[This Transcript is Unedited]
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C.
DR. LUMPKIN: Good morning. We are going to reconvene, a quorum now being present. Today's meeting is of the National Committee on Vital and Health Statistics. My name is John Lumpkin. I am Director of the Illinois Department of Public Health and Chair of the committee.
We will start out as we do all our meetings. Since we are going live over the Internet, we are going to start off with introductions. I would also like to remind the speakers, as you are speaking and presenting, to introduce yourself so the people on the Internet will know who you are. We will go around and do the introductions at this particular point, so people will know who is here. We'll start off with Debbie, who is --
DR. JACKSON: Sitting in for Marjorie Greenberg, who is fulfilling her civic responsibility and is on jury duty. Debbie Jackson, NCHS.
DR. COHN: I am Dr. Simon Cohn from Kaiser Permanente and I am a member of the committee.
DR. FRAWLEY: Kathleen Frawley. I work for St. Marys Hospital in Passaic, New Jersey, member of the committee.
DR. ZUBELDIA: Kepa Zubeldia. I work for Claredi, member of the committee.
DR. FYFFE: Kathleen Fyffe. I work for the Health Insurance Association of America, and I am a member of the committee.
DR. ROTHSTEIN: I'm Mark Rothstein from the University of Houston, and I am a member of the committee.
DR. SCHWARTZ: I'm Professor Paul Schwartz from Brooklyn Law School. I am a member of the committee.
DR. LUMPKIN: Paul, welcome.
DR. SCHWARTZ: Thank you.
DR. LUMPKIN: New member of the committee. We are pleased to have you here.
DR. MUNSON: I'm Bruce Munson from the National Conference of Commissioners on Uniform State Laws. I am here to make a presentation on state privacy laws.
DR. LUMPKIN: But you notice that we've got you in our lawyer corner over there. Jeff?
DR. BLAIR: Jeff Blair, Medical Records Institute, member of the committee.
DR. LENGERICH: Gene Lengerich, Penn State University and a new member of the committee, and glad to be here.
DR. LUMPKIN: And we are glad to have you. Welcome.
MS. WARD: Elizabeth Ward from the Foundation of Health Care Quality in Seattle, Washington, and I am a member of the committee.
DR. MC DONNELL: Clem McDonald from the Regenstrief Institute in Indiana University, and an old member of the committee.
DR. HARDING: Richard Harding. I am a child psychiatrist from the University of South Carolina and a member of the committee.
DR. STARFIELD: Barbara Starfield from Johns Hopkins University and member of the committee.
DR. SCANLON: Jim Scanlon from HHS, Planning and Evaluation Office, the Executive Staff Director for the committee.
DR. EDINGER: Dan Edinger, Agency for Health Care Research and Quality, staff to the work group.
DR. GUILFOY: Helene Guilfoy, Phoenix Health Systems.
MS. BATTLE: Deena Battle, Magno Systems.
MS. WHITE: Gracie White, NCHS staff.
DR. UPCHURCH: Patrice Upchurch, NCHS staff.
DR. LUMPKIN: Good morning. As we mentioned yesterday, because of a schedule conflict, evidently Nicole Lurie, Dr. Lurie was called to the White House, and for some reason she thought that call was more important than our invitation, so we have rescheduled her to this afternoon. We will be presenting at 1 o'clock.
We are going to start off with reports from the subcommittees, some of the material we are going to move from this afternoon to this morning, starting off with the Subcommittee on Standards and Security. We will go until the scheduled time of 10:45, at which point we will enter into our panel. Simon?
DR. COHN: John, thank you. We have a relatively brief report. There is a lot on the subcommittee's plate. I just wanted to reflect on what we saw and heard yesterday and what we discussed after the initial panel.
As you are all aware, we heard a panel yesterday talking about data issues and concerns related to the implementation guides for the administrative and financial transactions. We heard a presentation by Helene Guilfoy talking about the fact that a lot of the providers may not be collecting all the information required by the standards in the implementation guides. We heard some excellent efforts going on by WIDI and SNIP, processes to try to help the industry in terms of their transition to the HIPAA standards, and then some other work going on trying to map the 837 claim standard to the HCFA 1500 and UB-92, and efforts to understand the differences in data content.
After the full committee adjourned and we convened as the subcommittee, we continued discussions. I think if I could put together a couple of points from those discussions I want to reflect on, one was a reaffirmation of the importance and the value of the administrative and financial transaction rule itself. Everyone felt that as you make the transition, there was value to that transition and there would be value to the industry to continue on that transition.
There was however some concern expressed by a couple of the panelists that some of the implementation guides may be a little too stringent. That is my word, but I think it encapsulates the feelings and views of some of the panelists. Certainly that is just a view from the panelists, and one interest we should note as a committee. We will be eliciting more views and discussing these issues and concerns further in February, when we meet with the DSMOs and others in the industry in our next panel on HIPAA implementation. That subcommittee meeting is for February 1st and 2nd, so we will be bringing some of these thoughts from that last panel. Certainly no conclusions at this point, but just an interesting view that we think the DSMOs will reflect on, and WIDI and others.
In addition, we had some further followup around digital signature. As you know, that is not at this point a planned part of the security final rule. Kepa Zubeldia has been taking the lead on this activity. We held hearings a couple of months ago on digital signature. There are discussions going on now by the standards organizations, and we are hoping that they will be coming back to us in February with some thoughts about what should be suitable standards the standards organizations and perhaps the industry will accept around digital signature. So that is in process, and we are expecting to hear more on February 1st and 2nd.
Beyond that, upcoming shortly is a recommendation that we need to have the -- we are doing a number of things all at once. One is that Jim Scanlon and I are going to be following along the issue around the HIPAA report to Congress, which will be due in February, but will be to you hopefully in an advanced draft in February.
Jeff, do you want to make a comment about PMRI work ongoing?
DR. BLAIR: MRI work?
DR. COHN: PMRI, patient medical record information activity.
DR. BLAIR: What we are focusing on now is developing consensus within our subcommittee on both the areas that we will focus on for the first round of PMRI standards that we would select, and secondly on the criteria for selection of the standards. We will be doing that for the next several months. I think that's all. Thank you, Simon.
DR. COHN: The February 1st and 2nd subcommittee meetings are likely to be a relatively full set of hearings, since we will be talking a lot about implementation issues and concerns with the DSMOs, and spending some time to talk about both digital signature and getting deeper into the PMRI next steps.
I think that is really our report for the moment. We have a very active work plan which I don't want to review at this point, but I'd be happy to discuss it with any of you, if any of you have any questions.
DR. LUMPKIN: Any questions for Standards and Security? Do I understand correctly from your summary of your discussion after we split up that the large discrepancy between what is being electronically stored and the requirements that were presented in the panel, that we believe that those are surmountable?
DR. COHN: You want to open up the discussion? Okay, please go.
DR. LUMPKIN: No, I know we are trying to assess that.
DR. MC DONALD: There was one specific suggestion from a panelist who has been very involved in the process. That was -- I think the word stringent is what I would use. There were more required fields perhaps than there is data in the current systems. Yet currently they get bills out. So one suggestion was to scrutinize the required fields with a very hard eye to see if more of them could be removed as required, so you wouldn't have to send as many fields to have a valid message.
DR. ZUBELDIA: I know the consensus was to take one more look at the implementation guides, to do that additional release of certain requirements that are not required today.
DR. GUILFOY: I think my point was not -- and I wouldn't use the word stringent. We can wordsmith this to death. Not just the required fields but to take a look at the implementation guides as a whole and determine what of that information really is required by the payors in order to adjudicate a claim. The point that claims are currently being paid is well taken, and what is it that we actively need to have in the electronic transmission in order to have that claim adjudicated.
I would stress at this point that the sooner this is done the better, because providers and vendors are going to have to start working together as well as payors, are going to have to start working together three months ago in order to meet the October deadline.
DR. COHN: John, if I can comment, I think the way that I have interpreted all of this is that these are things we heard from the panelists. I think the group that would need to scrutinize any sort of implementation guides are represented by the designated standards maintenance organizations.
So if any activity around scrutinizing those implementation guides was to be done, it would really have to be done by -- they would be the logical and appropriate group to do that. Since we are going to be meeting with them in February, I think it was a reasonable time to at least bring the issue up to them and see what their thoughts were.
DR. LUMPKIN: Barbara?
DR. STARFIELD: A question about requirement for payment. As I read the legislation there is nothing in there that says that you should only get information that is required for payment. It says information that is transferred electronically.
From the point of view of this committee, it seems rather limiting to say that they are going to consider only data that are required for payment.
DR. COHN: Maybe I should respond to that. That is what the point of the transaction is. The 837 is the claims transaction, so the first purpose of the claims transaction is to transmit information that is required to pay a claim.
DR. LUMPKIN: Or to document an encounter.
DR. COHN: Or to document equivalent encounter information. So I think the question at the first level, knowing that these standards are going to be modified and changed continuously off into the future, is, is that the data that is required to adjudicate the encounter, or is all that really required.
DR. STARFIELD: But it doesn't only say financial. It says financial and administrative. Things like quality concerns are administrative, not financial.
DR. LUMPKIN: But I think we need to be careful, because while the committee is concerned about those issues, we need to make sure that the data elements that are being discussed fit within that category. We want to make sure that there aren't -- in trying to move forward to fill those discrepancies, that important data fields are moved from the not required category. I think they all have to be adjudicated in some sort of deliberate fashion.
The point I'm getting at is that the industry is saying that, given the current status of the systems, there are two issues. One is converting current systems to be able to fit into the new structure for electronic data interchange, and the second one is then adding on the burden of automating the data collection or reporting of elements that are currently not being collected.
I think in the process we need to have some sensitivity. This may be something that we may want to look at in a phased-in fashion, where the first step is to translate everything into a standardized format. The second one is then to get to the standardized transaction where the number of fields may increase over a period of time.
But we certainly want to see a smooth transition. We want to make sure that the obstacles that we see to implementation are surmountable, so that we can continue and reap the benefits that we see without someone throwing up such a large roadblock that everything stops.
DR. COHN: If I can comment, in a letter that we approved at the last meeting, we obviously said that we were going to be further exploring this issue.
I certainly don't feel for one that we are done exploring this issue. My hope is that after February, and assuming that we can get the right people in the room for the discussion, that probably after the February meeting we may be bringing to the full committee a letter to the Secretary with our further thoughts on that.
So right now, I think we are talking about things that have not been fully discussed or vetted yet.
DR. MC DONALD: Just a further comment. This is the panelists, and if I didn't have it right, some of them are here now so they can correct me. But there were 67 data elements that are not currently on current electronic forms, that are now required. This could be actually a torch to the whole process.
So I think it is not a minor issue, is what I picked up from the comments. It could really cause a backlash against the whole HIPAA process if we are not careful.
I also sensed a great sense of urgency. We can't take action that the panelists would like. It is a task, but if we could encourage -- to make a statement without going to the Secretary, if we would encourage this SDO, this X-12, to take a very hard look at the implementation guide and make it as streamlined as possible, would that be helpful?
DR. GUILFOY: Yes, and I would strongly encourage the committee to ask X-12 and its partners, all the members of X-12 which are the payors, to take a look at what they actually need to have in the information that is exchanged.
I think Dr. Starfield made a good point, that this is not just adjudication information. There is other information that is some stuff that is required. The point is, if we don't have it, it is going to take us four to six months to implement and upgrade to a system, which means that we have to have the software in place six months before October of 2002. That is where the time crunch comes into place, because to change these vendor systems is a very time consuming process for them.
So if we can at least look on the front end of what is it that we need to have, and we need to do that sooner rather than later. I would suggest that February -- with all due respect, Simon, February may be pushing the envelope. If we then turn it back to X-12 in February and say, go back to your membership and see what really needs to be done, they are not going to come back for three to four months if they can come back then. Then we turn it over to the vendors to provide the software upgrades. That is really pushing the timetable.
DR. ZUBELDIA: What is happening here in X-12 is that the implementation guides are being used as a mechanism to correct business practices from the past. In that light, some of the requirements make perfect sense in a perfect world, but today the claims are being paid in an imperfect world, and some people feel that some of the requirements require them to change the entire system, and that is not administrative simplification, that is complication. Simplification would be to take what we have today and automate it, and then let's work on fixing the system.
So the task is very big, and I'm not sure that by changing tracks right now it is going to be beneficial.
DR. LUMPKIN: Kepa, I'm not sure I understand what you were suggesting. I was with you all the way up to the end.
DR. ZUBELDIA: I am having second thoughts about asking X-12 to change the implementation guides unless it is just to ask them to make some -- release some of the requirements and minor changes to the implementation guides, because any substantial changes to the implementation guides is going to be seen as changing tracks, and I think that is going to be detrimental to the whole process.
There are some minor tweaks, like there were two data elements that we discussed yesterday, the provider specialty and the payor sequence code. If those are the two problems, if they can fix those two problems and move forward, that may be a positive thing to do. But if there are no problems like that, it may be easier to just continue the way they are. I don't know, I'm not sure about that. We have to ask them.
DR. GUILFOY: Let me just address the issue of payor sequence code. Payor sequence code is not currently required on the existing paper claim, but every provider -- I can't say every provider; most computer software systems that I have seen store the primary, secondary and tertiary payors. Those particular data elements are currently stored in the system.
So if it is stored in the system, we can get it into whatever form is needed. The point was made yesterday that it is not on the paper claim, which is a true statement, but the fact is, that information is stored so we can get it there. It is a problem with the information that is not currently stored. Taxonomy code is a code that is not currently stored in the system.
DR. LUMPKIN: I am hearing that there is a problem, and I am hearing that there needs to be a solution. But what I am not hearing is that we are in a position to recommend a solution at this particular time.
DR. COHN: I'm not fully, first of all, convinced that there is a problem. I would like to hear from the DSMOs their thoughts about what we heard. I think it is reasonable, since we are going to be coming in February to alert them to what we heard as an issue, asking them to come back with some responses. Certainly, part of it may be for them to look through their implementation guides to see if there is anything that they can do to streamline it. I think that is a very reasonable thing.
