[This Transcript is Unedited]
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington , DC 20001
Agenda Item: Call to Order - Dr. Cohn
DR. COHN: Why don't we get started here, if everybody would please be seated. We will apologize to everyone, we're running about ten minutes late, obviously we had workgroups meeting from 8:00 to 9:00 this morning and they went right up to 9:00.
I want to call this meeting to order, this is the second day of meetings of the National Committee on Vital and Health Statistics. The national committee is the main public advisory committee to the U.S. Department of Health and Human Services on national health information policy.
I am Simon Cohn. I'm the associate executive director for health information policy for Kaiser Permanente and chair of the committee. I want to welcome committee members, HHS staff and others here in person, also welcome those listening in on the internet.
Let's have introductions around the table and then around the room, for those on the national committee I would ask if you have any conflicts of interest related to any of the issues coming before us today would you so publicly indicate during your introduction. I want to begin by observing that I have no conflicts of interest. Jim?
MR. J. SCANLON: Good morning, everyone, I'm Jim Scanlon, I'm with the HHS Office of Planning and Evaluation and I'm the executive staff director for the full committee.
DR. STEINWACHS: Don Steinwachs, Johns Hopkins Bloomberg School of Public Health, member of the committee, no conflicts.
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the full committee.
DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and Quality, liaison to the full committee and staff to the Subcommittee on Standards and Security.
DR. CARR: Justine Carr, Beth Israel Deaconess Medical Center, member of the committee, no conflicts.
DR. W. SCANLON: Bill Scanlon, Health Policy R&D, member of the committee, no conflicts.
DR. STEUERLE: I'm Eugene Steuerle from the Urban Institute, member of the committee, no conflicts.
MR. BLAIR: Jeff Blair, Lovelace Clinic Foundation, member of the committee and I'm not aware of any conflicts.
MS. FARQUHAR: Mary Beth Farquhar from AHRQ.
MR. LOCALIO: I'm Russell Localio, University of Pennsylvania School of Medicine, a member of the committee and no conflicts.
DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of the committee, no conflicts.
MR. ROTHSTEIN: Mark Rothstein, University of Louisville, School of Medicine, member of the committee, no conflicts.
MR. HOUSTON: John Houston, I'm with the University of Pittsburgh Medical Center. I haven no conflicts.
DR. VIGILANTE: Kevin Vigilante, Booz-Allen Hamilton, member of the full committee and no conflicts.
MR. REYNOLDS: Harry Reynolds, Blue Cross and Blue Shield of North Carolina, member of the committee, no conflicts.
DR. WARREN: Judy Warren, University of Kansas, School of Nursing, member of the committee and no conflicts.
MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, no conflicts, member of the committee.
MS. GREENBERG: Marjorie Greenberg, National Center for Health Statistics, CDC, and executive secretary to the committee.
(Introductions around the room.)
DR. COHN: Well good morning everyone. Before we move into the agenda, I want to just take a moment and thank Marjorie Greenberg, our executive secretary, for I think a wonderful evening --
[Applause.]
DR. COHN: Certainly your hospitality and graciousness were very much appreciated and I can see that Kevin and John are still sort of recovering from the evening it looks like.
MS. GREENBERG: Well I must say my husband and I enjoy entertaining particularly when people are good eaters, which you were, it was a lot of fun and we appreciated the weather holding up.
DR. COHN: Please obviously extend our thanks to your husband the chef also.
Well anyway this morning we begin with an update on the AHRQ Quality Indicator Project by Mary Beth Farquhar and obviously thank you for joining us. After the presentation we will continue our conversation around process improvements recommended by the full committee retreat and sort of finish up that piece, and then move into sort of discussion of work of the subcommittees and workgroups and next steps. And obviously we will talk some about I think the planned next steps for the NHIN report and what we'll be doing over that over the next couple of months. As you know at 10:45 we will likely break and 11:00 we will start a joint session with the Board of Scientific Counselors of NCHS which will go until about 1:45 at which point we will adjourn our meeting.
So anyway with that, Mary Beth we're obviously very pleased to have you joining us, it was a pleasure meeting with you for the last hour in the Quality Workgroup and we're very curious about obviously your perspectives on the Quality Indicator Project which I know many of the members are involved with. So please.
Agenda Item: AHRQ Quality Indicator Project - Update - Ms. Farquhar
MS. FARQUHAR: Thank you. We at AHRQ are very pleased to be here today and look forward to collaborations with you on this project, I can't tell you how much this committee already has helped us out quite a bit with regard to the quality indicators but for those of you who don't know anything about them I'm just going to give a really quick overview today on how they're used.
DR. FITZMAURICE: Mary Beth, I wonder, do we have a copy of your slides?
MS. FARQUHAR: Yes, I can leave them with whoever, absolutely.
Uses of the quality indicators, some of the current activities that the committee and the workgroup has helped us out with already and then probably if you have a couple of questions I can entertain those.
The quality indicators are basically performance measures that were developed based on administrative data, they were developed back in the mid-1990s, they started out with the prevention quality indicators which are area level indicators that can follow trends and follow national trends, regional, and can go down to the county level, and they look basically at avoidable hospitalizations, that is indirectly looking at care in the ambulatory setting, if you have good care in the ambulatory setting that means you won't have a hospital admission so those are what those prevention quality indicators are, or PQIs.
The inpatient quality indicators are a set of indicators that are used in the hospital, they look at mortality, utilization and volume indicators and they're over a variety of conditions.
The patient safety indicators are the most recent, almost the most recent, they look at complications that occur when a patient has contact with the medical system, unexpected death, infections, things to that effect or what happens.
Now recently what we did is ended up putting indicators from all of the three into the pediatric quality indicators so that population is also covered, we just teased all those out that were in all of the other modules and put them into the pediatric section and we are currently working on some other things with the pediatrics. So all these indicators cover a variety of priority populations, the elderly, kids, neonates, women, and of course adults.
Now really quickly the structure of the quality indicators, the definitions are based on ICD-9 codes and procedure codes, they have a variety of things that they pull from there. The numerator is the number of flagged cases over the denominator which is the population at risk, when we say observe rate the numerator is divided by the denominator and that's what you get a number with and there's some ranges given in our documentation based upon the database that we used to develop the indicators which is the HCUP, the Hospital Utilization Project.
And then the volume is just basically the volume, counting.
Advantages for the use of the quality indicators include development of the documentation, the documentation software and technical support is all free of charge to anybody who uses to use these. We get a lot of input from all of our users almost on a weekly basis about this code you might want to look at, this code is a little different, we've come across this, and we do revise the indicators yearly with regard to ICD-9 updates as well as software updates and then also adding new indicators and different codes.
Like I said there's 86 indicators, again priority populations that we looked at, they focus on acute care, those kinds of things. Also we do, what's becoming a really big issue with regard to the indicators and performance measurement field is indicator maintenance. What my impetus for coming to you today or working with this group today is basically we are submitting the quality indicators to the National Quality Forum consensus development process for approval and what we ended up doing was doing a lot of work on the indicators to try to make them, provide the information to the NQF and make them as strong as they could be for administrative data.
So what has come up a lot in the NQF is that a lot of the indicators that are developed by researches are not maintained and hence they get approved and then they're not maintained so a lot of our work has gone into maintenance and upgrading the indicators. We also have a lot of benchmarks that are available on the website and also within the National Healthcare Quality and Disparities Report.
Limitations of the quality indicators are basically administrative data limitations, dependent on coding, there's other issues that come into play, they were developed for quality improvement and were developed within that context but lately they have been used for a lot of other things and we've been trying to work with the folks in the states and other places to make sure that what they're using them for is appropriate, risk adjustment limitations, and also the timing, you only get data in so many chunks and a lot of times it's retrospective rather then prospective.
Right now the quality indicators are used for a variety of purposes, they use them for hospital quality improvement, both internal and external within systems. We also use them for the National Healthcare Quality and Disparities Reports. We have nine states currently using them for comparative public reporting of hospitals. They're used for pay for performance most notably the CMS premier demo, they are going to use a lot more of them from what I understand. And then hospital profiling through places like Blue Cross and Blue Shield health plans.
There's a picture of the states, the most recent addition was Vermont.
Again like I had said we wanted to put the quality indicators through the National Quality Forum consensus development process and a lot of the activities that are going on currently have to do with getting the indicators into that process and providing the information that the NQF is requesting.
What we're trying to do is we have a national effort among hospitals that's going on at one level with the Hospital Quality Alliance and the Ambulatory Quality Alliance, known as the AQA Alliance now. They are reporting on certain measures and then we have the states who decided to use the quality indicators, which as you see the efforts at this point are not really aligned so we're trying to work with on the national and the state level to bring everything into alignment so that the burden on the reportees there's not too much.
So right now we, with the help of some of the folks in this room, we have commissioned, not commissioned but asked for volunteers to do some various workgroups. We worked on composite measures, we did three composite measure workgroups, one was the PQIs which is not being submitted to the NQF. We have two other ones that are currently in the process, we have one for the inpatient quality indicators that will boil down to two composites, one for mortality for procedures and one for mortality for conditions I believe, and then patient safety indicators will have an overall rate for patient safety is the way it's looking at this point, there are two draft reports out now for public comment and we'll be asking for other comments and vetting of those composite measures.
We've also convened a risk adjustment workgroup which some of the folks in this room were on, I do have the report if anybody is curious at looking at them and I would be willing to share them if you would provide me with some input. I opened the first page and saw a bunch of strange numbers and I decided to close it right away. It's well beyond my comprehension but they did a very nice job and Dr. Cohn was part of that group.
We also do literature reviews almost every year for each of the sets of modules to find out what's the most current literature, what's the most current evidence out there, and what affect it has on the indicators, whether an indicator should be, would be strengthened or revised or whether we should just decrease it down to another level. What we did here with regard to the indicators too is tiering, we are going to put out a tiering document that offers guidance as to which indicators are the strongest, which is tier one, and then down to tier four which is which indicators are the weakest or need some work or have the most gaps in evidence. And we'll make that available to people.
