives are, and then get back in touch with you. We can talk about those and talk about Phase 2, which is fleshing out those.
MS. COLTON: Right. So one initiative that isnµt mentioned in any of the recommendations, but that I think will be really important is the EHR collaborative.
MS. JANES: You want to tell me a little bit?
MS. COLTON: They actually have a website, and I can give that to you, but it is a group that has begun to collect testimony and input from all over the country about the recommendations to the Secretary on standard functionality for electronic health records.
MS. JANES: Okay.
MS. COLTON: So they are basically taking the IOM and the HIM(?) stuff and saying - you know, putting it out there for the public to comment.
I know that they are holding a hearing in Boston on, I think, the 19th of this month or - actually, I have it in my calendar. They are holding them all over the country, and the Boston one just happens to be coming up pretty soon.
MS. JANES: Do you happen to have their URL?
MS. COLTON: I think itµs ehrcollaborative. - but Iµll send it to you.
MS. JANES: Okay.
MS. COLTON: Because Iµm not positive, but I can email it to you.
MS. JANES: Okay.
MR. HUNGATE: Okay.
MS. KANAAN: Yes, one word here is that if anybody wants to go ahead and look at Sections 1 and 2 - this is addressed particularly to the people who are not writing - you could - that is probably not going to change at all, except for whatever Gail decides - whatever we decide makes more sense in Gailµs section, but, you know, if you want to - I havenµt gotten any comments yet on those two sections, and, you know, the sooner we -
MR. HUNGATE: Yes.
MS. KANAAN: You know, Iµd be glad to have your comments, if thereµs anything that you think should be changed. Thatµs pretty general background. So if you - you know - and it can be looked at in the context of the entire report, when you have it, but it is also something you could get out of the way sooner.
MS. JANES: When we talk about Section 3, we seem to be winding down here. Are we talking about Section 3 in the existing draft?
MS. KANAAN: Well, as rewritten by Kathy.
MS. JANES: Oh, okay.
MS. COLTON: As rewritten. So it is going to all be reordered, reorganized to follow the organization that we used for the recommendation.
MS. JANES: Okay.
MS. COLTON: It originally was organized by data source.
MS. JANES: Right.
MS. COLTON: So it is going to be reorganized into these areas that the recommendations have organized into. It is going to discuss, you know, sort of what is the problem, and then it is going to have the recommendation actually imbedded at the end of that discussion.
MS. JANES: Okay. All right. That makes more sense. I was just curious. Thank you.
MR. HUNGATE: Looking, again, at what I have to make sure that I understand what is what.
MS. KANAAN: Do they even have numbers on them anymore?
MR. HUNGATE: Yes. Section 4 is Recommendations.
MS. KANAAN: Oh, good.
MR. HUNGATE: There are four sections, right?
MS. KANAAN: Yes..
MR. HUNGATE: And we will have an executive summary -
MS. KANAAN: Yes, I need to think about when I am going to write that.
MS. COLTON: Susan.
MS. KANAAN: Yes.
MS. COLTON: When can you have to me a revised version of the recommendations based on todayµs discussions? Because I need those to put into Section 3 and to make sure that Iµve got all the right discussion.
MS. KANAAN: How about the middle of next week? Will that be soon enough?
MS. COLTON: Yes, thatµs fine. Thatµs fine.
MS. KANAAN: Okay. And there are a couple of cases. You have the more precise language than I do, because it is your language, but -
MS. COLTON: Right. I can send you that. I can send you the changes that I described on the phone.
MS. KANAAN: Thatµs a good idea.
MS. COLTON: And I actually put them in a different color -
MS. KANAAN: Oh, good.
MS. COLTON: - see them, and then -
MS. KANAAN: And then Iµll add the -
MS. COLTON: And then youµll have the discussion changes.
MS. KANAAN: Good. Okay. Yes.
MR. HUNGATE: All right. I do not anticipate trying to set an agenda for our next face-to-face meeting in September until after we have had our conference call and kind of know where we sit in terms of how much work weµve got to do.
So I think, unless others have needs we need to cover, that we are finished for today.
(Whereupon, the meeting was adjourned.)