But once again, my concern like Kepa's is that you don't want to reopen everything. I don't think that is to the benefit of the health care industry, to have them reopen everything. But it is more like, we heard this, what are your thoughts and responses in relationship to that.
DR. LUMPKIN: Jeff?
DR. BLAIR: I have a perception here, and please validate whether this is correct. By the way, I agree with you; I think there is some real concern if we at this stage start to wind up visiting the implementation guides.
The perception that I have that I would like some feedback here is that although implementing the financial and administrative transactions and the code sets that relate to them might be a challenge for many organizations, the areas where there is the real exposure is the medium and smaller health care institutions that are financial under a great deal of pressure and have prioritized their resources in terms of very short term immediate needs. They perceive this to be something they can delay.
The other piece coupled with that is that there are many smaller vendors that are installed in these health care institutions, and these vendors are trying to survive and many of those vendors are not stepping forward to update their systems to be HIPAA compliant.
So if these perceptions are correct, and I'd like some feedback as to whether or not the rest of you share this, that that is the most severe concern, then it may be helpful, if it is possible for us to hear not from the major vendors and not from the major health care institutions, but those that are struggling, to see if there is any additional either WIDI SNIP can do or we could do or HHS can do, or some other entity can do, that could help ease their way or help them.
I would like a little bit of comment to see whether articulating something that other people share as a concern.
DR. GUILFOY: John, let me just make one statement. The implementation guides are not frozen. The implementation guides change twice a year.
That was part of the discussion we had yesterday, was that as we have tracked fields through the various -- data elements through the various permutations of the implementation guides, there have been additions and deletions from the implementation guides.
All I'm asking for at this point is that X-12 take a look at their latest rendition of the implementation guides and determine whether or not things are in fact needed.
DR. LUMPKIN: We have a proposal from the subcommittee on how they are going to approach that. I guess at this time, what I am looking towards, rather than continue this discussion in the full committee, is to see if there is a proposal for changing our approach, and if we have a motion to do something differently.
DR. FRAWLEY: Just to follow up on your comments, the subcommittee did discuss this extensively yesterday, and has a plan to move forward. I don't think we need to re-live our three-hour meeting here in a condensed version for the full committee, but I think Simon has a very clear plan of how we are going to proceed for our February meeting.
I think that obviously, these issues need to be explored in greater detail at the subcommittee level, and we will appropriately come back up to the full committee at the appropriate time.
DR. LUMPKIN: And if the communication to the DSMOs is -- I think we need to communicate that we are very concerned about this particular issue, so they understand the importance. That will certainly give them a heads up as they are looking at the revisions of their guides, what the issues are out there that we are at least hearing, whether or not we have fully established -- or whether or not the committee will recommend any subsequent changes. Kathleen?
DR. FRAWLEY: I did not make this comment yesterday, but I think it is something that the whole committee might want to be aware of.
This is an observation, but it is important. The standards setting process itself might have some inherent flaws, in the sense that there are not cost benefit analyses done, or even a cost analysis of how much it is going to cost to change software systems for every additional data field. The people who tend to go to the technical meetings that develop the standards are not necessarily the ones who are high enough in their organizations to consider budget and what it is going to cost.
That has caused a backlash in the industry among payors, among providers now, that has been exacerbated by the Y2K issue, how much this whole thing is going to cost, and it could potentially slow down the overall implementation, because people are very, very concerned about the cost.
I think the originating problem, because the folks involved in setting the standards did not consider the cost. That is something that I think we have to think about and re-address in the future as we go on with this process, because I think it is a flaw in the standards setting process itself.
DR. LUMPKIN: But it may be a flaw in the standard stetting process, but as I can remember on a number of occasions when we have had internal committees within state government, if you don't send the right representative, then it is very hard to argue against the results.
Clearly, the message as standardization occurs is that it is important, it has positive benefits, and all aspects of the industry need to take it seriously. And certainly, as we get closer to the implementation, that wake-up call will come.
There are still a lot of entities that still don't know what HIPAA means. I think the whole issue -- and the message to the industry is, it is time to pay attention to it, and not only pay attention to HIPAA, but pay attention to the standard development process, because it will have implications down the road.
DR. COHN: I would second what you said. I also was going to observe that all processes are human and therefore are flawed. Everybody gets to make up their own standard, and so they are stylized. Obviously they are streamlined, but we've got 400 of them and every provider has reams of documents that indicate for which payor what is filled out.
So what we have done is exchange that for greater uniformity, and right now we are in the process of trying to make that transition. So it is not perfect. I think the DSMO process which now includes both payors and providers, and all the standards groups should help make this happen in a much more effective process in the future.
DR. LUMPKIN: Well, I think we have a plan. I see no motion to alter that plan.
DR. COHN: And I presume the committee will give me leave without official letters to communicate what we have just discussed to the appropriate DSMOs.
DR. LUMPKIN: Yes, I see no disagreement with that. Is Joy here? We will as part of the orientation, perhaps working with staff or working with the standards committee, we probably need to send a set of acronyms to our new members and some of the old members, because they keep on throwing ones. As I am struggling with pronouncing ICIDH which was my challenge yesterday, you all will get used to that unfortunately much quicker than you probably hope.
The next item is an analysis of state privacy laws. We are going to start off with Joy Pritts, who by sitting over there has moved away from our little area that we had secluded for our lawyers. I'm sorry, that has been a running joke since yesterday, because they just happened to be all placed in the same corner. It was not intentional. But anyway, we welcome you and also Bruce Munson from the drafting committee. I guess we start off with Joy.
DR. PRITTS: Good morning. I have been asked to talk to you this morning a little bit about the state health privacy laws. The way I am going to address that is, first of all I'll talk a little bit about how things are now with the current state of affairs, and then I'll turn to talking a little bit about what activity is going on at the state level. In particular when I turn to that issue, I would like to address in detail the health information component of financial information of privacy regulations, which we can expect to hear a lot about in the upcoming year.
It is somewhat tangential to health privacy, in that it is not exactly a health privacy law, but it is a very important component because it does address the health information in a financial setting, which is very important from a patient and a provider's point of view.
In July 1999, the health privacy project released this report, which is the state of health privacy on uneven terrain. I'm not going to read the entire thing for you today. I will talk a little bit about the key findings that are in this. If you do not have your own copy of this bestselling document, you can get it on our website, which is http:www.healthprivacy.org. It is now located under the state laws section. You will have a handout today which is a copy of our key findings, but we have updated our website, so it is at state laws now, not under resources.
DR. LUMPKIN: Is that under one word, healthprivacy.com?
DR. PRITTS: It is one word, yes. What we found when we did this report in reviewing the laws of the 50 states is that most states legislate by entity under any number of potential topics. It is difficult to summarize these state laws that deal with privacy. They are all over the place. You can look in every nook and cranny in a state code and find them. They are often found in licensing provisions for health care professionals or health care institutions. You will also find provisions in the Freedom of Information sections that deal particularly with health information that is maintained by state governments or local governments.
You will also find them in, surprisingly, the evidentiary codes. It may seem that those sections should be isolated to just issues of evidence, but often when you read the topic itself and you read case notes underneath that, it is clear that the law was intended to have a broader scope than to just used within a legal setting.
The reason you find these state laws in so many different sections, and it is hard to summarize them, is because for the most part, they are not intended -- they were never intended to be comprehensive. As issues come up, the states legislate. As I said, licensing is often one of the areas where you will find these.
One area is HMOs. When they became prevalent, then you would find a section in a state code that would deal with HMOs, and how those organizations are to deal with confidential medical information. States recognize that HMOs are a slightly different entity than a sole practitioner.
You will also see a lot of development along what we call condition specific regulations and laws. What we mean when we use that term is that the state was trying to address a particular health concern of that state, such as HIV/AIDS. Years ago it was tuberculosis. That is an issue which has unfortunately returned to the public arena.
In these areas of public health concern, what the states have generally done is, they have required reporting of certain health conditions, and in order to encourage people to report and to get health care, attached to those conditions usually are requirements that the information be kept confidential. Depending on how sensitive the health information is, the restrictions can be quite intense on how that information can be dealt with.
The states as the federal government until very recently have not generally kept pace with the changes in health care delivery and health care technology. When you read most states' codes, there is this underlying assumption that there is a doctor-patient confidentiality which is true, but when you base a law on that, they are kind of assuming that there is this one kind of doctor-patient, one on one relationship. That kind of relationship is really in the minority these days. There is increase in the integrated delivery services in health maintenance organizations, as I had mentioned earlier.
State laws are also by far and away based on paper recordkeeping. As we know, that is quickly changing. There are some states that in fact require records to be maintained in a paper format.
The states also don't account for the electronic maintenance and transfer of electronic information. Those bring in different issues than paper records do. You don't have the kind of security concerns with the paper record that is kept locked up in an office that you might with information that is being transferred over the Internet.
So the result of all this is what we have always referred to as a patchwork of legislation, not only between or among the states, but also within a state. You can go to any -- if you looked at the whole range, it would be all over the place. In one state you might find protections that cover records that are held in a doctor's office, but you wouldn't find any protections in a statute that governed hospital records, or a chiropractor's records. You could go to a neighboring state and find the direct opposite. You can go to a state and find that a patient is given access to their doctor's records, but you will find no prohibitions on disclosure of that medical information on the flip side of the coin. So it is a kind of patchwork assemblage of laws that leaves a lot of gaps.
One example of this that I think is pretty telling is the way the states treat patients' right of access to their own medical records. We have always seen this as an important concept of privacy, the right to see and copy and control your own records to what extent is possible for a health care consumer.
Thirty-three states have statutes granting the patient the right to access to their own medical information, that is maintained by doctors. Thirty-six states grant that right to medical information held by hospitals. They are not the same 33 and 36 states, necessarily. Only 15 states have statutes that grant people the right to see their records that are maintained by pharmacists. Some states specifically state that pharmacists are not considered to be health care providers. They see them as retail personnel, more.
That may have been true many, many years ago, but in today's health care delivery system, that is no longer true, when you have pharmacists dealing with formularies and the interaction of so many different drugs.
Two states have absolutely no statutory right of access. This doesn't mean that there is not an ethical obligation on a doctor for instance to provide a patient with a copy of their records or to see their records when they request it. That ethical obligation is part of the AMA code of ethics. But there are a lot of health care providers who are not governed by such detailed codes of ethics. So it is important to have a statutory right as well as this ethical right. Otherwise you have very little recourse if you can't get your hands on your medical records.
This might seem like something that shouldn't be that much of an issue. But I can assure you that as medicine is changing, particularly in certain areas, this is becoming more of a problem, because some health care providers see medical information as being proprietary in nature.
We have heard of cases where a woman was going for IVF treatment, was unsuccessful at one clinic, and wanted a copy of her information to take to a new IVF treatment clinic. The first clinic did not want to release the information on the basis that it was proprietary. I think that you might see an increase in that if there isn't a definitive right to those records.
Since we have talked about the norm, I'd like to talk a little bit about the exception to the rule. Most states have this patchwork of regulations. There are a few states such as Hawaii and California that have fairly comprehensive laws that seem to have taken the time to evaluate where we are today and what the needs are today, and have tried to cast as broad a net as possible.
Having said that, I also have to say that Hawaii has suspended its medical information privacy law, because it was having trouble implementing it, so it is suspended for a year.
Maine, which also enacted a comprehensive law, had the same difficulties about two years ago when it enacted its law, and it also suspended it for a year, to try to make the fit a little bit better with practical operation.
What we see happening right now is, there are a few states such as New York and Vermont that have actually proposed comprehensive health privacy laws that are not really moving anywhere at the moment, but they have at least considered what needs to be done on that front in an overall fashion.
What you see more often is what we have seen in the last year, which is what I call nibbling at the edges. The states will go in and they realize they have a problem in a specific area, and then they will try to fill in that area.
One area that a lot of people have had problems with has been getting their contact lens prescriptions. So you have seen states passing laws granting people specific access to their optometrist's records so that they can get those prescriptions, obviously another monetary incentive there at work.
In the last year, other than some of these random filling in the gaps, what we have seen a lot of are states passing regulations and statutes in two specific medical areas. Those areas are genetic information and domestic violence. The reason we see a lot of activity on this front is because of requirements in HIPAA. HIPAA places certain requirements on insurers as to how they may not discriminate against people with certain conditions, and how they may not -- for purposes of determining eligibility and how they may not use those conditions as a pre-existing condition in certain circumstances.
The states as I'm sure you are all aware are in charge of implementing the insurance provisions of HIPAA. What we have seen happening is, states have used this as a springboard. They not only do what HIPAA tells them to do, they take it a step further. They say to the insurance companies, not only can't you use this information in a specific fashion, you also may not disclose it beyond your organization. If you have the information in your possession, you may not use it for other purposes.
A good example of that is Alabama in May of this year. They passed a bill prohibiting discrimination based on domestic violence, and they also prohibited the insurers from disclosing such information except for, and they have a specific list of individuals and corporations that the insurer is allowed to disclose that information to.
So what you see is this piggybacking on the HIPAA requirements. We can expect to see more of that, because all the states have not yet implemented their HIPAA anti-discrimination provisions. I understand that there was a survey done recently by HHS to try to determine who was doing what on that front, so there I would expect to see a lot more activity actually on that front in the coming year.
Another area, are you familiar with the Gramm-Weech-Blyley Raise of hands? I see some are and a lot of people are not. I'll give you a little background on it and tell you why it raises concerns among people who are concerned with the privacy of health information, and then I'll tell you a little bit about what the states are doing about it.
The Gramm-Weech-Blyley Act was enacted in November of 1999. It is also known as the Financial Services Modernization Act. It removes longstanding restrictions and encourages the affiliations between banks, insurers including health insurers, and securities firms.