What we ended up doing for the NQF submission is submitting 32 of the indicators, a subset of the PSIs, the patient safety indicators, the inpatient safety indicators, the pediatric indicators and the composite indicators we'll be submitting, we're also going to be submitting a reporting template which I'll talk about a little bit later but those were also tiered and we submitted tiers one and two so it will give some people some evidence with regard to these are where the gaps are, these are the strongest ones that we've got for administrative data.
We also put out a call for interest in partnering for validation studies of the quality indicators, particularly the patient safety indicators. There is a large amount of interest in the patient safety indicators, if the downloads of the software and the documentation is any reflection every month we get about 2600 downloads for patient safety alone followed closely by the IQIs which is about 2000 per month. So people are interested, people are looking at them, people are using them and we're getting a lot of questions on the help line as well.
As I said the reporting template is coming from the QIs, this is basically tested on consumer groups and also with providers and risk managers and hospitals, focus groups and the like, and basically what we had come up with is a template that you can choose the indicators you want to use and then have them translated into lay language, consumer language, whatnot.
We do have some of the QIs already endorsed, we have the diabetes measures endorsed that are the quality indicators, we also have a failure to rescue endorsed which is a patient safety indicator. Failure to rescue, nurse not recognizing a complication, so they are used in the JCAHO nurse sensitive measures as well. Needs another name, that's for sure.
The composite measures like I said, we have, we're going to break them down into two, one for procedures and one for mortality for conditions, and then the patient safety, we have an overall patient safety score.
Risk adjustment, I can give you an overall quick view of what was looked at, we investigated several alternative statistical models and methods for considerations, models that account for trends in response variable over time and statistical approaches that adjust for the potential positive correlation on patient outcomes from the same provider. And if Dr. Cohn can explain that that'd be great --
DR. STEINWACHS: Same provider you mean same physician, would that be --
MS. FARQUHAR: Provider hospital, we don't, the QIs don't go down to the physical level yet anyway.
The QI reporting template, key features are form of dissemination, it could be used on the web or it could be a paper report. The indicators that are included, you can select the indicators you want to use. Framing the materials, it goes into telling the sponsors of these reports how to use the indicators and what they should be putting on their website aka framing the materials would be for consumer why you want to look at hospital quality improvement and why it's important, what are the indicators, things to that nature. It's organized by topic, things like obstetric care, pediatric care, cardiac care, those kinds of things so you can look and target the topic that's of most interest to you. You can also select a comparison chart that's made for you, you can choose as many hospitals as you want and it makes it easy to understand and to read.
They also provide individual indicator graphs which also show you not only the hospitals you compared but what the state average is and what the national average is so you know where those hospitals fall. And then in the back is the credibility piece where you look at the technical details if you're interested in those and you provide resources for the folks, so that's kind of the key features of the template.
We've also done a lot of work with the quality indicator and getting the whole program evaluated, we contracted with the group RAND and they have been working on this project for a little bit over a year now. The objectives were really to look at the market, the overall market of the quality indicators and performance measures and the measurement tools, see what was out there, see who the competitors were, see who the major players were, what was available, what wasn't available, where the gaps were, those kinds of things. We also talked to the users of the QIs, how they used them, why they used, why they selected them, those kinds of issues, and assess the market demand for the future.
The draft report is completed and I have a copy, a marked up copy of it I should say if people are interested in looking at that. They're supposed to have a final report due November 1st, 2006, and I believe RAND did give a brief overview of the findings to the Quality Workgroup which some of their suggestions did help.
What we didn't get from this was strategic direction, a lot of the folks that used them thought they were great, they liked them, they liked the scientific evidence behind them, they liked that AHRQ maintained them, but they had no clue about where we wanted to go next. So those were some of the issues that came up and that's where I think some help here would be appreciated.
We're also working on validation studies, we're doing three types of reviews. We asked for volunteers, we got, we were worried that we wouldn't get anybody to volunteer because there's no monies associated with this and it's the goodness of these people's hearts to help us out doing chart reviews and the like, we got 35 volunteers and we got volunteers such as JCAHO, we got the Mayo Clinic, we've got University of California, we've got lots of hospital systems, Premiere, we were surprised at the response. Of course we can't take 35 so we'll have to come up with criteria on how to select these and get the biggest bang for the buck with regard to validation. And these really have to do with patient safety indicators.
We also are working on developing new quality indicators, we teased out the ones that we had for the pediatric module but we are also looking at neonatal in particular and we are scheduled to release this next set in winter of 2007 and these are some of the topic areas that people, we have searched the literature for and then talked to users about to see which indicators in which areas might be of interest to them.
Future research proposals, we're looking at additional validation studies within our whole process of developing quality indicators, I've asked that they put in a validation study piece that I can put them out there for validation for people to use them and to give us information back and so we can refine them even further until they're publicly released. We're also looking at linking the quality indicators to other clinical data elements, there's been some research on this, mission data would greatly strengthen the indicators, provides a lot more information, a lot more reliability and validity there. We're also thinking about linking the quality indicators to different data sources, particularly pharmacy, lab value things, those things, things to that effect. And we're also in the market to develop new quality indicators, we're looking at things like ambulatory patient safety, emergency department, ambulatory surgery, those kinds of things.
And we do have an email, we also have a website that's available, it has mounds of documentation, more then you ever would want to know about the quality indicators administrative data and if you're into the weeds that's where you need to go and get the information there. We have a support phone which is available, we do have a support service so anybody who uses the quality indicators they usually turn around in 24 hours response to what you need. And I'm available whenever.
Thank you.
Oh, one last thing, we did have an hour meeting with the Quality Workgroup which I was very pleased, we had a very, very good discussion which we are going to continue in the next couple of weeks and get some more input with regard to what our next steps are with regard to these.
DR. COHN: Mary Beth, thank you, very interesting. Paul Tang.
DR. TANG: Thanks, Mary Beth, it was very, very interesting and really like all of the stuff you're doing with the quality indicators and as you pointed out they are tied to the administrative dataset so I'm particularly interested in what work, you talk about future research but what work you have planned to look, not only on clinical data enhancing administrative data but actually deriving some of the quality indicators from the primary clinical data. In particular the way, in the ambulatory care setting especially the way the denominator, the population at risk is figured is using like the two encounter diagnosis, etc., and there's so many ways that that can produce inaccurate results or inadequately identify the population at risk.
We had done some work looking at diabetics and found that that missed 25 percent of our diabetics, that can dramatically change both the ratio, and ironically you could actually penalize people who are using clinical systems because you have a bigger base because you've identified more of them. What kind of work are you anticipating in that area or how do you want to drill down and explore those limitations?
MS. FARQUHAR: We do have a set process with regard to how we develop indicators, it starts with a literature, well, it's done through University of Stanford EPC Center, Evidence Based Practice Center from AHRQ, and then also the UCSF data, University of Stanford. So Patrick Romano, Jeff Geppert, Kathy McDonald, Cheryl Davies are the core group that have developed these and are working with them and we do have access to that, they are the core, they are the ones that start the process and we go through the literature to determine what's out there first. They convene expert panels with people like yourself that use and know the data and know the caveats and that is quite an extensive process, they do kind of a modified Delphi type thing where you convene, you talk about it, you keep reiterating it until the consensus is met.
Like I said I did want to incorporate a validation piece where we would give it to maybe Medical Center at Davis and say use it, let's see what you have to say about it, where are the pitfalls, let's do some chart pulls, let's do some validation, let's go along those lines. So that's kind of the process, we continually iterate, then they do the ICD-9 codes and all that kind of thing and then resend it out again. The whole process takes maybe about a year and a half, two years, just to get a handful of indicators done and when I say handful maybe ten, maybe, and the cost is anywhere from $500,000 to a million to get these done.
So it's quite extensive, I'm working to get the process a little more vetted, we do have the expert panels and they do convene a number of them frequently in order to discuss questions and come up with results and look at the results and analysis that have occurred. So there's a lot that goes along behind the scenes but it doesn't pop out an indicator.
DR. TANG: So let me ask maybe just to clarify my understanding of what you just said, you started out by talking about a literature review and I guess, my guess is the literature based on clinical data is not really hit yet and I'm wondering how many new studies you might be trying to commission to look at primary measures dealing, based on primary clinical measures.
MS. FARQUHAR: Primary clinical measures, can you clarify what you mean?
DR. TANG: So instead of trying to deduce whether someone belongs in the population at risk denominator use the clinically entered, let's say physician entered data in the electronic health record systems as your indication of, and then vet, validate whether that's in fact true. So if it's on the problem list is it in fact true based on a full chart review and if so what would the new measure, it would actually no longer be two encounter diagnosis within 18 months, it'd be patient is in the denominator based on their diagnosis on the problem list. Do you see, I mean you actually create new measures but you'd have to drill down and figure out what those are.
MS. FARQUHAR: So yeah, you're talking about validation studies is what basically, we start off with measures that are out there and then add to those and validate those --
DR. TANG: Well I guess what I'm saying is would we explore new measures and then validate the new measures rather then validating existing measures based on --
DR. COHN: Paul, I just want to engage you for a second because obviously this is a very interesting topic, but obviously one of the fascinating questions and we probably should at least note it as a research topic is obviously people like Clem McDonald have a long history for example of identifying the value of a lab and would also surmise pharmacy databases. The question is is are they better or worse then diagnoses entered in clinical systems and certainly I think you've already indicated that you're looking at that so for example diabetes, one could surmise there might be a wealth of clinical lab data that might help identify that additional core that you're describing.