There has never been any law prohibiting those institutions from sharing information, but what this act does, it encourages them to form one large business. One of the key components of this business is -- the idea here is that this is supposed to be one-stop shopping for financial services.
One of the key elements that you have in order to have that one-stop shopping is sharing of information, financial information. It includes all information that is gathered about an applicant for a financial service. A financial service includes health insurance or life insurance. So if you provide information to apply for health or life insurance, that is considered financial information. It also includes information which is generated during a financial transaction. So coming at it from a different direction, if you have a credit card transaction in which you are paying health care services, that includes health information. That is financial information. You are paying it with a check or with a credit card, but you can often identify what somebody is paying for with those transactions.
I know at the end of the year, I get a statement from my credit card company that details my expenses by category. It can include a category of health care expenses, which might include payments to somebody like an oncologist or an HIV clinic, something that somebody might be a little bit sensitive about.
So you have health information not only in the hands of the insurers, but you have health information also in the hands of the banks. Ideally under the Financial Services Modernization Act, if these two companies were affiliated, they would be allowed to share that information.
There was a lot of concern expressed about this, particularly about the health information component of this. As a result of that, a privacy provision which is contained in Title 5 was put in the Gramm-Weech-Blyley Act.
Before I turn to that Title 5, I think that it is important to know how -- I know this is a little bit complicated, but it is important to understand how this all works and why you get the states doing the action. When they are going to be regulating how these companies share the information, you have three different kinds; you have securities firms, bank type firms and insurance firms. What they did in the Gramm-Weech-Blyley Act, they adopted the functional regulator model. Securities activities will be regulated by the SEC, which is a federal regulatory. Bank functions will be regulated at the federal level by the federal regulators such as the FDIC.
There is no federal insurance regulator, so that function falls to the states. So it will be the states who will be regulating the insurance functions under the Gramm-Weech-Blyley Act. That approach is maintained in Title 5 of the Financial Modernization Act.
As a consequence of that, the National Association for Insurance Commissioners has drafted a model regulation. That model regulation will apply to all insurers, which includes more insurers than are covered under HIPAA, because it covers health insurers, for example, which are covered by HIPAA. It also covers life insurers and comprehensive insurers, so it is a broader range there.
Under the NAIC model, they differentiate between health information and financial information. Health information is given a more protective treatment. The sharing between affiliates and non-affiliates is treated the same under the model regulation. They would require affirmative consent from the consumer to share your health information, which is a much stronger requirement than at the federal level. There are of course a long list of exceptions to this opting requirement, which includes things such as disease management and utilization peer review. They are not trying to make things so difficult that these companies cannot function.
The target effective date of these regulations is July 1, 2001, so you can see that the states will be acting in this area with all due haste in the upcoming year.
The model states for its interaction with HIPAA, they intend that if an insurance licensee complies with HIPAA, they will not be subject to the specific health provisions in the model regulations. As for other existing state laws, for instance, many states have adopted the uniform insurance information protection act, those will not be pre-empted by -- or are not intended to be pre-empted by these model regulations.
We have been told that this is considered a priority item by state insurance regulators, as are some of the other requirements under the GLBA. New York has actually promulgated its regulations already under this act, and although they initially deviated from the NAIC model and had watered them down some, the latest version which should become final in about 30 days adopts the NAIC model fairly closely, and in fact implements some additional standards.
So where we are today with the state of state laws in health privacy is, we still have a patchwork, and the states are following up on these federal regulations that exist. We understand that many states are putting their activity on hold until the HIPAA privacy regulations are finalized with dual intent. In some states they intend to fill in the gaps and in other states they would like to adopt laws that are similar to the HIPAA regulations so they can enforce them on the state level.
Thank you.
DR. LUMPKIN: Thank you. We'll hear from Mr. Munson and then we'll have questions and comments from the committee.
DR. MUNSON: Thank you. I'm Bruce Munson from the National Conference of Commissioners on Uniform State Laws. Thank you for having me here today.
Just a little background on what the NCCUSL is. It is the conference that has existed for the last 110 years. It is made up of delegates from the 50 states, typically law professors, judges, private practice lawyers and legislative lawyers such as myself. I am the reviser of statutes for Wisconsin.
What the conference does is examine areas where state laws are inconsistent and then establishes a drafting committee to get testimony from interested parties and try to devise a uniform act that could be adopted by the 50 states. Our best known product is the uniform commercial code.
That is a very successful product, and it is enacted by 49 states. Others are not so successful. For example, the act that we are currently in the business of revising is the Health Care Information Act. That act was adopted by only two states, Washington and Montana.
So that was in 1985. The Conference has determined that it would be beneficial perhaps to revisit that act. They established a drafting committee to revise the Health Care Information Act, of which I am the chairperson.
What are the reasons for this? Much of the reasoning behind this decision have been ably laid out by Joy Pritts. I would summarize some of our concerns in the following way.
Enforcement of a federal statute is not going to be as thorough as enforcement of state statutes, in our view. There just are not the number of federal agents that could spread out among the states and get their hands on enforcing these regulations that are soon to be coming out of Health and Human Services. Even if there was an adequate level of federal enforcement of these regulations, there are so many ties to state laws that of necessity have to be examined. You've got civil procedure laws, you've got your hospital procedural regulations. Different states have different mechanisms for peer review, for cost review. Of course, insurance laws differ from state to state. So there are of necessity going to be a wide net of connections between the enforcement of this federal regulation and the state laws of the several states.
So that is a driving reason why the Conference still believes that even in the presence of the new regulations that there is a good reason for having uniform state law.
What has the states' reaction to this been? As I have said, only two states enacted the 1985 act. The reasons for that tended to be concerns about the limited scope of the '85 act. Perhaps there was concern about -- it is difficult to prove a negative, but perhaps there was concern about the level of security that was provided by the act for this information. Now certainly 15 years after the fact, technology has drastically changed the way that medicine is practiced and how health care records are maintained.
Having done that, I'd like to discuss some of the issues that the Conference has been looking at regarding this proposed revision of the Uniform Health Care Information Act. I would also like to briefly summarize what the current posture of the act is vis-a-vis the Conference.
The Conference meets every year. In between meetings, the drafting committees do their work. In order for an act to get promulgated by the Conference, it has to be read line by line at two annual meetings. There is a first reading and a final reading. Sometimes acts are read more than twice.
In this case, the act was scheduled for its first reading last August in St. Augustine, Florida, but some last-minute concerns that were voiced by health insurers and the Alliance of American Insurers and others made the Conference leadership change its mind and just have a reading for informational purposes only. So the earliest this act could be promulgated would be following the meeting in 2002, so we are not anywhere near having this act ready for promulgation by the Conference.
Having said that, I would beg your indulgence, if you go through the act very briefly with me. I promise not to be too lengthy about this. But let's go through it section by section very quickly. I think that would be beneficial. It would give you an idea of what the Conference is looking at, what the issues are, and where appropriate I will draw distinctions between the current act and the 1985 act.
One of the first items is in Section 1102 sub 2, where we have a definition of authenticate that is still subject to review. But the intent behind that is to allow electronic authorization of agreements under this act.
Health care in subsection 6, the definition of health care has specifically been modified to include dealing with genetic materials. That seems to be a very sensitive topic of health care, and we felt that that was something that definitely had to be addressed.
Health care itself is something that is done in the course of providing medical treatment to a patient. So for example if you had a patient fill out a questionnaire from an insurance agent representing the company, that would not be in the provision of health care.
Moving on to a perhaps more interesting section, Section 103, scope. This is a very important provision in the act, and I will try to outline the reasons for that. As it states, except as provided in, this act applies to a patient's health care information.
This as provided in, this is a -- the hope behind this is to lead the legislations of the several states to examine their statutes and see where these health care provisions are found. As Joy pointed out, these provisions are found in every nook and cranny in the state's statute book. When you are going through a 6,000 page state statute book and you don't know where you're going to run across some disclosure of medical information, it makes business very difficult, and of course it provides a lot of employment for attorneys, so it is not all bad.
But this would require -- if a state wanted to adopt this act and they didn't want all their other health care information provisions trumped by this act, it would behoove the legislation to direct its legislative staffers to do the search and find out where these provisions are, and hopefully examine them to see if they make any sense. If nothing else, this act could be a very beneficial improvement of the state law, of the states that make an attempt to enact it.
So assuming the states do find the provisions that they wish to keep, they will cull them out here in black and white, thus making the job for subsequent attorneys that are advising their clients as to what the health care information laws are in that state much easier. It is black letter. The businesses can get reasonably inexpensive legal advice as to what their obligations are under the state statute.
The following section is also very important, we believe. By the way, when I say we believe, I'm not speaking officially for the Conference. My views are reflecting my own views only. I am not representing the Conference in these statements.
This is the rulemaking statute section. The benefit of this we believe is that the act itself can be fairly general in dealing with the regulation of health care information. But where appropriate, an agency that is regulating an entity, for example, could be authorized by this provision to adopt regulations concerning two different items within the act.
One is the form and dissemination of the notice of information practices. This is the notice that the health care provider is required to give to the patient, telling what the health care information practices are. We'll get to that section eventually.
The other regulation would concern the nature and sufficiency of the safeguards provided in Section 7101. Those are the computer security and physical security provisions. Rather than trying to go into several pages of provisions trying to guess where technology is going to be going in the future and to put that into the statute itself and then hope it doesn't become obsolete too quickly, we felt it would be better to have the agencies that are in the state and are familiar with the different circumstances of the regulated entities to draft regulations that would reflect their situation.
For example, they might have different regulations concerning a solo practitioner than they would for a multi-state hospital chain.
You might be thinking to yourself that this does tend to override the uniformity concern, and state are going to have different regulations concerning these things. We don't think that we can get to an absolute Procrustean bed here, where everybody is cut to fit. We think a little bit of variety is going to be a complete necessity.
One thing I failed to note in the article on scope is that states are free to treat different medical conditions differently if they so desire. But this act itself makes no distinction between HIV/AIDS information and blood pressure. The only material that is treated differently is the directory information that is to be given out as to whether your condition is fair, poor, critical.
Moving on to disclosure, we do have exceptions regarding disclosure that is under a disclosure agreement or under a compulsory process from a court of law. But basically, the disclosure provision says that anybody that is getting health care information or an agent or an employee of the health care provider, independent contractor may not disclose.
Then going on into Subsection B, the person to whom health care information is disclosed in the regular course of business. This is a substantial expansion of what the prior act had covered. What we are saying is that if the health care provider provides it to somebody that is handling their business records, that entity would have the same requirements as the health care provider itself.
In Subsection C we get to a rather touchy part of this act. It is an area where federal law has a leg up on state law. What it tries to do is create a long-arm statute where you could get jurisdiction over someone outside of your state.
It makes the attempt in the following way. The recipient outside the state by accepting the health care information consents to the jurisdiction of the state for the purpose of any disclosure by the recipient of that information.
This is somewhat different from HIPAA regs that are proposed. Under HIPAA, they are trying to use the third party beneficiary approach, that you would rewrite all of your contracts to make the person that is providing the information liable in case their business partner violates the regulations. There has been a great deal of objection to that approach. This takes the approach of trying to make the person to whom the information has been disclosed liable in their own right and not the person that disclosed it in good faith.
Going on to Section 2101, the authorization for disclosure, pretty much nothing of too much interest here, except getting to Subsection C, the Conference feels very strongly about the sale and marketing of health care information. So in order for a patient authorization to be used for the sale and marketing, it has to be executed separately from the authorization for any other purpose. So you can't have a patient sign an authorization form with a proviso on there saying, by the way, this is also going to be used for sale and marketing. It has to be executed solely for the purpose of permitting sale or marketing and it has to have a conspicuous statement on the form itself saying this is what you are signing away. Be prepared to get your mailbox filled with solicitations from pharmacy companies.
Moving on, 2103 gives the patient the right to revoke authorization for disclosure. Joy mentioned that as well, that many states do not have that provision. However, if a person makes the disclosure with no notice that the authorization for disclosure had been revoked, the person making this disclosure would not be liable under this act.
2104 is disclosure without the patient's authorization. That is very sensitive for those who purport to represent the consumer's interest. Here we have disclosure without any authorization from the patient whatsoever. We feel this is very important to have this. Our motto in this is that too much confidentiality can kill you. We feel that if doctors can't get their hands on information that is relevant to the patient's health, then it is a bad situation. We need to have specific language in the statute saying that it is all right to disclose health care information without health care information in a certain variety of circumstances.
Sub A, it is to the health care provider or to the successor of the health care provider, under Sub A1. Under Sub 2, if you have imminent danger to the health or safety of the patient or other individual, you can disclose, three, to the patient's immediate family or other individual with whom the patient is known to have a close personal relationship, if it is made in accordance with good medical practice. This is something that caused a ruckus up in Maine. We think this would deal with that.
Four, this is a bit more broad. If disclosure in the form that does not identify the patient is impractical, does not achieve the purpose of the disclosure, and if there are reasonable safeguards, it can be disclosed under Sub 4 to any person that requires it for education, planning, quality assurance review, that sort of thing. Also for use for research in an institutional review board, and lastly to an appropriate official in a penal or other custodial institution in which the patient is confined.
Then under Sub B, the directory information may be disclosed unless the patient has instructed the provider not to give directory information. Obviously you need to disclose to public health authorities to the extent required by law or report health care information to law enforcement authorities to the extent required by law, and of course under a court order.
2105 is the disclosure order. That is a compulsory process, I won't go into that.
Going on to Article 3, we do give a very broad access for the patient to see their records, to copy their records. If they are refused, then there are procedures for contesting that refusal. Many times the health care provider will decide that it would not be in the patient's best interests to see these records. If that determination is made there are in Subsection 3102 provisions for dealing with that.
Under C, if the health care provider refuses a patient's request, the provider shall permit examination of the record by another health care provider selected by the patient who is licensed, certified or otherwise authorized to treat patients for the same condition as the provider that refused the request. So if it is something dealing with cancer, you wouldn't be giving those records over to an acupuncturist.
Moving on to four, this is something of great interest to patients, is the request for correction or amendment. They are given broad authority to request corrections or amendments. If that request is denied, they have the right to put a notice into the health care record saying that they made that request. But we were very careful to state in that section and the following section that if you do make a correction, it does not require or authorize the health care provider to delete, erase or obliterate health care information. Obviously, you need to have a good clear trail that if a health care provider is treating a patient based on their own best health care information to the detriment of the patient, you wouldn't want that information later deleted and the proper information put in its place. So that would certainly make the health care provider look as if to be liable for malpractice.
The last section in Article 4 is dissemination of the corrected or amended information, that the person caring for the records would distribute it to people who have already seen the erroneous information, but this would be done at a reasonable fee. All of these health care disclosure provisions do provide for recoupment of a reasonable fee.
Under Article 5, this is the notice of information practices. We do have a default provision here for what notice to give to the patient. This is one that, if the state chooses not to authorize regulatory agencies to adopt rules, specifically fine-tuning this to the circumstances of the health care provider, this provided a fault provision for notice to the patient.
This would typically be given at the beginning of the doctor-patient relationship. Then if you came to see your family practice doctor for the first time, you'd be given this notice. If subsequently your doctor sends your record over to the radiologist, there is no need for that radiologist to also provide notice.
Moving on to 6, 6101, health care representatives, the point of interest here is that if you authorize to consent to health care you may exercise that right with the proviso that if the patient is a minor and is authorized to consent to health care without parental consent, only the minor may exercise the rights of a patient under that act.
That was aimed at the widely used exception for minors to receive an abortion. This would not allow the parents to go through the medical records and determine whether or not their daughter had an abortion or some other similar exercise.
6102 deals with representatives of deceased patients. We do have to have a right for the personal representative handling the state to go in and have access to the medical records, if for nothing else then to determine whether or not the patient died as a result of something to do with their medical care. That is pretty much required.
7101 is the duty to adopt security safeguards. As I said, we kept this very broad and general, with the idea that the regulatory agencies could fine tune that.
7102 deals with the retention of records. One thing we provided for is that if a health care provider gets a request for a set of records, that health care provider is now prohibited from destroying those records for at least a year. Again we are dealing with probably a malpractice situation here.
Article 8 deals with remedies and criminal sanctions. This is an area where the act does differ from the proposed federal regulations. It argumentatively makes the Uniform Health Information Act more stringent than the federal regulations. Then the issue becomes, what part or parts of the act would survive a conflict with the federal regulations. I'm not going to pretend to answer that particular question, but it is a point of argument.
Our civil remedies under Sub 8102A. If you are aggrieved by this act you maintain an action as provided under this section. Under B, the court may order the provider to comply with the act. Under C, if there is a willful and intentional violation or reckless disregard of this act, the person is entitled to recover actual damages. Under D, if somebody brings an action under this section and they were not substantially justified, the court may award the prevailing party of reasonable attorney fees, and the prior law said it was only the patient who was the only one that could get reasonable attorney fees. This would allow that same recovery to be made by the person holding the records if it was not substantially justified.
Under criminal penalties, these are criminal sanctions where the standard for criminal liability is quite high. For example, a person under A maliciously or for personal gain willfully and with reckless indifference discloses, could be guilty of a misdemeanor. Then under B we take the obvious ones where you've got bribery, theft or misrepresentation of identity, and C, someone who willfully or knowingly presents authorization that they know is false, would also be guilty of a misdemeanor.
The rest is boilerplate, and I'll conclude.
DR. LUMPKIN: Thank you. A couple of quick questions. I have been in state government now for 15 years in Illinois, and I have never heard of a commissioner on uniform state laws. Does every state have one?
DR. MUNSON: Yes, they do. In fact, you have got a legislator, Tom McCracken, who was in the state legislature, who is a commissioner.
Many states have legislators that are appointed as commissioners. They must be attorneys. The Conference will not seat anyone who is not an attorney. In Wisconsin, as reviser of statutes, I am ex officio a member of the Conference. The deputy chief of the drafting bureau is a member, and the legislative council has a staffer that is a member. So we try to get -- many states do this; they try to get folks who are somewhat knowledgeable about legislative drafting to sit on this Conference. Then judges, law professors, partners in law firms, these are folks that will be appointed by the governor and seated by the Conference.
DR. LUMPKIN: Joy, I had a question for you. On the state health privacy laws, to what extent are they impacted by ERISA?
DR. PRITTS: That is a very complicated question, and it is almost impossible for me to answer in a general fashion, because it varies so much, depending on what the specific issue is that you are asking. ERISA deals with -- or is the limited area of the employer sponsored plan. But as we all know, that is where most people are insured these days.
DR. LUMPKIN: I take from your answer, there may be some impact on the state privacy law by ERISA?
DR. PRITTS: I think that there might be, yes.
DR. LUMPKIN: Questions from the committee?
DR. FRAWLEY: Bruce, I was curious. We know that HHS will be coming out with its final rule on privacy. I was wondering, do you have a plan to go back to the drafting table to incorporate any of the specific provisions of that privacy regulation? As I go through the language here, I would expect that there could be some disparities between your model and the HHS regulations.
DR. MUNSON: Yes, when the regulations are promulgated we will take a look at those. We have a meeting tentatively scheduled for February, and hopefully we will be able to make our first pass at accommodating the regulations in time for the August meeting of the Conference. If things look fortuitous or they look like the outlook would be good for states to act on this, then we would have the act for its first reading in August of 2001.
But yes, we will definitely go through the regulations and conform the act to it. There is also -- hopeful that we could get an agreement to create some sort of safe haven for states that adopt an act that has been approved by the federal government, maybe an unholy alliance between the federal government and the states. We're not sure of that yet, but it would be nice to get some certainty as to what is actually going to be the law.
DR. FRAWLEY: The second question I have is, our subcommittee did hear some testimony from the National Association of Insurance Commissioners, in terms of some of the work that they were doing in this area. I was curious as to whether there has been any interaction between your organization and NAIC on the whole issue of privacy of health information.
DR. MUNSON: We have attempted to open a dialogue. At our earlier drafting meetings we had invited the American Council of Life Insurers, the Health Insurance Association of America, the National Association of Independent Insurers, and the NAIC to attend the meetings.
Perhaps in light of the fact that so much attention was focused on the proposed federal regulations, we did not as big a response as we hoped for, which is actually not a small thing, because the Conference is made up of basically generalists such as myself. My background is not in health care information. We do rely extensively on not only our own research, but also on hearings where the drafting committee would meet, and in a situation like this, we would have interested parties who would make comments and suggestions as to the direction the act should take. We have had that. I am a member of another committee on the uniform computer information transactions act, and in our meetings we had well over 90 people, observers, attend these meetings. We had some difficulty finding rooms large enough to hold them all.
Does that answer your question?
DR. FRAWLEY: Yes, thank you.
DR. HARDING: I'd like to ask both of you if you have any idea about states' approaches to specially sensitive illnesses. You mentioned here genetics a little bit, but the ones that frequently come up in our testimony are ob-gyn issues, infectious disease issues, genetic issue and psychiatric conditions.
Are the states looking at that as a special diagnostic, specially sensitive kind of requirements for some of those things, or is everything being kind of in one lump sum?
DR. MUNSON: Joy will address what the several states are doing, and I'll just comment afterwards on what this act does.
DR. PRITTS: What the states have traditionally done in an area where they see -- I would say particularly where they see a public health issue, such as an STD, tuberculosis, HIV/AIDS, where there is some sort of a stigma attached to it. There are a few exception;s to this, but they have generally implemented a higher degree of privacy protection for those sensitive types of medical conditions.
They also have required reporting of those conditions. Often the reporting goes hand in hand with the higher protection. When I say that, I don't necessarily mean that it is only the reported information that is protected at the government level. Sometimes what the states also do is, they also protect that information to a higher degree in the hands of a provider or in the insurer.
DR. MUNSON: As I mentioned earlier, what this act does is treat all information that is not directory information the same. Under this act you wouldn't have the situation that somebody is getting medical records, and then they suddenly come across a place where the records have been embargoed, which of course sends a message in and of itself. But we do require the states actually to search out those provisions and re-examine them hopefully and see, do we really want to have this information treated separately.
I think sensitivity is in the eye of the person whose records they are. If you are in line to become the CEO of a major corporation, your cardiac diagnosis would be very sensitive, perhaps even more so than something that other people would think of as being more sensitive, say obstetrics and gynecological records.
DR. FYFFE: Are you NCOIL?
DR. MUNSON: NCCUSL, the National Conference of Commissioners on Uniform State Laws.
DR. FYFFE: Right, but you're not NCOIL?
DR. FYFFE: What is NCOIL?
PARTICIPANT: (Comments off mike.)
DR. FYFFE: Because they have also come up with a model, have they not? But they are different.
DR. MUNSON: Yes.
DR. FYFFE: Should we do an inventory of every organization out there that has a model on privacy? I'm not trying to be funny here, but I'm getting a little concerned that there is a whole lot going on, and we are the national committee that ought to be listening to all this. But you're not NCOIL.
DR. MUNSON: No.
DR. LUMPKIN: No, but many of them keep their own opinions quiet. Barbara.
DR. STARFIELD: As you listen to each other, do you think there is any hope for coming together with one model legislation instead of two or three?
DR. MUNSON: Well, the National Conference does believe that they tend to have a pretty good record in getting these things enacted. This was considered to be conspicuous exception to that rule, in that it is never a good idea to spend the resources of the Conference, as was done culminating in the '85 act, in putting the prestige of the Conference on the line and getting two enactments. We had a little bit of egg on our face with that.
We work hand in hand with the American Law Institute, and also we have ABA advisors. If we can come up after the initial reading and the final reading in 2002, and if ALI is on board and ABA is on board and give it a hearty endorsement, then yes, there is a chance that this could go someplace. But I make no guarantees.
DR. PRITTS: I think you have some states that very much pride themselves on being very consumer oriented, such as California and Hawaii, who no matter what model legislation would be in a health area, would try to make it better, because that is their model legislation, is to be out on the cutting edge.
I think you also have some states that this issue has never been on their radar screen. I just did a report saying what is out there. I think that if the standard were high enough, then maybe a uniform act would work very well. Our concern has consistently been that most of the models that we see, we don't consider the bar to be set high enough.
DR. MC DONALD: Questions and comments. First, I appreciate as a physician the idea that we can know about the patient's medical conditions and we can take care of them. I always thought that obscuring that information and blindfolding a surgeon and having him cut on you, gets the same kind of results. I haven't heard it stated the way you said it before.
But there is some value in general in life to understanding variance by having separate independent efforts made. It is interesting to see, this is largely a broad-based effort across a large number of contributors. Most states participate. I look at it as being quite different than the regulations. I guess I wonder whether there are opportunities for your model to influence regulations in any fashion as they evolve. Is there a natural counterbalance?
DR. MUNSON: You can ask John Fanning if it has had any impact on the federal reg.
MR. FANNING: Just as you say, it makes another additional to the literature to be used as a model.
DR. MC DONALD: You mentioned a couple of cases of states tripping over their laws. Could you give some detail? Are we likely to get into gridlock with the regulations when they come out, given your knowledge about the states' complications?
DR. PRITTS: It is hard for me to predict that, since I don't know what the final regulations will look like. But I would be surprised if there were not some practical problems with the federal regulations, just as there have been problems with most of the other comprehensive laws that have tried to address this issue, because it is one thing to talk about it and it is another thing to actually put into practice.
One of the things that happened in Maine is that -- it is hard to discuss what happened in Maine, because there is some belief that there was a concerted effort made by people to interpret the regulations as strictly as possible to stick it to the regulators, frankly. But if you read it as strictly as they were reading it, they were saying that they couldn't deliver flowers to peoples' rooms and things of this nature. It did give people an opportunity to revisit the statute and loosen it up.
A lot of people have different opinions as to how it was loosened up. It is much less consumer friendly than it was originally. There are some provisions in it which have nothing to do with access by doctors or other people who haven't a need for the information, but who would like the information for other purposes. So it was a very mixed bag, the end result of that.
I also would like to address a comment that you made earlier about how as a doctor you are concerned with a patient being able to put an embargo on certain aspects of their health information. We can certainly understand that.
One of the concerns that we have as medical records are being moved into an electronic format is the number of people who have access to those records, and in particular the way -- the proposed regulations say that treatment is not just for the individual patient, but for treatment of all patients. So you have sensitive medical information online, accessible not only to your doctor, but to every doctor, every nurse, every clinician in a health care facility, and they all can look at your information when they are treating their own patient.
That is a little bit of a different situation than what you are talking about, but that is what we are looking at happening in future years, and I think that is an area where people are very concerned.
DR. MC DONALD: One can argue a certain case where you should know this, and I think the psychiatric situation maybe would be one that I wouldn't -- except for the drug use, I wouldn't mind. But we run the risk of doing great damage in these great experiments, which these are.
Reading your legislation which is fairly clear, I still found myself thinking, this would be a lousy program because I can't really figure out what it can do if I made it a computer program. I can't be sure what are the constraints or what covers what. So these are hard things to draft, and it is hard to figure out all the consequences, just looking at the words.
But in terms of the case about many physicians looking at it, the challenge really is knowing who has -- if someone falls over in the hallway, there are some real practical problems in the hospital setting, defining who is an eligible care provider and giving urgent needs for consults, the mechanisms that are possible to register the fact that I am someone assigned to this other person. So there are some real practical problems in constraining it. Better I think is just to review them and then punish people who mis-look at them.
There are ways to deal with that process to keep people from just having fun browsing.
DR. PRITTS: The problem is when you have doctors who are able to look at any patient's record, including other doctors' patients for treatment of their own, how can you ever tell?