DR. TANG: Correct, so in diabetes it's good because you do have hemoglobin A1C and other accessible coded information. With coronary artery disease or CHF you don't because that is not coded, the ECCO results are all in text, so it's going to be harder to query it and validate it in an automated fashion. Yet that is also the kind of diagnosis that's going to escape the encounter diagnosis or you have false positives like the rule out MI or rule out CAD shows up as CAD and could put them mistakenly actually in the denominator when looking at problem lists might get you a more accurate, we actually looked at that as well and that's something where you miss a lot of the population at risk. So I guess I'm talking about new measures based on clinical data versus validating old administratively derived measures.
MS. FARQUHAR: They do start with regard to what's out there first and so identify gaps, they do a combination actually from what I read from the group, they basically look at the old ones and see if they are viable and if they're not they ditch them, but then they look at the other ones and then they start to develop and that's when they go through the clinical aspects of things.
DR. COHN: Thank you, Paul. Kevin?
DR. VIGILANTE: Thank you, nice presentation. I have a couple of questions, a couple sort of straightforward, when a state adopts these measures is it generally that all hospitals in the state have to adopt or agree to adopt or is it still voluntary at the hospital level, and is there consistency as to what indicators are adopted at the hospital level within a state?
MS. FARQUHAR: Right now a lot of the states have legislative mandates that they will do hospital reporting so the states kind of look for what to use and a lot of them use our quality indicators, they use either all of them, a subset of them, a couple of them, two of them, it's up to the states, it's very variable, but all the hospitals because they have a legislative mandate have to report.
DR. VIGILANTE: And how about VA and DOD?
MS. FARQUHAR: VA and DOD, we just started a validation study with VA, Amy Rosen and that group over there, so they are using the patient safety indicators actually.
DR. VIGILANTE: And then finally, this is somewhat more philosophical, we talked yesterday very briefly about the new AHIC Quality Workgroup which John Loonsk referred to and Don raised the question as to what they're going to be doing and I think one of the things that John alluded to was the sort of grappling with the issue that EHRs as currently configured and marketed, that people sort of assume that you'll be able to press a button and it couldn't be further from the truth and that still in the current generation of technology most of the stuff is still either administrative or manual chart review. And I guess I'm wondering for us, this is probably an internal conversation, that this arrives at the nexus of a few things that are very relevant to this committee, both from the Quality Workgroup but the Populations Workgroup as well to look at population quality indicators and then at the nexus of EHRs and IT and I think maybe a fertile area for us to discuss but it would be very well informed by you to help us understand what our role might be as distinct and apart from what AHIC is going to do so that it's not redundant but value added in some way. It's probably an internal discussion we need to have but I think it would be an important one to have.
DR. COHN: Well said, thank you. I think we will have that as an ongoing discussion --
MS. FARQUHAR: That came up during our workgroup meeting, in fact Justine had said it's not automated --
DR. COHN: And we don't have time to go into the complete discussion of strategies for how we approach quality but it certainly is a workgroup conversation. Gene?
DR. STEUERLE: My question is somewhat related to what Paul raised and Kevin, I worry a lot about the development of statistical systems, how they can be manipulated either implicitly or explicitly, I think in education in No Child Left Behind the game in the school system for instance is to push off impaired children into a disabled category and then they don't fall within the denominator which is Paul's issue. In police measurements, crime measurements, there is incentives that have played out among police forces that have allowed claims of rape to be restated as domestic squabbles which then reduces the crime rates in the cities with often sometimes dire consequences for the community that then doesn't find out about an issue.
So I'm just wondering what mechanisms are even going to be thought about, maybe this is so far from where you are in terms of even building databases but what mechanisms are being considered to try to control that type of thing, and one case I can think of in hospitals from an article I read and I have no way, this is not my field so I have no way of measuring its validity, is that at one time hospitals used to do a lot of autopsies and when you look closely at the statistics at least the one study I ready so that they were finding something like about 30 percent error rate, or 30 percent of cases had at least one diagnostic error among the deceased.
And I don't know if it's true or not but only a much smaller percent of that actually where it meant much difference because people who die often have multiple problems but they gradually dropped off their autopsies and of course if they control them internally for the most part is whether they do them then it's not really a random set of pieces of information that might be very valuable. I could see if there was no cost to having autopsy surveys among a lot of hospitals and doing really good comparison that was independent of what, I'm not saying that's possible.
So I'm just curious what do we do to, what is being thought about to put back on the system ways of controlling not only for manipulation internally but occasionally have external people, which is I guess one person, creation of datasets, but external people coming in and trying to see where there are some randomized tests that need to be done to measure quality and is that, Kevin raised this issue, maybe this is a broader issue for things like the population and others to think about, what types of studies do we need beyond what we're going to get out of administrative datasets.
MS. FARQUHAR: I mean this is an issue that even JCAHO has and they keep bringing up about data quality and gaming and those kinds of things. So it is certainly on their performance measurement agenda, overall the whole mean, I mean we had just this discussion, Justine, I don't know if you want to reiterate --
DR. CARR: One thing that is sort of a curious balance is that the financial incentives until a few years ago were arranged so that if you documented and coded a complication many DRGs were going to receive a higher payment, and now those very same complications also count against you in your quality and in terms of pay for performance you can lose money. And so it's a paradoxical balance that has been struck that at the end of the day what you can do is say what is, so it's sort of, I don't think it was anticipated but there is that kind of challenge on both sides, you're going to have a financial impact one way or the other.
DR. COHN: Okay, Bill, I think I will let you make the last comment and then we'll wrap up the session.
DR. W. SCANLON: I just wanted to reinforce both how important this is as well as sort of the fact that we are no where in terms of attacking this problem. I mean the reality is that in terms of administrative resources in health care from the payer's side they're totally minimal, Medicare had problems trying to audit cost reports, which is an aggregate for the entire hospital, the problem that Kevin raised that we don't get this information in an automated fashion but it's actually being manually abstracted means that if we're going to audit there's going to have to be some kind of replication of that process.
The scale that we're talking about here makes that sort of totally prohibitive. Even if we started to think about sampling strategies then we have to think about sort of how do we create a deterrent effect so that when you decide what you're going to do in terms of reporting information that you're not sort of thinking well what happens if I get caught, are they going to tell me to fix it next time and in the meantime with pay for performance I've gotten these rewards for all the years that I didn't get caught.
So we have a real dilemma here, we really want to for a lot of good reasons put more and more reliance on quality measurement but we have a lot of barriers to overcome in order to make that sort of a really effective exercise.
DR. COHN: Mary Beth, should I leave you with the last comment on this one?
MS. FARQUHAR: Just one last comment too that came to mind when I was attending one of the Hospital Quality Alliance meetings, one of the attorney generals, and this is really a cautionary note here too with regard to public reporting, one of the attorney generals, I think it was in Pennsylvania, wanted to start bringing up hospitals on fraud charges because of faulty reporting so again people are looking at this and a lot of it has to do with voluntary and the honor system and trust but there's this other group that is a little more cautious about it.
DR. W. SCANLON: It's more then fraud, I mean there's actually the thing called the False Claims Act which has penalties for every sort of claim that you submit which I think are either $5,000 or $10,000 dollars, and so for an individual hospital the potential liabilities can be in the billions. And yes, there have been these attorney generals that have been imaginative about how they can apply the False Claims Act in this kind of a context.
DR. COHN: We need to finish this section up. Justine, do you have a quick comment?
DR. CARR: I don't want to leave it on the note that there is intentional fraud, maybe there is but I think that the definition, the translation of a clinical term into a code is where the problem comes so whether you call a hematoma is a bruise or a retroperitoneal bleed is entirely open to interpretation. And so I just want to make it clear that I was not implying that people intend anything but you pay more attention to the consistency of your coding and so on and it's not intentional, Lisa Iezzoni wrote about this in her book early on about how the DRG system with the co-morbidity capture increased capture of co-morbidities once there was the financial incentive and they were still completely correctly coded. So I just wanted to make that clarification.
DR. COHN: Justine, thank you. Well Mary Beth, thank you for opening a very rich conversation around all of this stuff. I'm thinking on the basis of these we may even be pulling more people in the quality conversations as we move forward because clearly there's a lot of interest. We may have to reschedule the workgroup meetings from 8:00 in the morning to 5:00 in the morning, we'll figure out the appropriate time --
DR. VIGILANTE: Is the handout available by any chance? The handout, the presentation --
DR. COHN: Mary Beth said that she didn't have --
MS. FARQUHAR: I will go ahead and give it to whoever, you'll have my notes there too because I didn't go over some things because of the time limit.
DR. COHN: Okay. Well, Mary Beth, thank you so much.
Now over the next 50 minutes because I would like us to be able to adjourn by about 10:45 before we start the joint session, we actually have a couple of things that we need to deal with. One is is that we wanted to continue and hopefully complete what's in Tab 3 which is the proposed process improvements. The other piece of the next while will be what I think we will describe as brief reports from the subcommittees and workgroups and discussions of sort of next steps of the committee, which as I said we will obviously move through hopefully pretty rapidly.
Agenda Item: Proposed Process Improvements - Dr. Cohn
DR. COHN: Now moving back to where we finished yesterday, which is Tab 3 under setting priorities, and this is under setting priorities and I'll basically continue on looking on the 4th tab. And I think the conclusion obviously, I mean at least from my perspective and I think what we heard at the meeting and at the retreat was sort of a broad reaffirmation of the vision that I think we brought forward as part of the National Health Information Infrastructure around patient engagement, population health improvement, provider dimension and provider process improvement. And I think we still see that as sort of the area that we're fundamentally engaged in and certainly the conversation this morning doesn't in any way change that view.
I think the other perspective and I just want to point this out is that obviously these three priority areas I think we all think are crosscutting and none of us, at least the view of the Executive Subcommittee was that this doesn't require major changes to the subcommittees and that indeed various committees will move off in various direction and obviously things like privacy and security are sort of underlying crosscutting issues that both have committees but also move into different areas. And I was just reminded just for an example quality, patient empowerment, there may very well be some crosscutting issues there that may we need to be investigating over the next year. But once again I think we sort of saw the broad areas, we didn't come up with new areas that we needed to sort of be working on.
Now I think the final piece here and then we'll talk about this area to see if you have additional thoughts is that obviously we have limited resources and so in all of this stuff we need to be very careful to find places where we can make a real difference, add real value by our work, I think we produce generally very high quality products and we just need to make sure that they're directed at strategic and important areas. But once again I'm looking at what we've done with the privacy report that we produced recently, with what we were seeing yesterday with the NHIN report, I mean I think we're continuing to be strategic.
But anyway, I think I would stop there, obviously the final piece of this final bullet in this area was is that we also need to be mindful that there are things that we need to hand off at times to other groups to do more in depth work and I think that's just sort of a natural evolution, as we deal with the strategic areas there's other groups that are going to need to be doing more focused work in all this so we don't necessarily need to be handling everything.
That was my capitulation of these couple of bullets. I'll just stop and see if people have comments or questions, if we missed something or otherwise. I see Paul and then Kevin.
DR. TANG: Well I think you're right, Simon, that the structure, the subcommittees that we have are functioning and producing good reports. I think there's value in the cross fertilization of ideas so as an example the quality discussion, and I really liked what Mary Beth said about how the reporting templates include how do you relate to the consumer rather than just how do you put out information. That could be a handoff between Quality, well, we used to have PHR group, or the Privacy, we could be giving cross assignments if we understood, if we worked in concert with each other, because we might overlook, Privacy might overlook something that's important to Quality because you can't have quality without the privacy protection and so on and so forth, so more of that would be helpful.
DR. VIGILANTE: I think this pretty well reflects our thoughts during the retreat, although there were some things in the retreat and then subsequently in later testimony and other meetings and I'm not sure how to bucket here, I mean one could be creative. But the issue around research and the role which the NHIN and the ability to share information with both semantic and technical interoperability will enhance the conduct of clinical trials, the efficiency of clinical trials, even at the basic science level or the interface between basic science and clinical trials, then find its way into the hospital, into the examination room where you're actually then delivering personalized medicine, at that end of the spectrum certainly it certainly falls in perhaps the middle category. But still I think the, and I don't think we kind of really have run that idea to ground in terms of our role there because it would probably even imply that there are members of the committee that we would want to have if that were the case that are not on it at the moment, whether it's clinical trialists and sort of people who are informaticists and clinical trialists or informaticists and basic science folks. But I do think it's kind of the, I don't know if it's the next wave but it's an important wave that I think AHIC is not directly addressing and I think it's an important sort of entire domain to be considered.
DR. STEINWACHS: Just a quick comment, it's interesting I think sometimes that we try and think about a variety of strategies to promote crosscutting issues being dealt with and sometimes that can include whenever a committee tackles a new area, whatever that is, is to think about does this have relevance to the patient/consumer, does this have relevance, and to have a little sort of thought list at least to say well if it's relevant then maybe it ought to be covered, if not that's fine. So we want to try and think about are there are a couple of three ways to sort of keep things that we see as sort of crosscutting areas, even like population health isn't just the Population Committee, and is it relevant. And so I find that sometimes helpful just because you dive into something with a lot of enthusiasm in a highly focused area and you don't sort of take a moment to say well are we working the dimensions of that that are important to NCVHS as well as remaining on focus.
DR. COHN: And I think we'll be actually beginning to move into an area which is called developing projects and Kevin, I want you to know that I wasn't by just saying yes, I'm making notes on this so just be aware. Justine?
DR. CARR: I guess there's one sort of tension of us having a balanced portfolio across these three areas versus what is handed to us that has to be done in a short amount of time. And as I look at the three topics, the patient engagement, provider process improvement and population health improvement, and then I think about our areas of NHIN, privacy, standards, quality, population, if we were to make a grid of what's the value that goes, what's the project that goes into each cell, I mean it's not so clear to me where each of these fits. So NHIN I guess is all of them or is process improvement, I guess how do our projects fit into these themes?
DR. COHN: Well maybe we should move on to the developing projects because I think the point we were trying to make is that we are trying to avoid positioning each committee as being solely responsible for one of the domains and that we really thought that things needed to b crosscutting, there needed to be flexibility. And so I think I would sort of turn to you and say we're trying to avoid doing what you're describing except that --
DR. CARR: Well we're sort of a hybrid area, we're a little bit there, we had a Quality meeting with the members of the Quality group and yet everything that we talked about affects all the other things that we do and I think this meeting in particular has shown a tremendous synchrony of all of our projects coming together as we've heard about the presentations yesterday and today. So we're kind of getting there but the real issue is how do we organize ourselves around it. I'll leave it at that.
DR. COHN: Paul and then I see Bill wants to make a comment and then I want to move on a little bit and then John wants to make a comment and then we'll hopefully move into some of the other pieces only because I think we're beginning, as I say I think we're beginning to jump into the place called developing projects and I'd like us to be able to move into that because it seems to be what the conversation is but Paul, go ahead.
DR. TANG: Well this might be, and tell me then I can hold it for later, this might be along the lines of developing projects but I want to back up what Justine said because I'm not sure that when I look at these things whether we are forcefully, deliberately and energetically working on these three areas as we described in our retreat, and could the combination forming project groups instead of subcommittees create more synergy and make sure we hit all of the critical barriers or enablers that are needed to advance these three dimensions that we've identified as high priority. So that might be the same thing as projects but it also might call into question our organization structure on a temporary basis even.
DR. W. SCANLON: I actually find that, I think it was organized into two camps, sort of one sort of HIT camp and I'll include HIPAA sort of as part of that since it involved electronic records, and then sort of potentially, and I don't have a good label for it but a data applications camp. And both need to be focused on these three objectives, individual health, population health and sort of what I will call system sort of health. And that we shouldn't be doing anything with respect to privacy, security, etc., without thinking about what the implications are for all three of those areas.
And from the application side what I think of our role is in part is to identify some needs and to feed those needs into some of the deliberations that are going on the IT side because the IT side in some respects is setting sort of the parameters for the future in terms of how we might have used data to improve these three sort of areas.
And we need to sort of, there's a sort of a dialogue that should be going on between these two sides that reinforce one another in terms of moving forward on these three objectives. But I'm not sure that it would be good to be structured around three because you end up sort of having to deal with both sides of this and there may not be sort of kind efficiencies in doing that, the efficiencies may come from the specialization that we've got now with enough sort of interchange between the two that we sort of, we really sort of utilize sort of each other effectively.
MR. HOUSTON: I'm going to get on my soapbox for one second, I've been saying this for a couple years though, I think there is still some fundamental incompatibility, that's the wrong word, I think there's some area where we could improve the committee structure and I think the one I've been saying for a while is really security and I think that if you look at now how the AHIC Workgroup and the fact that they now have a workgroup that's focused on privacy, confidentiality, and security and the fact that we still have security lumped with standards and not with privacy, I think that causes security to take a, maybe get missed somewhat, I mean I know I deal with security but I'm really not on, I don't involve myself with the Standards Workgroup because of all the other things that they're doing, I think it finds a much better home on the Privacy Subcommittee and I think that it does then align with a lot of what's going on I think with AHIC and otherwise.
DR. COHN: Marjorie and then I want to, what I'd like to do is to get these next two bullets on the table and those two major sections and then have a more general conversation since we're jumping to that.
MS. GREENBERG: That's a segue into the next topic obviously and I just wanted to mention that when I prepared this summary, I had the summary from the retreat and then my notes from the Executive Subcommittee meeting, but then after, subsequent to this being done I got the draft minutes from the Executive Subcommittee meeting which are now out for review by the Executive Subcommittee but then will be circulated to the full committee, and that did definitely come up at the Executive Subcommittee with at least the way the minutes sound and I guess we'll have to see if everyone else heard it that way but kind of a general agreement that Security probably should be with Privacy. At least that's the way it came out of that discussion but I don't think there was a final decision.
Agenda Item: Developing Projects - Dr. Cohn
DR. COHN: No, and let me jump in, let me talk about structure and developing projects just because I think we're beginning to get into that and I know Paul wants to comment but I'd like to get these on the table also. And as I said you can agree or disagree with the Executive Subcommittee, how we sort of tried to put things together and obviously what I'm describing to you are, I mean we heard a lot of things at the retreat, we heard north, south, east and west and we tried to sort of figure out what made sense and how we should sort of try to move forward.
Now in terms of structure, we've talked about that some, the view was I think was well expressed by Bill Scanlon, that the view at least for the moment we were not talking about changing subcommittee structure except that we felt that there needed to be workgroups, especially ad hoc workgroups set up as topics demanded so that we could sort of have at least from our view the best of all worlds which is project focused activities that cut across workgroups depending on the issues plus also ongoing areas of focus and expertise.
Now we actually just to speak of security which in my memory is a little different then Marjorie's, and it only is different in the sense that I've been advocating for what you're describing now for some time and would suggest you take it to the Privacy Subcommittee and see if you can general agreement about it. But for the moment, but having said that I would observe that 60 percent of what we're talking about with the NHIN Workgroup is around security and when we looked at that and realized how much of it was security related we thought that that was a good holder for security for the moment. Now whether it's an ongoing piece that will go away and we may have to put it somewhere else, but I mean as you look at that that is a major security project, it has other things but security is so fundamental to that piece that that really is a security vehicle for the moment which is we have you so closely involved with it. So I mean that I was I think how we had sort of resolved it, not as a final solution but as a temporary one.
But anyway, we're recommending ad hoc workgroups to sort of give us some flexibility in all of this and indeed there may need to be some changes to the fundamental structure, but the committee, at least the Executive Subcommittee didn't feel that we needed to do that immediately to assure better functioning of the committee. We felt that there was value to have consultants to assist and I think we're seeing a very good example with the ad hoc workgroup and Margret A. being involved, and obviously this general idea well of course we'll use conference calls whenever possible but we still need to have face to face meetings.