DR. MC DONALD: I wasn't fighting for that --
DR. PRITTS: Well, and not even looking at that regulation, but just looking at how we have seen how some of these electronic systems work within hospitals, and it is very difficult to identify, because the computers can be left on for 30 minutes or something of that nature, under one person's ID name who has actually seen that information. There are security concerns.
DR. MUNSON: With the act, in Article 7 we do hope that the person safeguarding the records will include policy standards and procedures for the management of the information, including administrative safeguards. We would expect that that would certainly limit the number of people and the reasons that they would be looking at this information. It should be basically a need to know. It wouldn't be just browsing through. You would say, Brad Pitt just came into the hospital, I've got to look at his records, and have somebody who is not dealing with the patient just doing it for voyeuristic purposes.
But as was said earlier, this being something that is controlled by humans, it is not going to be perfect.
DR. SCANLON: Let me make the situation even more complicated. Looking forward in the future, just looking at the crystal ball, what do you think the chances are of a federal statute? The regulation is limited to what the statutory basis was, and a lot of the problems with the earlier draft of the HHS reg were based on --
DR. PRITTS: You mean a federal statute that pre-empts all state laws, or just a federal statute?
DR. SCANLON: That would depend on what the statute would say, but we don't have one now. We have proposals for federal regulations. And obviously they are limited by what they have authority for. But looking ahead, obviously it is not a clear picture. Do you see the country and the leadership coming together on what could be a federal statute in this area, or do you think that the issues will be so divisive that they will just let us in HHS issue our reg and then see what happens and take it from there?
DR. MUNSON: My crystal ball is a little bit cloudy, but just looking at past efforts, looking backwards to what the efforts have been and what the success rate has been, it wouldn't give you cause for optimism.
DR. PRITTS: Would you like my wish list, or what I really think? We would of course love to see a federal law. It would be nice if we could get a federal law that could even -- Hawaii was unable to resolve how to deal with the law enforcement issue, what access law enforcement personnel should have. So they did not address it.
You could possibly move towards that approach on the federal level, you would hope. There are some very hot button issues that maybe just won't be able to be addressed, because you will never be able to reach resolution. But that doesn't mean that you should give up the entire effort to have federal legislation.
I also think that nobody will be surprised if there are legal challenges to the regulations when they come out. Depending on how those lawsuits turn out, there may be some impetus at that point for Congress to step in and actually do more.
DR. MUNSON: Can I just add one thought here? The National Conference does believe that there is a great benefit in having state laws governing many activities that are not properly the subject of federal law. The practice of medicine has historically been -- and properly, in our opinion -- been the subject of state laws governing the licensing and the practicing of medicine. We would think that there would be a loss if suddenly the whole field was pre-empted and you had to get a federal license to practice, or just take it from there, the whole field being federalized.
DR. STARFIELD: I realize you had to be brief in the discussion of the model legislation, but is there any special provision or discussion of data for medical record information for research and public health purposes?
DR. PRITTS: No, it does not deal with that information. I think the reason it does not deal with that is because it deals with primarily financial information from insurers. So it is usually claims data and data that the individual gives to the individual. It is not all health data.
DR. LUMPKIN: I think it is important to clarify that the NAIC regulations applies to data held by insurers as part of this overall conglomeration of insurers and banks.
DR. PRITTS: No, the NAIC model actually applies to a broader range of insurers than just those affiliated with banks.
DR. LUMPKIN: But it is within the context of the broader federal law that they are creating these rules. Did I miss that?
DR. PRITTS: Well, that was their impetus. That is the primary goal behind them. But they have also stated that they intend for these rules to be broader than that and to be as a stopgap protective measure until the HIPAA privacy rules come into play, because they are concerned that these financial institutions will be able to share this information under these new financial arrangements now, and there are very few protections in place.
DR. LUMPKIN: But their boundaries don't really take over until the information has been transmitted from the creator and the provider to --
DR. PRITTS: To an insurer, yes. The information has to be in the hands of an insurer, exactly. That is all the insurance commissioners can govern.
DR. MUNSON: I realize we are out of time, but I would just like to urge the people in this room, if you represent an organization or if you know people who would be interested in the Health Care Information Act, there is a website and a phone number under the national headquarters in Chicago that is part of this act in the preface.
We do have a meeting tentatively scheduled in February. We really would like to have input from all interested parties. Thank you.
DR. LUMPKIN: Thank you very much. This has been a very interesting session. We will now recess for lunch. We will reconvene at 1 o'clock and hear from Nicole Lurie at that time.
(The meeting recessed for lunch at 12:05 p.m., to reconvene at 1:00 p.m.)
A F T E R N O O N S E S S I O N (1:05 p.m.)
DR. LUMPKIN: There are three resolutions from WHO that we talked about yesterday, and to what extent we may want to as a committee respond to those resolutions. Because the response needs to be in by the first of January, we may not be able to respond as a committee. But my thought is to ask each member to send in individual responses to Marjorie, since she is not here, or to Jim, since he is, Jim or Marjorie, and then we would send them all on to the Department with a cover letter saying that we haven't taken an official position, but that we would hear some of the comments from individual members on those.
One of them is in regards to ICIDH, and the other is --
DR. SCANLON: Summary measures of population health. There was a resolution relating to that as well. And a third related to common instruments for the measurement of health status. We can recirculate that.
DR. LUMPKIN: I don't think that Paul and Eugene got a copy, and Clem. So we will recirculate those. We will give everybody two weeks to send in their comments, and then we will send them on to the Department.
DR. SCANLON: In HHS we will have to prepare positions at any rate for the U.S. to take at the WHO executive board meeting in January at any rate, so any ideas you all have would be very helpful as well, in terms of those resolutions.
If you have ideas about the World Health report, health systems performance, you may want to send those in as well. I remember, Barbara gave a critique at the September meeting related to that overall report.
DR. LUMPKIN: I'll start off with a report on the NHII workshop. We held a joint hearing with the 21st century vision for health statistics work group in North Carolina. It will probably be the last time that I will be able to go to North Carolina, because I was there twice in the last six weeks. The first time they had a record cold, and of course last Monday when we went there it was snowing. So I probably won't be invited back.
But I will give a short brief summary of that and where we are going with the NHII and a brief summary of the health vision for the 21st century after we have our guest speaker. Dr. Lurie.
DR. LURIE: Sorry to be late, but hearing about snow is just music to my ears, as a Minnesotan. I was actually late today because I had to scour around and find long pants for my kids, who were not allowed to go out to gym wearing their shorts and T-shirts and sandals.
Thanks for the opportunity to have a chance to share some thoughts with you here. I am reminded that it had to be the first month I was here, I came in and talked with this group. I am actually gratified about how much has changed since then, and the kinds of progress that we are making, although I will say we still have just a huge way to go and a lot of water to cross.
I am reminded at that time, when we were still in the formative stages of Healthy People and still thinking through what the disparities initiative would look like. Both of those now I think are well launched.
I wanted to just take an opportunity to talk to you today about both of those initiatives, to talk with you a little bit about some of the progress we have made and about what I see are the data needs and data issues, and hopefully have a productive conversation about how we can work together on that.
Since staff were really wonderful about providing overheads, I will use the overhead projector.
Hello, folks on the Internet. I am Nicole Lurie, Principal Deputy Assistant Secretary for Health here in the Department. What I wanted to do is share with you today some of the issues relating to Healthy People 2010 and to our eliminating disparities initiative and talk about some of the data issues that are involved.
Just to set the context and make sure that we are all starting out at the same point, to remind you that Healthy People 2010 was formally launched in January, although as you all know it is the result of a decades-long process and series of iterations around health goals for the nation and health improvement for the nation.
A couple of things that I wanted to highlight for you here are that Healthy People has two overarching goals, one of which is a goal related to increasing the years of healthy life, and the other is a goal that relates to the elimination of disparities. I think all of you are familiar with the fact that in Healthy People 2010 we talked about reducing some disparities, but never really set a national goal of eliminating them. Although this has sparked a lot of debate, setting this national goal has really resonated very well with communities around the country who have felt that the goal of eliminating disparities is both appropriate and long overdue.
When we talk about eliminating health disparities, I want to highlight that we talk about disparities in a whole variety of areas. I do recall that our first discussion here had to do with why are we focused on a narrow set of issues, and Barbara's very impassioned plea about addressing SES disparities in particular.
So where we had ended up in Healthy People was looking at a whole variety of disparities, clearly those related to racial and ethnicity are familiar to you. Those related to socioeconomic position are also critical, and with our data sets we can measure it by either education or income, rarely both, and we have other markers of socioeconomic position at this point, but there are some.
We also focused specifically on disparities that are associated with geographic location, particularly urban versus rural residents.
As we have gotten into a lot of discussion about Healthy People, there are some other important disparities that have come on the agenda and become part of the eliminating health disparities goal. One of the major ones was sexual orientation. As we got into Healthy People, one of the things that we started to learn is that there is an awful lot of data to suggest that in many areas, there are important disparities that are associated with sexual orientation. Unfortunately, we have hardly any way to measure this in our data systems. So this has become an additional health disparities goal.
Finally, there are goals that relate both to disability status and gender, and these again are with some focused objectives, because they are either not necessarily relevant or not necessarily attainable for a whole host of reasons across all of the different objectives.
But anyway, that is where we are with the groups for which we seek to eliminate disparities.
You also know that Healthy People is a rather massive document. Part of what I like most about the presentation of Healthy People and its launch, other than the terrific snowstorm that we had, was presenting the book to Secretary Shalala and have her stand on it, and she was instantly three inches taller, just to remind us that it has 467 objectives in 20 some-odd chapters. But in an effort to focus on some really important issues and focus the energy and attention of the nation, with help from the Institute of Medicine and from many other people, we selected 10 leading health indicators which we hope to use over time much like we use the leading economic indicators, to help focus the nation and provide regular input for the nation on what is the health of the nation, what is the state of the nation's health. I think the leading health indicators are also important for you.
The reason I am going through this is because these disparities areas and the leading health indicators have pretty significant implications for you as NCVHS and for us thinking about what the data needs are to support them. Remember, in Healthy People we want always to start with some baseline data. It is our goal to have hopefully two data points throughout the decade, at least, with which we can track our progress.
It turns out that for many of these areas, we have no baseline data. If we have baseline data, we certainly don't have it for all of the disparities groups that we talk about or are concerned about. When we talk about smaller subgroups, whether it be some of the different racial and ethnic subgroups or sexual orientation subgroups or disability subgroups, the cell sizes get thin very fast, and so small that you can't do meaningful analysis. If in fact you think that people use data much more locally than they do nationally, and what really is important to people in communities is getting their own data, the cell sizes get even smaller. You can get to a state level for many of the things that we are concerned about. So it makes it very difficult for states and local communities to use the kind of data if they can't see that it is directly relevant for them.
In tangent with Healthy People has been the other HHS initiative to eliminate racial and ethnic disparities in health. I think you are also familiar with this. This is an initiative that was announced in February of '98 that again made eliminating disparities a goal by 2010.
At the time it started, there was a decision made to focus first on six clinical areas. The choice of these six clinical areas was driven by two major factors. One was that these six clinical areas accounted for the bulk of morbidity and mortality in minority communities, and secondly, we had some baseline data. We knew where we were starting, we knew that we had some data in some of our data systems to be able to track our progress over time, and this became really critical, because there are a number of areas we could have chosen where we had no data at all.
Thirdly, we know that interventions exist in all of these clinical areas that would improve health status and help to eliminate disparities.
Since that initiative has been launched, I am pleased to say that all HHS agencies are very significantly involved in it, and we can talk a little bit about that. But again, focusing for a moment on these six clinical focus areas really creates another level of data need and data tracking need, as we start talking about subpopulations.
Obviously, in the Department there are multiple approaches that we need to take toward eliminating disparities. I have listed just some of them on this slide, and I want to highlight two of them. One of them is clearly expanding access to care. This will continue to be a life work and challenge for all of us for some years yet to come, unfortunately.
One of the major things that we have worked hard on doing is thinking about the part of the disparities that is owned by the health care system. We will grant you that a lot of the underlying causes of disparities are not things that the health care acute delivery system is well positioned to impact on.
But for the part that is owned by the health care system, the issue of leveraging the existing health care system is critically important. So we have really tried to position the disparities issue in part as a quality of care issue across the health care system. Commensurate with our decision to do that has been increasing evidence -- I think you can't pick up a journal now without finding an article that talks about differences in quality of care, differences in access and differences in utilization or treatment patterns that are associated with racial and ethnicity. We understand now that quality of care is often very different and very uneven for different racial and ethnic groups.
So making it a quality of care issue and then leveraging the existing health care system is critically important. We have been working closely with HCFA, particularly within the Medicare program. I think many of you know that now there the PROs in all 50 states are required to undertake projects that are aimed at eliminating disparities in some of their key clinical areas, which are very much in line with these. In a number of other areas, HCFA is very focused on wanting to look at quality of care and now wanting to measure quality of care, not only across the board, but by different racial and ethnic subgroups to try to understand whether people are getting different care. Obviously, Marian Gorning's work confronts us every day with the fact that there are huge disparities that exist within the Medicare program.
In addition, a part of the health care system that is not necessarily part of the Department, but which about a quarter of minority populations get their care, is the VA. The VA has also embarked on a cross-VA effort to look at disparities in care and quality of care across the VA, in parallel to this effort.
But our efforts in this area are needed to go beyond -- they are needed to continue beyond the federally funded health care system really and get us to start working with the private sector as well. So we have been working with insurance plans, managed care plans, other kinds of payors and purchasers around the country to get them as well on board with this, and to help raise the consciousness about the fact that disparities exist in the health care system across the board, and that each one of these systems owns a part of the problem and a part of the solution.
Again, this message I think is resonating very, very well, and particularly when you are able to give people back their own data about their own system. Yes, it resonates even better. It has been a very interesting time talking to health plans in particular.
One of the things that I have been doing is talking about a piece of research that Kevin Schulman and colleagues did a year and a half ago that I think you are all familiar with, that tried to look at the issue of why it was that African-Americans got fewer cardiac procedures. He did a study with videotaping patients and showing videotapes to doctors at medical meetings, and showing that doctors would make different choices about different patients.
You show the pictures to people and you say to people, if this happened not in a medical meeting, but in your health plan, with your doctors, what would you think? You know what the most common response has been until very recently? Our doctors aren't like that. It is really interesting. Our doctors aren't like that, this could never happen in our health plan. Then when you start to ask the question about, how do you know and how could you find out, and don't you think you want to know, and if you are a purchaser, don't you think you ought to know if all of your employees are getting the same kind of care, people wake up and get very engaged in this.
The issue here is, most health plans don't collect any data on racial and ethnicity and have very little if any data on socioeconomic position, so it is hard for them to do this work.
Many have been laboring under the misconception that it is illegal for them to collect this information. Some now are understanding that it is not illegal, and are moving forward, and I am happy to talk about that if we get to some questions. But I wanted to talk in some detail here about leveraging the health care system, because it ultimately is a big data issue, and one which I hope that all of you can struggle with.
You are also I think familiar with the fact that the CDC through its REACH program has funded a number of community demonstrations around the country, trying to develop and look at best practices for eliminating disparities in these clinical areas, and these payor community based organizations with data partners, to attempt to do this.
Additional research that looks at underlying causes for disparities and why they exist is another major approach to eliminating disparities. For those of you who haven't seen it, NIH now has up on its website for public comment for a couple more weeks, I believe, its trans-NIH strategic plans for the research agenda to eliminate disparities, and has put together a trans-NIH plan and a budget initiative to go out over the next five years or so to try to do this. For those of you who haven't seen it and want to comment, I think from a data perspective, your look at this and comments would be quite helpful.
We have also engaged the Office of Civil Rights here who have been a very active partner in thinking about civil rights enforcement. They have been very active and had a lot of successes now around the country at least getting the kinds of conversations started about why these disparities exist and what we ought to do about them, but they too come back to the fact that it is really hard to take a civil rights approach to this and do civil rights enforcement without data, and again come back with an incredible plea for having health systems of every kind collect data so we understand what is going on, and so we can track progress.
Finally, because the health care system only owns a small part of the whole disparities problem, we have been looking at a number of intersectoral approaches. We recently formed this partnership with the American Public Health Association to kick off a broad intersectoral approach and a national plan aimed at eliminating disparities. In addition I have been chairing a group of representatives across most of the other Cabinet level Departments to look at and think through what contributions the Department of Education, Labor, et cetera, make to the issues related to disparities and their elimination. That group has just recently gotten going, but there is a lot of energy there, and very fertile ground for moving forward on those intersectoral approaches as well.
So having said all this, it ought to be fairly clear why it is that we need racial and ethnic data. I probably don't even need to go through this, but clearly the issue of monitoring data I have talked about. The issue of monitoring our progresses in this whole initiative, either through Healthy People or monitoring trends over time in the national and state and local levels, because people need to see their own data to evaluate programs and their success, and I put quality improvement here, to understand more about some of the underlying determinants of these disparities, and finally to be able to monitor and enforce the civil rights acts and civil rights laws.
So why is this an issue for you? I have alluded already to some of the issues related to data gaps. We have identified many data gaps related to Healthy People overall, somewhere between a half and two-thirds of those measures will get measured once as things stand now.
We need to develop a long term strategy to fill data gaps. That is being actively developed and worked on by the Data Council. I want to appreciate particularly the leadership of Jim Scanlon in this, as we move forward.
Clearly, there is a budget shortfall for funding our data systems. This is an issue that is a chronic problem, and something that we need to address. We also need to implement new federal racial and ethnic standards by February of 2003, which gives us another date to look forward to, but something that we need to plan for now.
In addition, there is increasing interest by communities around the country in monitoring disparities in access and quality, and finally, the minority health and health disparities research and education act that was just passed calls on the National Academy of Sciences to do a study about the racial and ethnic data necessary to move us toward our goal of eliminating disparities and to look at the data systems that are in place in the Department and talk about how they might be used or enhanced in this regard.
I will comment that maybe two months ago now, we had a meeting of the Secretary's Council for Healthy People, which consists of all the former Assistant Secretaries for Health and all agency representatives. They come and provide input for us on our plans for implementing Healthy People 2010. It is a very -- the former Assistant Secretaries for Health as you know are a very bipartisan group, and I would say about half to three-quarters of the way through the meeting they stopped and said, one of the challenges that really underpins this all is data and the inadequacy of data. This isn't a partisan issue, this is a scientific and public health issue. We as former Assistant Secretaries for Health all want to go on record as saying we will work with you together to see what we can do to move forward with some of the funding and impetus and push for data.
So I think as a resource of in this case wise men -- there have been yet no women Assistant Secretaries for Health, we ought to take advantage of that opportunity.
Let me just take a couple more minutes and review for you the recommendations from the Data Council with regard to priority investments in our data systems for 2001. As you know, the budget is in never-never land right now, and so none of us quite know what is going to happen with that. But the recommendations were to make some strategically focused enhancements in several areas.
The first had to do with fully funding our current commitments and maintaining our capacity to collect racial and ethnic data, both with the HIS and other NCS data.
Here, what the Data Council did is say, let's focus on the 10 leading health indicators and the indicators for those six clinical areas that were part of the disparities initiative. Let's not bite off the whole thing, but let's take a small set and look at what we would need to do to collect data over the decade for this small set of indicators, which turn out to be about 35 different measures or so.
So the first priority was these current commitments. Then in addition, some funding enhancements that would directly improve the monitoring systems for both of these in terms of vital statistics, in terms of the health interview survey, in terms of defined population, HANES, and in terms of behavioral risk factor survey.
Then the third tier of this was looking at additional enhancements to improve HIS capacity for racial and ethnic data more generally, and these occurred in MEFS, in HCUP, in HIV data coordinating centers and in NHS epidemiology centers.
So those are the Data Council's recommendations about where our strategic priority investments need to be. I think they are a set of very sound recommendations that will take us quite far.
One of the things to keep in mind as we think about this is, in doing this we don't just enhance our capacity around these 35 specific measures, but by making this kind of investment get to somewhere around 100 of the other objectives for Healthy People 2010, not only at a national level, but because of the kinds of population sampling that are required for us to get to just basic racial and ethnic category data, also enable us to get good state estimates for most of these measures, which are absolutely critical for states to move forward.
Let me just say that at the same time we have been doing this, we have also been examining the managed care plans that have come back to us and said we are concerned about the legality of collecting data. HCFA doesn't necessarily collect all the data that is needed, although it may exist somewhere in the Medicaid program and not brought forward into any central place with a quality that anybody feels good about. So there are a number of real and perceived legality concerns about collecting data. There are also pretty significant data quality concerns moving forward here that we have been trying to address as a Department. Let me just give you an example of a couple of things that we have been working on.
First, last year HCFA sent a letter regarding Medicare plus choice plans, and essentially reversed its former position in this and said it is not illegal to collect these data and we encourage you to do so. So for Medicare plus choice plans, they have got a green light to go ahead and do this. In terms of the other plans that HCFA has for Medicare plus choice, which relate very closely to cultural competency objectives, the need to collect these data are pretty substantial.
The Office of Civil Rights is working on a more national guidance about the legality of collecting these data, but in the meantime have provided specific letters -- I won't say of permission, but that will enable and provide a legal foundation for health plans that want to collect data and move forward.
I think the first health plan that had expressed a lot of interest in this was Aetna, who basically felt that there is a very strong business case for them to move forward to collect racial and ethnic data on their entire population, because they see all of their future market share coming from these populations, and they want to be able to serve them optimally and be able to monitor quality.
The Office of Minority Health has been working with the national health law project to review state law and regulations governing the collection of racial and ethnic data by plans and insurers. The Commonwealth has collaborated with us in a project to review federal laws for Medicaid and SCHIP. In addition we have recently funded the Public Health Foundation to look at the quality of data within state Medicaid plans and to work within states to do collaborative projects. Finally, HCFA has funded a project to analyze MCH data for state Medicaid agencies to see if we can make some progress there. So those are at least a smattering of things that are ongoing that I think will help on the data side of this.
In addition, the Office of Civil Rights recently released some language access guidance for the health care community more broadly to talk about what our expectations ought to be around providing language access, and data collection measurement and reporting need to be part of that.
So you can see that data really is going to have to be the underpinning for the success of all of these initiatives.
At that point, I'll just stop and take questions and see if we can have some conversation about where we ought to go from here. Thanks.
DR. LUMPKIN: Elizabeth?
MS. WARD: This is not a data question. May I ask it?
DR. LURIE: Surely.
MS. WARD: It is really a provider question. I come from the Puget Sound of Washington State, significantly impacted by immigrant and refugee populations. There seems to be a lot of confusion among providers, provider institution and health plans about who is required and how do they pay for interpretation, and how in a managed care environment in a 15-minute visit is the provider supposed to deal with the medical interpretation and insure that that information is being transmitted, and how can groups of providers and plans -- what is the environment that could get a problem solving atmosphere occurring around that, rather than the bickering that seems to be going on, it's your problem, no, it is your problem, how do we deal with that question?
DR. LURIE: It is a great question. I think the question about what is the environment around problem solving is very well put, because I think that is exactly what it is going to take.
HCFA is looking at some of the issues about whether there are ways to pay for some of these services, although where they are going to get with that, quite honestly I don't know. But I think that everybody recognizes more and more that it is a critically important issue, that there needs to be a reimbursement mechanism for it, and that it is important both for care and patient safety, which as you know is very much on everyone's mind. So that is potentially a hook into this.
I have been really excited looking around the country that there are some environments where best practices are beginning to emerge, or at least promising practices are beginning to emerge, either in consortia or providers in a community that work on translating documents, creating language banks. The model of Gouvernour Hospital in New York with using the infrared technology, if you are familiar with this. They have developed a technology used in a provider's office that does simultaneous translation, like at the United Nations, so both the doctor and the patient put on a head set and hook into a language bank, and in real time are able to talk to each other and hear in each other's language without a third person in the room. This is in the process of being evaluated.
It appears as though amortized over not a terribly long time period the investment and the cost in doing this are not great. I believe Commonwealth Fund and others are funding the evaluation of this as we speak. But there is a tremendous amount of excitement from providers and patients and community groups about what these kinds of things offer as well.
As we have worked with the Office of Civil Rights, it has been about an enforcement issue, it has been about how do we open the conversation about what is required and what the barriers are. I am also impressed in that mode with the number of communities that are working on pulling resources and creating language banks, for example, or other kinds of models that help get that kind of work done.
There is a long way to go. I think people are feeling their way. I think people need to see models that are well evaluated as they move forward. I was fascinated to learn now that Kaiser California has their computer system set up so that if a patient calls an office anywhere in the Kaiser system to make an appointment, the very first field that appears on the screen for the telephone contact with that person is language. So they are able to capture at the very beginning of the first encounter what the language preference is for that person, and then make accommodations within their system to go forward.
So there are some interesting things that people are doing. I think the challenge is to learn from each other rather than everybody having to re-invent the wheel for themselves.
DR. PERONE: I am Lois Perone, the Deputy Assistant Secretary for Planning and Evaluation. One of the things that I think our friend from Puget Sound -- I resonated to that and that part of the world -- we have to point your way to Seattle and to the regional office, the Office of Civil Rights. Our office here in Washington has worked very carefully with the regional offices to bring them on board with current practice and best practices and help point the way for you. So you are not feeling like you are out there in the far Northwest far away from here and not able to access good information, and people who are interested in a service orientation, not so much on the enforcement side, but in the service side at this point, in providing information that can help you meet the needs of your patients.
DR. IEZZONI: Nicki, I'm glad we have you here. You speak so eloquently about these issues, and you gave a great presentation.
One thing I am reminded of is, in our Medicaid managed care report to the Secretary, we observed that the Medicaid managed care contracts often do not include information about collecting data on race. We learned out in the field that many plans don't, and it was one of our biggest concerns in this report. So if that helps bolster some of your arguments to the Data Council, that you have an NCHS recommendation that you collect Medicaid managed care data by race and ethnicity, that might he helpful.
I have two questions. First of all, when you mean that you have to meet federal standards for racial and ethnicity collection, is that the new multi-checkbox that was implemented for the year 2000 census? My first question is, if one of your foci is tracking disparities over time, obviously if you capture racial and ethnicity data differently over time, tracking disparities over time is going to be confounded in some way by that. So that is my first question.
My second question, Elizabeth anticipated that. You will have to rely extensively on survey information to collect some of the data that you need, and especially to get information relevant to localities, you are going to have to do it in a diversity of languages. You are also going to have to be sensitive to cultural differences and how people interpret the meanings of questions.
We have heard the cognitive interviewing that has been done to support the NHIS has been fairly limited. So there are sometimes paradoxical answers that you find when you are analyzing the data, and the only way you can explain that is that people interpreted the question differently.
So my second question for you was, for these survey sources, will NCHS be able to find the money to do the linguistic work that needs to be done to get instruments that are applicable to specific linguistic minorities and secondly, can you do the kind of cognitive interviewing to understand cultural differences in how people might interpret the questions.
DR. LURIE: Great questions. Let me see if I can start to address them, and then maybe ask Ed to pitch in here, and maybe somebody else will give you an example.
First with regard to your comment about Medicaid managed care, it is completely on target, and we are delighted to have the additional support. There are now some Medicaid managed care plans that are starting to get to work in this area. It is not yet a requirement.
But I am pleased that now the SCHIP final regulation was published, you probably noted that race was a required data element to be reported. So progress sometimes comes in small steps, but I think that is a foot in the door. I think in that regard we need to go further.
With regard to the census categories issue, it is going to be a thorny issue, but there are a lot of very smart people at work looking at the crosswalking and the bridging and doing a lot of statistical analysis to figure out how we can get at something that looks like a comparable baseline and way to look at data moving forward.