Now let me talk about developing projects for a minute because I think at the end of that I'll stop and we can all talk about this one because these are all together and I apologize, I should have put them all on the table together.
We feel that there really is a lot that goes across subcommittees and workgroups and everything else, we're not such a big group that we want to have silos going on, and one of the ways that we, at least one of the things that we had heard from everybody is that as groups start thinking about new projects and a lot of them will percolate up through existing workgroups and subcommittees, we thought it was very valuable that at the very beginning, not halfway through and certainly not just at the end, that the projects be brought to the full committee for discussion, input, to find out if there needs to be additional involvement, in other words is this idea really something that gets handled by a subcommittee, do we need to set up a special workgroup, do there need to be people from one group to join the other so that we have a full view of activities, once again allowing some flexibility in structure and making sure that we're seeing things at the very beginning so that we can provide things.
And we've seen many examples where projects have gone on and about three quarters of the way through we say oh, there's a privacy issue here, and then we suddenly have to pull in privacy people, let's try to do that up front and I think that was once again a recommendation just as an example, and there may be quality, I know quality oftentimes meets and wishes they had standards people involved, let's do this up front and think through it as we start rather then half way through a project.
Now obviously joint projects between subcommittees and workgroups along the same view should be encouraged when appropriate, once again that feeling of basically flexibility and trying to adapt based on the project. Obviously there's a view which I think we all believe is that there's really a full cycle of issues that we deal with and of course depending on what the maturity of the thoughts are outside we may deal with projects all the way from vision through implementation, there are some areas where there's been a lot of work already that's gone on and so we may just deal with a specific part of it but we just need to be aware of the overall cycle. And I think we heard that from everyone during the retreat, that sort of vision that we really needed to be sort of continually aware of the full cycle of activities that occurs on all of this.
Obviously the periodic reports will be made to the full committee by subcommittees and workgroups and I think the intent there is really to have better reports, and I will apologize, at this meeting we're talking about getting things out to people early, we're thinking about having additional time for reports, and of course even despite the fact that we've all been primarily talking together through the whole session we're not going to have an extended time for report out from the workgroups and committees today just because of our timeframes. But I think that will be the intent assuming that everyone agrees as we move forward, as we design for example a November meeting and all of that.
Now let's see if there's anything else, anyway, I'll stop there because I think many of you have addressed all of this stuff. And the question is is the Executive Committee tried to take multiple different inputs from all of you and tried to put something together which we thought was flexible, had some stability, but flexible, and the question is is do you think that this meets your needs, is it something we should try on, or did we not get it right. Paul deserves a comment because he raised his hand earlier but then Mark is next and then Justine. Paul, did you want to make a comment? You had had your hand up earlier.
DR. TANG: I strongly support what you just mentioned, in other words doing things up front in a full committee way, developing the project and then farming it out, or having really a multidisciplinary project team, so in that model I think the projects will drive what the subcommittees do instead of the other way around because the subcommittees are sort of domains and by nature will be tethered to where we were. I mean when we look at either the retreat or new ways of designing things and try to think out of the box and just to take this morning just as an example at hand, quality arose from using data that's there, whether that was what we needed or useful. If we took consumer engagement in their health then our target would be what does the consumer need because the quality reports as we know consumers don't read our quality reports and change any of the behavior yet it does affect providers almost by the Hawthorne Effect, so we can have Hawthorne Effect with any measure we describe and disseminate but if we redirect our target audience as the consumer we might be thinking completely different kinds of measures. That then could drive through this project what the quality group does, what the privacy and the standards group does, but it'd be starting from a completely different place and that would be from the place of having a project on engaging consumers in their health.
I think there could be fundamentally a breakthrough in the way we, what we actually do and how work gets done both at the project level and the subcommittee level so I think that's what you're describing, that's my interpretation of what you described.
MR. ROTHSTEIN: There is a very important theme that was discussed at the retreat that has not survived to the written form and that is that all of us wanted to do 100 new things but we also mentioned that we, and we may have things thrust upon us by Congress or the Department, and yet we have difficulty meeting our requirements now. And so I think we have to be very careful about our enthusiasm for redesigning restructuring, doing all these things. If we had a committee of 50 people and a staff that's three times the size then I think all of us could think of all sorts of neat new subgroups or workgroups or subcommittees that would address one issue or another and we could do all sorts of neat things. But we don't, and so there are very practical reasons why some of the illogical aggregations of topics are where they are, I mean we've talked about the security issue for at least five years that I'm aware of and there's no question in my mind that the best solution would be to have a separate subcommittee on security. Moving it to privacy I don't think would work for two very practical reasons, number one is the workload would be increased, and the second one is the lack of expertise certainly in the chair on technical issues related to security. So we have to do things recognizing that they are not the best solution but it's maybe the most appropriate given our constraints.
And I certainly agree with everything that was said about the need to think more broadly, to integrate as much as possible people from different perspectives and so forth in our decision process but I think we are maybe selling ourselves a little bit short in saying that, or if there's an implication that we don't do that now. We could probably do it better but I know we do it now, just thinking back to the privacy letter that we spent all this time on, the issues of population health and empowering individuals and all these other sort of broad concepts, they played a role in virtually every issue that we discussed and we sort of had to work through it from both sides, or multi sides. I think that's right, I think we ought to do that but it's not like it's new, maybe this should be sort of posted on the door for each subcommittee before we walk in, we say okay, we need to do all these things mentally and check them off. I would be reluctant to endorse sort of sweeping reorganization under the theory that we would work better given our constraints.
DR. CARR: I think one of the things we heard at the retreat is using our resources appropriately, namely the members of the committee and the expertise of the committee, so one helpful thing is we probably all know a little bit more about what each person brings to the table in part by the summaries but also by having these collective discussions. I find that the way we're structured now is fragmented so I might for example spend time in Standards and Security listening to something very interesting but about which I have nothing to contribute and then things that come up in Quality that are related to Standards and Security there's not a critical mass to discuss them.
And so I would find it more helpful that as we get on to a topic we look around the table and say here are the areas we have to cover and then look to our membership and say all right on this task how about these folks get together and address these various issues so that you come prepared with expertise and you have the complement of people as you were saying, Mark, you can't do security because you don't know all that technical stuff, so we're constraining ourselves I think by having, if you're a member of a subcommittee you go to that subcommittee and if you need the expertise it's very cumbersome to get that into the discussion or to leverage that for the work product.
MR. REYNOLDS: The current structure I think still works pretty well from the standpoint of the base thing that we have to do, I was just, what I want to present today on our next hearing we've got, those of you that want projects be careful that you want projects, I'm saying to you I'll go through later a list of our projects that go on and on and on because it is a subject that goes on and on and on, NPI, I mean some of these other things, they take multiple years to do things.
So we have a standing list of things we have to do, I really like the ad hoc idea and I think the ad hoc idea has two pieces to it, it's the ad hoc idea as to whoever's committee it appears to fall into or whatever subject area or whatever people we need but I think it also includes everybody around the room that as you hear new things to get involved, to say you want to be involved. It's not a one way thing, if you listen it sounds a little bit like a management discussion, once we come up with new committees the world will be fine, or once a committee chair or somebody else decides who all they need then everything will be fine.
But I think we've got some of these subjects, I mean the NHIN for example, I'd say everybody on the committee probably had 25, 30 percent of their time where they didn't actually get what was being said on certain things at times but putting together the entire structure and process of what's going to drive a whole lot of what's going to happen in this country going forward, we need a lot of help and a lot of you that don't think you understand the actual functional requirements sure might understand what ought to be some of the base characteristics, otherwise you're never going to get to the things that you call your committees because you're never going to have the data, you're never going to have the structure, you're never going to have the process and you're never going to have some of the other things.
So I just want to make sure that we all engage and we stay engaged because these subjects are changing, they're changing fast, they have their multi, and some people may come based on an agenda and I think that's going to be the better trick because as soon as we come up with a brand new idea of what the new committees are we're going to be asked to do something where we're going to have another subject that's just going to make a change. So I think the base structure looks pretty good, the ad hoc really worked good in this case and we were able to take two or three sets of people from different committees and pull this off and it was not because of any single committee's work, it was because of the expertise that we had because this was a little bigger than any committee we have or had set up. So that would be my input.
MR. HOUSTON: I'm going to disagree with Harry and with Mark, I think that probably, I agree with Mark though insofar that I understand he doesn't understand security --
-- [Laughter.] --
MR. HOUSTON: And I don't mean that to belittle him, I'm probably the only person on this committee that does that as a day job and I originally was on the Standards Subcommittee and I got off it because 90 some odd plus percent of what was going on there was stuff I didn't understand and had no interest in trying to understand, and I think it's either an odd stepchild but it is an area that I agree with Simon is one which is going to be pivotal in the way things are going with NHIN, it's absolutely vital I think and it does link with privacy, whether we like it to or not it gets lumped together with privacy, when you look at people talking about privacy they often talk about security and vice versa, and it needs to get more attention because it hasn't gotten the attention that I would like it to partially because it's sort of, I'm not really participating in the committee where it's really aligned with.
Now I agree with Simon in the short term, I think that its sort of found a home under the ad hoc workgroup and that's great and I think the way we're trying to approach security is appropriate but I think that it is going to need to get more attention in the future and I think it's going to be topic for which we can either try to emphasize, and I think there's a value in emphasizing it, especially as we get more definition about what the NHIN is --
MR. ROTHSTEIN: What are you saying, are you saying that it should be a separate subcommittee or are you saying that it should be sent to privacy?
MR. HOUSTON: I still think there's great value in it being part of privacy because I don't, though I think in a perfect world we'd have a separate subcommittee I guess I'd probably be sitting in a room alone because I doubt that anybody else is going to want to do it.
MR. ROTHSTEIN: That's why I recommended a separate subcommittee --
-- [Laughter.] --
MR. HOUSTON: Again, I probably have concluded my comments but I would just, I hope people will reconsider this and again maybe in the future as they look at new participants on this committee or maybe staff support that we get some additional people that understand security to some degree, at least security policy, maybe not the technical part of the security but at least security policy because I think that it is something that is going to be important for this committee to have some expertise and some leadership on.
DR. COHN: Okay, now I'm going to have two more people talk and then we need to wrap this piece up. I just want you to realize as you reflect on all of this stuff why the Executive Committee came up with the recommendations it did because there isn't a single view on the full committee on all of this and I think this is going to be an evolving thing, this is called further retreats, further futzing of things at the margins and changing things as we go forward. So I just want you to be aware of that, I mean there's nothing here that's set in stone, I want you all to think about whether or not you can sort of live with what it is we're describing.
Now Harry you had a comment and Gene you did and then let me wrap this particular piece up.
MR. REYNOLDS: I do do some security in my day job but I don't want to be on John's new committee, and I don't want him to know that I understand it.
I don't personally have a problem and I said this in the Executive Committee, I have no problem with security moving to privacy but I think it still in itself is a very simple statement, where it fits and how it interrelates, all this stuff is going to interrelate more and more so no matter if we move it over there there's still going to be discussions of going in the Standards Committee that are going to include security. There's still going to be discussions in privacy and the letter was one of them that have security.
So I think it's a subject that you almost can't disconnect from anything that we're doing and so the hardest part is if you make it its own then you might as well pull a bunch of people, you're going to pull a bunch of people over when you have the meeting because it's going to need, it's going to be packaged with everything else that's going on.
So I totally agree that it is a subject that needs elevated but it probably needs elevated and then spread out too because every subject that hits it takes it and moves it into an area or NHIN for example, it's a base requirement of everything that we do, if you don't have privacy you don't have security you don't have some of the other stuff, authentication, then game over before you even get started.
So I think that's going to be the struggle that we'll have to make sure, but again, back to grouping up the right people as we come up with these subjects and that may be an ad hoc workgroup that may for example if it really is focused may have John as the chair of that particular subject but pulling in people from the other ones to in fact adjudicate a subject and then we move it back to whatever we do.
DR. COHN: Gene, last comment.
DR. STEUERLE: To me this discussion is not unfamiliar with a lot that I've had in terms of organizational structure and of course one of the issues here even beyond the usual organizational structure and executive branch is committees are usually not very efficient forms of organization to begin with, so you've got to add that on to it.
I think it's a mistake to think of sort of one size fits all or one type of matrix to which we have to fit everything. Bill divided our task up into two areas, I have a little different type of two way division although it's not too different. One of them is I think one of our roles is to be uniquely out there to try to identify gaps in information systems and data that are useful to the public, to providers, but ultimately with the one single goal of improving health, right, I mean that's ultimately the goal we're about.
And the second thing that we tend to be about is we tend to be at times providing, let me use the architecture but not in the narrow sense of information systems or anything else like that but an architecture for sometimes trying to achieve these things so the architecture might include holding hearings or it might include, we actually have a committee that tries to figure out what suggestions we make in standards and in some cases we have people on this committee who have worked seven or eight or nine or ten years on particular parts of the architecture, I know how long Mark has been working on privacy, but there's an extraordinary amount of expertise there so sort of no matter what structure you'd come up with I'd want to try to figure out how to maintain that.
That might be very different then John coming in and saying I want to do something in security, I mean does this mean he may need to have a system of identifying some issues occasionally on an ad hoc basis or does it mean we need to create something that creates sort of a full five, ten year architectural structure, and what I worry about is I think our skill sets are very different, some of us are very good at the identification but not the architecture, some are better at the architecture, and some issues we just don't have the resources. There's not many of them we can really get into what I'm calling architecture anyway, and I also worry that we're not very good at sort of dropping things that we're doing a good job for things for which we could do a better job and that gets back to the first area where this identification in the needs and the gaps and stuff like this is important.
And I still haven't got a sense that on the NHIN that we've still fully worked out with HHS what our role is now that they're taking on more and more, have we really figured out when we can drop some things, no matter how good were at it maybe we can drop that part and just say I'm sorry, this is your responsibility, or we'll participate but our role is going to be, we'll hold the hearings because we know that's our relative advantage but we're not so sure anymore it's our relative advantage to do this or that.
I don't see that we've really sorted that out but I think the biggest mistake is to try to fit it all into a matrix, it may be for some areas we do things very much like Paul says on a project specific basis and if you've got a particular individual who wants to take off on some issue, I don't know that it has to fit into the committee and subcommittee structure, I think Justine has said that in several, or suggested that in several different ways too.
DR. COHN: Gene, thank you, and I want to thank the group, let me just make a couple of comments and I'd like to, I mean this feels like the retreat and we could spend another day and a half talking about this particular topic. But I would just observe in just sort of looking around there are certain things that fit very well into the subcommittee structure.
I would also suggest to you there are probably some things that don't fit very well and I can think of one of them, unfortunately for John Paul, security, at this point, and I would also suggest that quality is an area that has not so far fit very well and part of its been that we don't know exactly what we're, I mean we're still figuring out the overall strategy and our place in it and what we do with it will depend a lot on how we structure and move forward on it. So if it's a consumer focus then obviously we deal with things in one way, if we're talking about performance measurement and all that we would likely deal with things in a very different way.
So I think we need to, I guess we just have to be aware of that, we don't have a solution for everything and depending on what we do with some of these things, I mean it's the reason why we were suggesting a hybrid approach which will give us some flexibility to meet these things as we come up with them. Obviously we're also suggesting that workgroups and subcommittees be sort of the place where generally we come forward with project ideas and that will not always be the case, obviously if HHS asks us to do something that isn't out of a workgroup or subcommittee. But once again the idea is to bring it to the full committee so we can all talk about it, prioritize it, make sure it's something we want to commit to early on.
Now having said all that, works in some cases, I mean I think that we're coming up probably with a reasonable set of recommendations, the good news is is that we'll probably have another retreat in nine months or whatever and we'll have our chance to make further modifications and all of that but I guess I would ask based on what I've heard that generally hopefully everybody is okay that we move forward with this hybrid structure for the next year and try it on for size. Is that okay? Okay.
So that's that. Now let me just briefly talk about these other two pieces and then we'll go into subcommittee and workgroup updates.
There was a lot of conversation about adjudication of the letters and reports and of course we managed to violate just about everything here at this meeting, so let's see, all members will receive draft reports at least two weeks prior to the meeting, hopefully we'll do better for November. Members will be asked to submit their edits to the respective subcommittee or workgroup chair prior to the NCVHS meeting, well, discussion to the NCVHS meeting will be limited in reviewing concepts and recommendations rather than wordsmithing, we actually did pretty well at the meeting on that one and I think we, obviously I think these are things that we all need to be aspiring to whenever possible and obviously we'll be sort of emphasizing this.
Obviously fundamental to all of this is getting the letter done or report done quickly enough and we just need to be aware that we're imperfect in all of this but I think there's, I think this hopefully encapsulated most of your views of the world and I think we just need to strive to do what we can on this one. Certainly I think the view would be is that a major product for November will be the yearly HIPAA report and hopefully we'll have that out to everybody in time that we can get some comments back and so that we don't, that will go a little smoother.
So hopefully people are okay with that?
Now the next piece is dissemination of letters and reports and I think this is an area where, I mean the conversation was very valuable. I think we've all sort of come to the idea that major letters and reports need to be, need to sort of maybe while they're passed as a letter they need to be reformatted and I'm sure many of you can think of the personal health record or the NHII report, that really became an actual report.
And I think the view would be is that we will be doing that a lot more with major pieces, part of the NHII letter that will happen, I mean we might do that on the privacy and NHIN letter that we produced, once again making it more approachable to people. I mean some of it is obviously wording as Jeff described yesterday but also it's making it an attractive professional, professionally looking report that draws people in and I think we're all sort of seeing that. Now the other piece is obviously list server getting the information out to people.
The final piece I think we've already done other then my inviting people at dinners to present what they do in their live but obviously we are beginning to do exchange in member expertise.
Now with that if people have comments on this last piece please let me know and otherwise we'll draw this piece to a close and move into subcommittee and workgroup review. Final comments here? Gene?
DR. STEUERLE: Just really quick, I wouldn't mind having a 15 minute discussion at some point with members of HHS on what really happens to these letters and whether they really are in the most useful format, I'm sure the Secretary doesn't read them, is it basically that Jim Scanlon just takes the letter back, I mean I just, we're asking ourselves what's the most useful format but we might ask the users. Maybe Marjorie feels like she knows already --
MS. GREENBERG: No, I think actually when we did talk at the Executive Subcommittee about quite a few of the reports or recommendations from the past year, we actually haven't gotten any response on which is on the one hand concerning, on the other hand we know that things take a whole to sort of ferment and digest and we heard yesterday from the Office of Civil Rights that they are now starting to come back to some of the issues we've raised over the last two years. So this isn't like I say you do this and you do it, it just doesn't work that way with an advisory committee and particularly in some areas. So frankly as we're approaching putting together our annual report to GSA which we have to do we are concerned that a lot of these recommendations or a lot of the things that we've done in the last year we haven't even gotten a response to.
So I think that is clearly our first audience, first and foremost audience is the Department. But I think in this repackaging and it's really going beyond the departmental audience, I think for the Department we're not going to package things more attractively, etc., necessarily for that audience because it really, that's not the issue. But I think in reaching more broadly the overall health industry, the constituency, which this committee has always had a much broader reach actually then just recommending to the Department, then I think packaging and looking at new of disseminating and publicizing the committee's work may have some value.
DR. COHN: I also want to remind everyone that I think when all of our recommendations were last looked at it actually turned out that we probably are among the premiere advisory committees within the federal government in terms of the number of recommendations that actually get implemented. Some of that is HIPAA, some of that is e-prescribing, for a variety of reasons but we must be doing something right in terms of all of this.
DR. STEUERLE: Mine wasn't criticism, I just said if you're thinking about repackaging let's ask our users how to repackage.