On some days it seems like it is not going to be anywhere near as big a problem as many of us had feared, and on other days that may not be the case. You probably saw the November issue of the Journal of Public Health, which had a lot of information and a number of articles that addressed this issue. But I think it is something that people are really sensitive to moving forward.
Just as difficult an issue there, quite honestly, is the issue of the fact that we need ultimately to understand more about culture, not less, and to understand that within each one of these mega-categories, there are many categories that not all Hispanics or Asians or blacks are the same, or that come from the same kinds of cultures and ethnicities. Ultimately we need to understand more about all of those different groups. That is going to get more operationalized at a state and community level for right now than anything else.
Your second question had to do with collecting interview data in a number of languages and doing some of the cognitive testing that is required. Ed, I don't know if you want to speak to that.
DR. SONDIK: All of this is obviously a challenge. I should have had this on my slide yesterday as challenges.
Let me just say a word about the first point. I think the best guess at this point is, if we look across the country, the change in the reporting requirements probably won't be a huge issue at least immediately.
But I think it is very important for this committee to track the responses, because really, it is anybody's guess. It could go in any number of ways, depending on how political this becomes. This is very much people reporting from their gut as to what it is they think what category or categories they belong in. I just don't think we know what is going to happen as there is more and more focus on it.
We do know from HIS as many of you know who have been collecting this for the better part of two decades, that it was a relatively small percentage of the population, about 1.4 percent reported multiple races. But that was then, and we don't know exactly what it is going to be in the future. Clearly, it is not 1.4 percent uniformly across the U.S.
So the results of the California health interview survey, the so-called CHIS, are going to be very interesting, and we will get a better idea as to what this all means.
The CHIS experience also is going to be very useful in helping us to understand the logistics and the cost of adequate translation services, because they are doing an excellent job in providing support. They are of course fielding a phone survey, but perhaps we can borrow the infrared technology and use that.
I think this is clearly a challenge for us. Part of the dollars that we are talking about in this initiative would go toward that. But it has been a problem without a doubt in the past. As the country becomes more diverse, we will simply have to devote resources in that area.
I think our primary goal needs to be quality of what we get. If we spread that quality so thin, then the data will be uniformly worthless. So we may have some tough choices to make, but we don't have to look at every group every year, clearly. But I think we ought to have a goal to look at every group at least once in this decade, if not twice, which will require resources and require a Congressional commitment to it. But I think we need a couple of data points on almost every group that we can think of.
DR. LURIE: I'll just comment that the issue about different interpretations of different questions is an issue even for people who respond in English. We have been looking at CAPS data, for example, from federal employees, and looking at plan to plan differences in response to CAPS data from different employees. It is really very interesting.
In aggregate, what you see apparently is that African-Americans are the most satisfied and Asians are the least satisfied with their health plans. It also turns out that about a third of Asians, despite the fact that they are on health plans, have no use and no regular source of care, which is really interesting, and high rates for both African-Americans and Hispanics.
When you disaggregate that and look at it by plan, what you see in each of these ethnic groups are plans that appear to be doing something right where there is no disparity, and plans where disparities are huge. I think it is going to be important for us to start to understand what is going on in these, both in terms of what is it that people are responding to, and what are the cultural expectations they bring to the system, and then what accounts for these differences.
DR. COHN: Nicole, thank you very much. First of all, I'm with Kaiser Permanente for 22 years in Northern California, and I want to thank you very much for the unsolicited compliment.
I am probably going to ask a very naive question, and I apologize. First of all, I think what you are doing is wonderful, and I congratulate you and the Department on the activities. This committee has spent a lot of time talking about the issue of collection of racial and ethnic data. It convinces me for example that geocoding may be pretty good for SES data, but we continue to be confronted with, how do we get racial and ethnic data. It has gone everywhere from, every time you put an encounter in you need to somehow have that on the electronic encounter submission to membership, to census, to -- you mentioned SCHIP applications, and we go on and on and on.
I guess I'm confused. Are we getting the basic data about racial and ethnicity? It seems that we are getting the 12 to 14 different types in census and other places, and maybe I am mistaken about that. It seems like it is being asked in many places. Are we getting it anywhere very good, or is it just that we can't connect all of this?
DR. LURIE: A good question. The Census gets it, the Social Security Administration gets it. If people fill out an application rather than have an enrollment worker fill out an application for Medicaid, usually they get it. They fill out a SCHIP application, they get it. If you go to school you get it.
But those sources are not necessarily collectible, and some of them like the Census are not linkable to health care information. Many of these sources aren't linkable. Clearly within a health plan for example, you ought not to have to ask it at every encounter. There ought to be, and there is often a way to ask it once and have that information linkable.
We also have to realize that all of this discussion is going on in the context of the privacy regulations, and what information can be transmitted and ultimately linked and shared. There are not only federal regulations and guidelines about this, but different states have different regulations, policies and guidelines about this.
But by and large within the health care system itself, the answer is no, we are not collecting the data in most places.
Let me say one other thing. The VA interestingly has just finished collecting functional status data and a lot of other data on its entire population of users. Within that context, they did collect self reported data on racial and ethnicity and a number of other characteristics in all of their users.
DR. SONDIK: Just to follow up with Nicki, this is a complicated problem. Beyond the fact that HHS has a policy of requiring the collection of these standard racial and ethnicity categories in all of our sponsored data collections and virtually all of our major surveys and research studies do collect this information. That doesn't mean you can tabulate it, it doesn't mean you have enough cases in the cell to make any estimates for most of the groups probably beyond white, black and Hispanic.
So one of the issue is, it is not so much that the information isn't included in the questionnaires; it is that it is difficult to get enough numbers to tabulate that, number one. The administrative sources of data, it is really quite a complicated picture, as Nicole was saying. We in HHS have to rely on the providers and the plans and the human services agencies throughout the country, their own recordkeeping, to report to us. Some of them do collect this, some of them don't, some of them collect it in a standardized way, some of them don't. The whole Medicare system until about seven years ago used a very simple white, black and other kind of approach to all of us.
So it is just a complicated problem. There are other groups that you won't get data unless you do special studies in certain localities. So you need a whole new apparatus and capability, like the differing population in HANES almost, to get these.
So I think as Nicole was indicating, this really requires a multi-pronged strategy, and in many ways it is really difficult to get there. The fact that you collect the information on a questionnaire doesn't mean you have enough cases to tabulate everything and analyze. Even the Census runs out of cases.
DR. LURIE: None of that is linked to administrative data in the health care system. So it depends on what you want to use it for and how, and there are multiple uses for all these different kinds of data systems.
DR. SONDIK: The other thing to follow up on, the bridging question and the trend question, Lisa. The committee might want to weigh in on this as well. The LMB, which established the standard to begin with, revised the standard for racial and ethnicity to begin with, is putting together some guidance for how you might tabulate and interpret and address this problem of bridging from the old system to the new and how do you do trend data.
They don't have an easy answer either, but they do provide some guidance in terms of the things you have to consider when you are doing this. They are going to issue this for public comment. I don't think they have issued it yet, but you may want to have the population subcommittee take a look at it and see where it could be strengthened.
DR. MAYS: Thank you for being here. Jim's whole explanation about the issue of the difference between collecting the data and using the data will help in terms of my second question. I have two questions.
The first one is, I want to understand a little bit better this issue of the enhancements. The Data Council came up with a set of priorities. What I want to understand is, are we talking about permanent enhancements or are we talking about like just the next data collection period? HCHS I don't think has a permanent license, but some of these things, I am assuming that this is something that is going to continue, because if that is the case, we have some data sets in which you really do need to keep collecting the data over time, in order to be able to merge the data to have large enough numbers to actually do the type of analysis where we can get down to the quote subpopulations.
My second question has to do with, I well understand the direction of the Data Council's recommendations. One of the things that it doesn't deal with -- and I'm not sure whether it has been discussed -- is the notion of having data sets that are large enough that you can do some analyses. I.e., meaning, has thought been given to beginning to develop almost all ethnic data sets, either NIH fielding a cohort -- because if any one of us comes in with a cohort study, NIH is about ready to die these days, because it is so big and they are so costly and nobody wants to commit to them.
But either it is the developing of it, or it is something like some guidance where you have -- and I'm not advocating for CHIS, but CHIS like studies, when what you do is, you sit down and have some core to them, and that they are funded by a variety of sources. That way, we can do sub-subpopulations.
DR. LURIE: In response to your first question, what we are really talking about in some sense is building this into the base and creating a system, so that this isn't a one-time deal, but this is something that continues to be monitored over time.
DR. MAYS: So it is permanent money for the budget?
DR. LURIE: That would be the goal, if we can get there, increasing the annual budget for this. We have come to appreciate in government, once you start something, it is really hard to turn it off. So there may be a time when we want to turn it off or change it, and then we will be confronted with a different kind of challenge. But for right now we are talking about making this a recurrent proposition.
With regard to the other, there is a huge amount of discussion in the Data Council and a number of other places about the sample size getting large enough, or looking deliberately and doing analysis. Ed is probably in a better position to answer that question.
I am going to need to run, so if there is something else that I need to answer rather than Ed, I'd be happy to. Okay, good.
DR. LUMPKIN: We thank you very much for coming.
DR. LURIE: Thanks, everybody, and thanks for all of your hard work and deliberation here.
DR. LUMPKIN: Thank you.
DR. LURIE: It is very appreciated.
(Recording interrupted.)
DR. SONDIK: -- is developing a long term strategy. To be frank, this has been discussed for a number of years, and I don't think we got very far. But over the last year, we really seem to be getting far with this.
I think in part, it is this synergistic aspect of this initiative, coupled with needs that we all know we have, with the difficulty of doing long range planning. Well, the Data Council has committed itself to do that planning; there is a group that is doing it. Jim, I don't know if there has been a discussion from --
DR. SCANLON: A little bit.
DR. SONDIK: Was that part of -- well, I would think down the line, a longer term discussion of that would be useful. But there is a commitment to identifying what these needs are, and to filling them.
The dollars that we are talking about in this are to expand the base, but the level of them would mean that they probably would not be used for exactly the same thing each year, but be used in this more flexible way that I was getting at, that would enable us to pick up at least points on different populations rather than tracking them continuously over time. That really needs to be worked out.
What we are trying to do is again get the best quality that we can for the greatest number of populations. We would all buy that. But we are really concerned about doing something that is just skin deep; we don't want to do that. So when we do target particular populations, we want it to be with a sample size that would really be significant.
To do that requires even more resources than you saw on those slides, but the ones we are talking about will be a significant step to enhance what it is we have already got.
DR. MAYS: I guess what I was advocating for was that it is something that is over time and to figure out -- just like you do a family of studies, where you are able to do some linkages. I think that there may be some ways to do that. I can't see in this model how -- if you look at all those other diversities that were there, gender, disability, et cetera, that you can actually answer the questions in a comprehensive way versus answering the questions in a very piecemeal way.
DR. SONDIK: We could have a longer discussion, but there are some strategies that we can use, including the support of studies that are not necessarily federal studies, but use standards that are defined at the federal level and applied across the board. This way, Nicole talked about leveraging the health care system; we can also leverage the national or the federal health data collection resources in that way.
But there is a certain tyranny in the numbers. If we want to collect an adequate sample of a certain precision on a particular population, it costs the same basically, regardless of how large that population is. That is just the issue. It means in a sense multiplying some of these surveys multiple times over to get these kinds of resources.
I think we have to be very careful in looking at that list of target populations and how those categories work together to identify those that need the tracking if you will the most, at least on an a priori guess basis.
The Data Council is committed to this kind of thinking in its strategy, and thinking about multiple level of resources that are needed for different types of strategies. So I think we are actually making a considerable amount of progress. Pretty much over the last decade, there was a good deal of talk about this, and I think not much action. But I think the talk in fact did convince the Department, the different components of the Department, that we do need to invest in this.
At one point, Nicole mentioned that the NIH strategic plan for addressing disparities is up on the Web for comment. That is a very significant advance, to have something like that. We are going to be seeing more of that, I'm sure, across the Department.
DR. LUMPKIN: We are going to have more discussion on this, but not today, and not in this venue, because we need to move on.
Earlier I was giving a report from the NHII work group. This work group had a hearing in North Carolina, in sunny and snowy North Carolina, a joint work group with the 21st century vision. We will have a joint work group meeting with the 21st century in two weeks, and after that the groups will be in a better position to see where we are moving with our reports that we hope to complete sometime within the next calendar year.
Any questions on NHII or 21st century?
On the Executive Committee, we have already taken care of the action item. The meeting that we had at the beginning of this meeting, I think the most pertinent thing to report on that has come up in the subcommittees, is trying to get a better handle on the issue of eliminating disparities as a central theme for us to evaluate as an approach over the next 12 months. At the same time, the population subcommittee will be looking at some priorities of aligning the activities that we do within dealing with issues related to health, with the activities of the full committee. So there will be more to follow on that particular issue.
We have done standards and security, we have done the work group on patient medical record information. The committee on privacy and confidentiality?
DR. FRAWLEY: The subcommittee met this morning. There were a few charges that the subcommittee had from the Executive Committee. The first thing we did do is discuss the continuing need for the subcommittee, based on some of the discussion that occurred at our August retreat and some discussion at our September meeting. It was the unanimous agreement of the subcommittee members that there was a need to continue to move forward with the subcommittee.
What we decided to do is, we thought it was very important that we revise our charge. Our charge was drafted in the fall of 1996, much of it related to the subcommittee's initial work plan as outlined from the provisions of the HIPAA legislation and providing recommendations to the Secretary on confidentiality and privacy.
So we thought it was important that the charge be revisited. The plan is that Richard Harding, who is the interim chair and Gail Horlick, who is staff to the subcommittee, will work on a draft that will be distributed to the subcommittee members for their review and comment, with the expectation -- and possibly a conference call, with the expectation that at the February meeting there could be a revised charge brought forward to the full committee.