DR. COHN: That's a good point. Okay, Steve, final comments on this and then I'd like to go --
DR. STEINDEL: Simon, I'd like to ask Marjorie to reconsider the comment she made about whether or not we should package things the same for the Secretary as we do for the outside audience. I think one thing I've observed from this Administration is they're very sensitive on the packaging of the message and if we repackage our message in a way for the Secretary maybe the Secretary will read the information.
MS. GREENBERG: I personally do feel this an area that we can't discuss now, we don't have time for it, but that does need some concentrated attention, both within the Department and more broadly.
Agenda Item: Reports from Subcommittees and Workgroups - NHII Workgroup - Dr. Cohn
DR. COHN: Well with that let's move to just updates from the workgroups and subcommittees. I basically just want to, I actually want to thank everybody, first of all I'll start off with the NHIN Workgroup and obviously we met yesterday and I want to thank everybody for spending the time and providing input into the report that we brought forward. I think we all came away feeling that it's actually pretty good and maybe it's not the 80 or 90 percentile at this point.
Now we are going to be having an open conference call because we think it's important that we get wider public input on the document since really nobody had seen it prior to yesterday and we are scheduling that for October 3rd, it will be 10:00 a.m. eastern time to 1:00 p.m. eastern time, I'm sorry, 10:00 a.m. to 2:00, so four hours, 10:00 to 2:00 eastern time on the 3rd. We're also going to be arranging an open conference call for the committee members just to provide any additional input into this. We are going to be presenting at the NHIN Forum as you know and I think there's some discussion which we've not resolved at this point exactly when we as a committee should have a formal meeting to actually ballot and consider the report and we will obviously keep you all closely engaged in the conversation about whether it should be actually before the next NHIN Forum or shortly thereafter. I mean as I said it will be in October at some point but I would say our next intent is to get some wider public input into all of this.
MS. GREENBERG: How was the October 3rd date selected?
DR. COHN: During the NHIN Workgroup meeting, so anyway, that will be publicly announced.
Now that is the NHIN Forum, Harry, do you want to talk about --
MR. REYNOLDS: As you know the whole committee was part of NHIN so we're going to take those pins off for the October hearing, go back to our regular business, and we'll be focusing, you heard yesterday from Karen Trudel on the status of NPI nationally, WEDI wants to come and talk to us again about what they're doing and I would think, Simon, that we may end up doing some kind of a letter possibly out of that meeting on the implementation of NPI.
We're having four presentations around the subject of e-prescribing, Russell as we mentioned and the NDC code implications of it not being complete. The NLM will come talk to us on mappings. We're going to hear from the five e-prescribing pilots that have been going on for CMS so that should be interesting to see how e-prescribing is actually rolling out. And then hopefully hear more then Karen gave us on the DEA/HHS discussions as far as what's going to happen on the scheduled drugs.
The SDOs are going to come talk to us about streamlining the process as was mentioned by Jim and others, it's in the Health IT bill so some of that passes we'll get more on that. Some more CHI recommendations on disability and that's our prescribed schedule.
Back to our earlier discussion, those are standard offerings that we have to keep an eye on and that will take up our whole next hearing.
DR. COHN: Marjorie?
MS. GREENBERG: Just from the point of view of action item then there may be a letter for November on the NPI and there may be a letter on the CHI disability.
MR. REYNOLDS: That would be correct.
DR. COHN: Okay, Privacy and Confidentiality and not security.
MR. ROTHSTEIN: Thank you, Simon. I want to tell you about the two hearings that we have coming up, the first one begins this afternoon at 2:30 and I'm sure everyone recalls that in the privacy and the NHIN letter recommendation R-12 provides that we are recommending that there should be a comprehensive privacy protection that goes beyond the three current covered entities of HIPAA, and so this afternoon we wanted, and carrying over until tomorrow, we want to take up the issue of suppose some measure were enacted by Congress to extend the coverage of either HIPAA or some other law, what affect would it have on these currently non-covered entities so that we can make recommendations that are responsive to their particular needs and avoid overlaps with laws that are currently regulating them and so forth.
So this afternoon and tomorrow we're going to hear from three panels, the first one is made up of insurers but not health insurers, so it would include representatives of life insurance, disability, long term care and so forth. The second panel, employers, and the third panel, schools, and we're interested in exploring the FRPA/HIPAA issues.
The next subcommittee hearing is scheduled for November the 30th and I believe there's an error in our books that lists the next NCVHS full meeting as the 27th and 28th because I believe it's the 28th and 29th because our subcommittee hearing would be on the following day, Thursday, November the 30th. And the topic for that is something that we've talked about in the full committee as well as the subcommittee for several years and that is trying to devise a research strategy to try to measure what the effects are of the privacy rule in various domains. And so let me give you an idea of the kinds of witnesses, we haven't invited anyone yet, to testify. We would want to talk to sort of experts on survey research, we might want to talk to experts on research methodology, the sort of the RANDs, RTI experts who could at least conceptualize some questions and some methods for looking into that, and then possibly some of the nationwide collectors of related data that might be able to capture for example privacy complains, so JCAHO, Federation of State Medical Boards, AAMC and so forth, we might want to hear from groups like that.
I think it's very much in the developmental stage and I would very much appreciate if you could send to me or to Maya any recommendations of specific individuals or entities to testify or ideas that you might have about how to approach this topic and this is really I would think a sort of prototypical crosscutting we need everyone's input into try to pull this off.
DR. COHN: Okay, Mark, thank you very much. And by the way actually the November meeting, I think you may have been looking at 2007 dates but the meeting --
MR. ROTHSTEIN: I'm sorry, yes, you're right, I was looking at the wrong dates.
DR. COHN: I looked too and had a start for a second, our full meeting is on the 28th and 29th --
MR. ROTHSTEIN: Far be it for me to assume that the staff made an error, more likely my error.
DR. COHN: Okay, Populations?
DR. STEINWACHS: Populations, we have a hearing coming up, we call it a workshop, decided not to call it a hearing, on Monday and Tuesday, and it deals with data linkages to improve health outcomes and with the help of Joan Turrick(?) and also Dale Hitchcock I think has been involved and certainly Gene and also Nancy Breen have had a major role in shaping this.
And we're bringing together really a broad array of agencies that deal with data that has a relevance to health as I've ever been exposed to and so this cuts across the Census Bureau, HHS, I won't go through all those, Social Security, the IRS, we know who is the heart of health issues but have the data on important things that deal with income, socioeconomic status, Department of Education, Veterans Affairs, and then we also have some outside people, academics and so on coming. And so trying to look at what's been learned from the successes so far in linking datasets and inform our understanding of health and what are some of the barriers and are there areas in which we could focus potentially recommendations or advice that might help build stronger capacities for data linkages for research and other purposes.
So we're very excited about that, we also have been moving ahead as we shared with you before on exploring what we might do related to what we call surge capacity and Bill Scanlon and Kevin have been taking the leadership on this. We have a staff person who is at ASPE, Dr. Doug Benning, who is working with Kevin and Bill to begin to try and lay out what we might do as again probably a workshop thinking in January.
There are a lot of interested stakeholders in this, some of it ties very directly to preparedness, some ties to quality issues also and so we need to focus but see this as an important area both measurement, standard setting, and an area that very appropriately we ought to be involved in.
The third we had a very brief discussion about but there was also discussion at Executive Subcommittee that in 2002 we produced the report on a Vision for Health Statistics in the 21st Century and that maybe now is the time to take a look at that and to look at two questions, one is to what extent have we made progress, and it's about five years out from there by the time we would be doing something, and secondly was raised are there things that have changed over that period of time and are there aspects as we think about that vision that ought to be redefined, clarified.
And I think very importantly pointed out by the committee members is that the vision is right now up at this level which is appropriate but does it help us think about on the ground are there specific areas that in the next year or two years that we might focus on that would really help move that that are concrete, we see the data linkages in that area, we see some other things but I think going back to the vision also helps take a big view and then say well where do we dive down in order to have some big payoffs.
DR. STEUERLE: Can I just add a footnote to that? I know many members of the committee can't make the hearings on Monday and Tuesday but I've got to believe many of you in the course of your careers have thought about you know I just had this data linked to this data, that would really be enormously helpful. So if you have just questions we should be posing to these people that'd be very helpful, and some of the limitations on why these linkages aren't taking place or do fall into other areas like privacy, we know that one of the major reasons we don't get Census linked to IRS data is some interpretation of 6103 or some row which is limiting access to data.
So if you have particular questions you think that would be useful or particular ways of posing it which says if this was linked to this I think we could improve health for this or we can't do this in creating an information network unless we would have this linkage, I mean that would be really, just send them to Don or me or any of us and these are the types of questions we want to pose to the audience.
DR. STEINWACHS: We'll ask them and we'll bring an answer back.
DR. COHN: Thank you. Bob?
Agenda Item: Reports from Subcommittees and Workgroups - Workgroup on Quality - Mr. Hungate
MR. HUNGATE: Quality is once again on the agenda, crosscutting issue it inescapably is and I want to start by welcoming Mary Beth whom you've now heard and been introduced to as our new lead staff for the Quality Workgroup and to concurrently thank Michael Fitzmaurice for his work in getting the topic of the quality indicators understood within our workgroup and getting us involved in that and getting Mary Beth involved.
So those are two critical steps in what I am coming to think of as a new set of if you will quality indicators which are in fact going to evolve to being vital in health statistics. No, we don't think of those sorts of things as that sort of label but in fact what's needed now nationally is reliable quality indicators to if you will merge the interests of payers, providers and consumers in a language of measurement in the health care system. And so this is just really the tip of a very huge iceberg but we're coming in at a time where AHRQ has dome some very important work in generating composite indicators and has initiated an external evaluation which RAND is going which will result in a report that Mary Beth referred to in November.