In terms of the work plan for 2001, there were two items that we discussed that obviously will go on to that work plan. The first is the privacy regulations. The objective there would be to examine the impact of the regulations on the health care industry. The format that would be proposed would be hearings.
The earliest that it is anticipated that that could occur would be probably June. That was based on our feeling that if we were looking at an early 2001 release of the regulations, and giving the industry enough time to review those regulations, that nothing could be done earlier than say the June meeting. So that is one issue.
I also did bring forward the recommendation from the Executive Committee about eliminating disparities and the population's health. The subcommittee will look for guidance in the Subcommittee on Population to give us some guidance there on the issue of disparities. So I think there will have to be some communication to Dan Friedman as acting chair of that subcommittee to coordinate with Richard on that, so that the subcommittee on privacy and confidentiality can decide how to get their arms around that issue.
Then we still have nine topics sitting on our current work plan, which obviously the subcommittee will go back and look at and prioritize and make some assessments on what is doable, and make some prioritizations.
The second part of our meeting was a presentation by Cynthia Pelegrini, who is the legislative director to Congresswoman Louise Slaughter from New York State. Congresswoman Slaughter has spent the last five years working on the issue of genetic discrimination and has introduced legislation on this issue.
So Cindy did talk about the Congresswoman's efforts, some of the issues concerning the provision in the HIPAA legislation regarding genetic discrimination, some of the concerns with protecting all patient health information. So we had a good roundtable discussion, primarily because of the impact of the Human Genome Project, and the fact that we will be facing some serious issues in terms of genetic mapping and issues about privacy.
So that was the second part of our meeting this morning. And of course we were happy that the panel that we had recommended to the full committee on the state privacy laws in terms of Joy Pritts and Bruce Munson turned out well, so that I think was a good decision to take that agenda item off the subcommittee and bring it to the full committee, in terms of that.
So we have the transition plan, so I am happy to report that Gail and Richard and I will be having conference call to tie up some business. So we actually have a transition plan, so there will not be any drop in activities. We still have a continuing membership that continues to be enthusiastic in terms of the activities of the subcommittee.
I personally would just like to take the opportunity to thank everyone for all of their hard work. It has been a pleasure to be involved with the group. Also, since Bob is not here, to recognize the accomplishments of Bob Gellman in initially starting the subcommittee and bringing forward a lot of the work that went forward on to the Secretary.
DR. LUMPKIN: Thank you. Any questions on the report? Thank you. The subcommittee on populations.
DR. IEZZONI: I would also like to thank my subcommittee members, many of whom are no loner here, which may be one of the explanations why I may no longer be. But anyway, to thank everybody for their hard work and wish everybody a happy life. Hopefully I will see some of you again. I know that I will certainly see a number of you.
I am a lame duck. I have one item that I can talk about. John, I don't know what you talked about earlier today, about the transition. We do not have a transition plan involving me, in terms of leadership of that subcommittee. The only thing that I can speak to is the ICIDH report, which you may have gleaned from Marjorie's presentation yesterday is a report tracking this moving target that has complicated our task.
We had thought that we were talking about ICIDH as a classification system when we started doing this initiative a year ago, and then all of a sudden it changed in the last two months fairly dramatically. But we hope to have as an action item for you all in February a draft of the report for you to comment on.
What we need to do in that report is to make the case that functional status measurement is important, which I would like to underscore; I think it is, and to urge especially the standards subcommittee, as you are thinking about code sets to remember ICIDH. A parting plea.
Any questions?
DR. LUMPKIN: Any questions or additions? Kepa?
DR. ZUBELDIA: On that last note, have you brought this up to the standards groups like X-12 and so on?
DR. IEZZONI: We haven't done any of that, but that is one of our recommendations that will be in this report. The standards group needs to do that.
Kepa, I don't know a standards group from schmander, with the X-12 stuff. This is one of the problems with me having been on this committee for six years, is that I haven't memorized those acronyms. But this is one of the recommendations that we will have. John Lumpkin, I know from his comments yesterday at the subcommittee, will be reviewing our report with that in mind. One of the audiences needs to be those guys, whoever they are.
DR. FRAWLEY: I just want to make a comment, Lisa, because I know this has come up in the past when reports have been issued, in terms of privacy being an afterthought. I just want you in your report to be sure to reflect that we considered the ICIDH at our meeting last June, and that the subcommittee raised no concerns regarding any of the criteria in that classification.
So since I won't be here and you possibly may not be here when that report comes forward, I don't want people to raise the privacy issue and say, did anyone ever address this.
DR. IEZZONI: We discussed that explicitly at our subcommittee meeting yesterday, and that will be reflected in the report.
DR. LUMPKIN: And in the interim, Lisa will be finishing out the ICIDH project -- well, I won't say that. She will be finishing out the first iteration of the report that will go to the committee.
DR. IEZZONI: Oh, really? That is all I have to do?
DR. LUMPKIN: To the full committee, in June. In the interim, I have imposed upon Dan Friedman to be the interim chair. This is probably as appropriate a time as any -- we are having a number of interim chairs. We are actually going through quite a transition period for the committee, not only with the individuals who are leaving after this meeting, but we have a number of members who are up next June, many of whom cannot be renewed, so we expect another transition.
So the goal is, as we are working on new members, we are not going to ask you at your first meeting, but we will be looking for you to be playing not only a role as members of the committee, but also leadership of the various subcommittees. So that is just a word of warning.
Any other questions on the subcommittee on populations?
DR. MC DONALD: Just a question, that the ICIDH report will get -- because that was an earlier mention. Was that today?
DR. LUMPKIN: No, that will come to the full committee in February.
DR. MC DONALD: I thought something was passed around earlier today, or --
DR. IEZZONI: That was Marjorie's report on the Madrid WHO meeting where ICIDH was considered.
DR. MC DONALD: But can I get my hands on that soon?
DR. LUMPKIN: Which report?
DR. MC DONALD: I thought you said three people didn't get it. I was one of them.
DR. LUMPKIN: Oh, yes, the resolutions, yes, you will get those.
DR. MC DONALD: One other question. I am woefully ignorant of ICIDH, although not of acronyms. Is that a functional status survey instrument, or is that just a coding system?
DR. IEZZONI: This is a coding system, and that is a very important distinction to make. This is not an assessment or a measurement tool. This is a classification system similar to the way that the ICD is a classification system of diseases.
DR. MC DONALD: But you made the point that the standards groups should support and implement a functional status survey question, no?
DR. IEZZONI: No, I don't believe that I said that. I said that in considering code sets, this is one to consider.
DR. LUMPKIN: It is going to be a little bit more complex than that, because obviously the issue that we had discussion about yesterday and in the standards committee, of the difference between the data that is available and the ability to code, the classification system will not necessarily be very functional if the data is not even collected.
So there are pieces of this process that will be ongoing efforts by this committee even after we take the first approach.
DR. IEZZONI: I'm glad that you mentioned that, because that reminds me that for the patient medical record, the computerized medical record, this also needs to be considered.
Let me just say that the physical therapy and occupational therapy and speech therapy and other allied health professions probably will not have any trouble coding this based on their information. It is physicians who don't code functional status information in their records.
DR. LUMPKIN: It is really all those pieces together, which is where the patient medical record information and transmission thereof -- one of the issues came up because Kathy was not here and won't be here to report on the quality committee, is talking about some of the infrastructure that may be needed in order for this kind of thing that would -- we have spent some time talking about patient medical record information and standardized transmission, but we haven't spent much time on the intelligence that would be able to add knowledge to the systems.
So as we proceed on in both the standards as well as the quality committee, some of these pieces will need to be reviewed, and functional status may be a good case study on how we can move these systems to move forward appropriate assessment, which ought to be happening but is not happening because the tools haven't been standardized and so forth.
DR. ZUBELDIA: Lisa, would you update all of this with the final name and the final acronym?
DR. IEZZONI: It has changed. Even two weeks ago it was a different name than what Marjorie gave us yesterday. So I don't want to do right now. Why don't we wait until December 15 and see what they call it then?
DR. STARFIELD: There is a footnote that says despite what they call it, they are going to keep the acronym.
DR. IEZZONI: Right, the acronym will probably stay the same; it is just that the words might be different. But Kepa, stay tuned on that one. Hopefully by December 15 we will have a final name.
DR. ZUBELDIA: Just send me a note with the final name or acronym, whatever that happens to be, and I'll take it on to the next meeting.
DR. LUMPKIN: Barbara, is there anything else to add on the work group on quality?
DR. STARFIELD: We might just say how we're going to frame it. We went over the work plan for the work group on quality, and decided that the first two items were not specifically in the work group on quality but is part of other things the subcommittee has done. So that left two or three other work group items. We thought we would combine them and focus the rest of our activity on quality in the context of disparities, because there are so many efforts going on both federally and privately about other aspects of quality. None of them are focusing on disparities, so we thought that would be our unique contribution, to help those groups focus on quality.
DR. IEZZONI: I think ARHQ is doing something on disparities.
DR. STARFIELD: Yes, maybe, but I think we are thinking more in terms of the population than in terms of the clinical.
DR. LUMPKIN: And the work group will be looking to try to schedule a hearing on the front end of the next meeting.
Did I skip any of the work groups or the subcommittees?
PARTICIPANT: The vision of the 21st century?
DR. LUMPKIN: I combined that with the NHII report. Jim?
DR. SCANLON: Not relating to one of the committees. Perhaps on the front end of one of the next meetings, the February full committee meeting, I think we would probably like to have an orientation for the new members, orientation and indoctrination and so on, and for any of the current members who need to be reindoctrinated or reoriented. I think we will try to do it somehow in connection with the next meeting, maybe the day before.
DR. MC DONALD: Both to thank and to clarify, I am just discovering people dropping off as we heard the various people speaking, and just highlight who is leaving and to thank them for the work they have done.
DR. LUMPKIN: That would be like the job of the Chair. I've got that down in my agenda. Before we get to that point, the next item on the agenda is future agendas. There are some items which we do have scheduled for the next meeting. I thought I would go over those very briefly.
The issues that we think may be in some position to take action on would be the ICIDH report. We think there may be something coming out on digital signatures which may result in us responding to an NPRM.
DR. COHN: No, we may be coming forward with a letter.
DR. LUMPKIN: Or a letter, depending upon --
DR. COHN: There is no NPRM.
DR. LUMPKIN: Not by HHS. My understanding is, that is moving over to Labor, one of those other agencies. But if they come out with one, we may want to respond to that, or Commerce or one of those.
The third item is that we should be -- we will need to take some action and set up a process to approve the annual HIPAA report to Congress, and also to approve the 50-year history, which will be sent out to members sometime within the next two to three weeks after the final review by the Executive Committee.
Reports. We will have quality of coding and racial and ethnicity and states arraignments data. We are looking to have a panel on that, and a presentation on the NEDSS, the national electronic disease surveillance system, and the public health data conceptual model will be a presentation. Also, depending on how we can fit it in, a presentation on ICD-10 CM, and also sentinel indicators for the national health information survey.
So that is items that we are putting on the agenda. We may get to that point and say we can't do it all, as we often do, but those are potential items.
DR. MC DONALD: Clarification. Is ICD-10 CM the same as what was ICD-10 PS?
DR. COHN: No, ICD-10 CM is the diagnosis coding system, and ICD-10 PCS is the procedure. It used to be Volume 3 of ICD-9.
DR. LUMPKIN: If there are other items that people think need to be on the agenda, pleas feel free to e-mail me. For those of you who are new on the committee, I may be sometimes hard to reach by phone. I am always reachable by e-mail.
At this point, before Lisa gets out the door, and I fully understand, this has not exactly been one of your better trips to Washington, anyway, there are four members who will be going off, and I thought at this point to recognize their contribution, which has already been recognized by the Department with certificates and all that other neat stuff which we don't do as a committee, but certainly Lisa, who is getting ready to go, and who will be not leaving until just before the next meeting. She has agreed to stay on long enough to work through the ICIDH report. Certainly it has been a thrill for all of us to have the opportunity to work with Lisa. I will be able to work with her on the quality forum and some other committees. I certainly hope that you won't be a stranger to our activities. We expect to get those e-mails and letters complaining about the work that we do, or giving us insight that we ought to have. So it has really been a thrill.
Kathleen is also leaving. She has played a very crucial role in transitioning the privacy committee. As she mentioned, Bob who is also leaving played a key role and did a lot of personal time and effort in developing that first letter that we sent, that really formed the basis of a lot of what the Department has done on privacy and the privacy regulation. Kathleen has played a role not only there, but also on the Executive Committee and many other ways. She always reminds us what it is like in the trenches in medical records, and that has been a very important addition, because docs never have enough respect for medical records until they really want something and medical records finds it, and we are always thrilled.
Elizabeth is the fourth member who is leaving and has played a very important role in public health practice, not feeling like we are here by ourselves, and a very important contribution relocated to how much of this will be implemented. She has -- during the course of this committee and her activities here, she has moved from the state health department to the university and the private sector. I thought there was a university transition for a few months.
MS. WARD: That was a brief dot.com experience.
DR. LUMPKIN: But again, as with Lisa and Kathleen, we hope that you will not be complete strangers. We would appreciate your input, as you have gained a lot of experience and have really been very important to us.
MS. WARD: Just let me take these moments to say thank you. It has been a great experience, and I am taking peoples' e-mails with me. Kepa and Simon particularly should be warned that I want to keep track of what all on the data and security side is going on. And unfortunately because of the geography I can't drop in like I know Kathleen will be, but I will find a way to stay in touch.
DR. LUMPKIN: Thank you. With that, I think we have completed the business on our agenda. Welcome to Gene and Vicki and Paul. As you will find out, we will get you involved even before the next meeting. But I will be in touch. We hope everyone has a wonderful set of holidays coming up, and Happy New Year, and invigorate it with all the family stuff and all the other stuff that we do around the holidays. Bye-bye.
(Whereupon, the meeting was adjourned at 2:25 p.m.)