And that kind of sets the stage for further investigation if you will of what the pitfalls and potentials of this program are and that should lead to a hearing or a workshop, what that really will be is yet unidentified and I would expect from that finally then a report coming out of that which would be in effect an HHS endorsement in leadership of the important content that its involved with. So there will be a follow-up conference within the committee which we'll invite others to participate in if you have interest in doing so, so we'll notify all of that as it comes and then follow it as I indicated by either a hearing or a workshop.
So we welcome all your participation, thank you.
DR. COHN: Well thank you all for the updates. The Executive Subcommittee will have a conference call sometimes probably within the next month to plan out the November schedule, there obviously isn't a lot of time between now and our November meeting, obviously any inputs from all of you into issues that you'd like to have addressed or any additional conversations you'd like to have on any of the topics we've discussed to date are always welcome. We will also of course as you know be putting together an open conference call in October to consider and ballot the NHIN document.
Now I realize we're running a couple of minutes late and I think what we're going to wind up doing is obviously taking about a ten minute break and then reconvening in a joint meeting. I just wanted to take this opportunity though if anybody has any comments about, as we always do at the end of our regular meetings ask for things that you'd like to see improved, comments you had about the meeting today, anything that would help us in terms of structuring the meetings going forward.
MR. HUNGATE: I'd like to commend and thank all the discussion that has taken place in the context of this meeting, I think that's what I've always felt we should be doing and its I think certainly helped and happened in this meeting.
DR. CARR: I'd second that, I feel as though we are benefiting by having the discussion by the whole committee and I think we're more synchronized or there's, it's easier to see how everything fits in, at least this meeting has been extremely helpful.
DR. COHN: Okay, well with that as I said I do apologize, we are running a couple of minutes late but let's take about a ten minute break and then we will reconvene as a joint meeting with the Board of Scientific Counselors.
[Brief break.]
DR. COHN: Okay, why don't we call the meeting to order and does everybody have a seat? That's the big challenge.
DR. COHN: Well I want to call this meeting to order. This is a joint session of the National Committee on Vital and Health Statistics and the Board of Scientific Counselors of the National Center for Health Statistics. I am Simon Cohn, I'm chair of the national committee, I want to welcome the committee members, obviously the board members, and obviously others listening in on the internet and others here in person. And obviously remind everyone as always to speak clearly and into the microphone so those on the internet can hear us.
Why don't we start with introductions around the table and then around the room. As always if there are any issues coming before us today I would ask in your introduction if you would indicate that there are such conflicts. I do want to start off by indicating that I have no conflicts of interest on all of this.
Now I should comment that what we will is do is to do introductions and then June and I will both help frame the conversation of the next couple of hours and then we'll be asking both Bill Scanlon and Irma to make some additional comments before we actually move into the presentations. There is also an intent for us to have a lunch break, to at least go upstairs and get some lunch, somewhere around 12:30, just to frame that.
Anyway with that, June, would you like to introduce yourself?
DR. O'NEILL: I'm June O'Neill, I chair the Board of Scientific Counselors and my other life I'm a professor at Baruch College, an economics professor at Baruch College of the City of New York.
DR. STEINWACHS: I'm Don Steinwachs, Johns Hopkins Bloomberg School of Public Health, member of the National Committee on Vital and Health Statistics, and I have no conflicts.
MR. BLAIR: Jeff Blair, Lovelace Clinic Foundation, member of the committee, I don't have any conflicts.
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the NCVHS.
DR. SNIPP: Matt Snipp, I am a member of the Board of Scientific Counselors and I am also a professor of sociology at Stanford University, I have no conflicts.
DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and Quality, liaison to the national committee, staff to the Subcommittee on Standards and Security.
DR. CARR: Justine Carr, Beth Israel Deaconess Medical Center, members of the committee, no conflicts.
DR. W. SCANLON: Bill Scanlon from Health Policy R&D, member of NCVHS, no conflicts.
DR. STEUERLE: I'm Gene Steuerle from the Urban Institute, I am also a member of NCVHS and I have no conflicts.
DR. SCHWARTZ: Steven Schwartz, I'm wearing three hats here, one head three hats, member of the Board of Scientific Counselors, I'm the registrar and assistant commissioner for vital statistics, New York City Health Department, and I also represent NAPHSIS, the National Association of Public Health Statistics and Information Systems that represents the state vital statistics offices in the United States.
DR. POWE: Neil Powe, a member of the Board of Scientific Counselors, I am a professor of medicine and public health at Johns Hopkins University and I have no known conflicts.
DR. NORWOOD: I'm Janet Norwood, I've worked in the federal statistical system for a long time and I'm currently doing a number of associated things at various places, and I'm a member of the Board of Scientific Counselors and I don't know of any conflicts.
DR. KOEPSELL: Tom Koepsell, I'm on the faculty of the University of Washington as an epidemiologist, I'm a member of the Board of Scientific Counselors also and have no known conflicts.
MR. WEINZIMER: Rob Weinzimer, National Center for Health Statistics, and all my conflicts are within NCVHS.
DR. SONDIK: Ed Sondik, I'm the director of NCHS, CDC, and Rob never has any conflicts.
DR. CAIN(?): Virginia Cain, executive secretary of the Board of Scientific Counselors.
DR. KALSBEEK: My name is Bill Kalsbeek and I'm from the University of Carolina School of Public Health, Department of Biostatistics, a member of the Board of Scientific Counselors and I have no conflicts.
DR. LEPKOWSKI: I'm Jim Lepkowski from the University of Michigan Institute's for Social Research and a member of the Board of Scientific Counselors and I have no conflicts.
DR. RYAN: Louise Ryan, Department of Biostatistics at the Harvard School of Public Health, no conflicts, and a member of the Board of Scientific Counselors.
DR. ELO: Irma Elo, I'm from the University of Pennsylvania, I'm a member of the Board of Scientific Counselors and the liaison to the NCVHS and I have no known conflicts.
DR. HERNANDEZ: Don Hernandez from the Department of Sociology and Center for Social and Demographic Analysis at the University at Albany, I'm a member of the Board of Scientific Counselors and I have no conflicts.
MR. LOCALIO: I'm Russell Localio, Department of Biostatistics and Epidemiology, University of Pennsylvania School of Medicine. I'm a member of the committee and I have no conflicts.
DR. TANG: Paul Tang, Palo Alto Medical Foundation, member of NCVHS, no conflicts.
MR. HOUSTON: John Houston, University of Pittsburgh Medical Center, member of the NCVHS, I have no conflicts.
DR. VIGILANTE: Kevin Vigilante, Booz-Allen Hamilton, member of the committee, no conflicts.
MR. REYNOLDS: Harry Reynolds, Blue Cross and Blue Shield of North Carolina, member of NCVHS and no conflicts.
DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of NCVHS and no conflicts.
MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, member of NCVHS, no conflicts.
MS. GREENBERG: I'm Marjorie Greenberg, National Center for Health Statistics, CDC, and executive secretary to the NCVHS and want to welcome the Board, appreciate you coming downtown and meeting with us this afternoon.
MS. SYDNEY: Cynthia Sydney, staff to the committee.
MS. KANAAN: Susan Kanaan, writer for the committee.
MS. HARRIS: Althea Harris, staff to the committee.
MS. CHOY: Colleen Choy.
MS. HORLICK: Gail Horlick, CDC Atlanta, staff to the Subcommittee on Privacy and Confidentiality.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC, committee staff.
DR. MOYNE(?): Mary Moyne, NCHS.
DR. HOLMES: Julia Holmes, NCHS.
DR. ROTHWELL: Charlie Rothwell, NCHS.
DR. VENTURA: Stephanie Ventura, NCHS.
MS. FARQUHAR: Mary Beth Farquhar, AHRQ.
DR. BICKFORD: Carol Bickford, American Nurses Association.
MR. RODEY: Dan Rodey, American Health Information Management Association.
DR. KILE: Frank Kile, American Dental Association.
DR. COHN: Okay, what I want to do is just start out before I turn it over to June to just extend obviously our welcome and talk a little bit about the purpose of the meeting at least from the NCVHS perspective. Obviously first of all I'm delighted that everyone is here, this meeting is actually been in the planning stages for quite a while.
I think as you all know the national committee is the main public advisory body to the U.S. Department of Health and Human Services on national health information policy. Our responsibilities include advising HHS and its agencies and the HHS Data Council on health data, statistics, privacy, and national health information infrastructure. While our responsibilities are program wide and Department wide there's obviously significant common interest in relationship to health statistics and in particular the National Center for Health Statistics after all the NCHS is the main statistical and health advisory body to HHS, it is certainly not by any accident that the executive secretary of the NCVHS is from NCHS and we have close ties obviously with Ed Sondik and others within NCHS. We're also obviously delighted that we have Irma as the liaison from the Board of Scientific Counselors and we're very pleased also that Bill Scanlon represents NCVHS at the Board meetings.
Obviously our intent today, and we'll be asking Bill and Irma to further comment, is I think to discuss, we're trying to put together an agenda which we think speaks to both the board and the national committee in terms of areas of concern relating to national health statistics and obviously the national center in particular. And obviously they'll be commenting after June comments.
While the agenda today I think really lists the concept of collaboration I actually do want to also bring up another issue, or at least another frame upon which we can think about the next couple of hours and that really is one of synergy and I feel very strongly that there are synergies that do exist and we probably should be augmenting between the Board of Scientific Counselors and the national committee and obviously that's going to be I think some of the conversation we have today. So as we think through a couple of the issues that will be brought up I want members of the NCVHS as well as the Board of Scientific Counselors to be sort of thinking about that and that will be some of our sort of next step conversation. Obviously collaboration is one type of synergy but it is really only one type and I think we need to think broadly.
With that, June, let me turn it over to you for your welcome and introductions.
DR. O'NEILL: Thank you, there are obviously many overlapping features of the Board of Scientific Counselors and the NCVHS, the board however, the BSC, focuses more narrowly on the statistics themselves. A large part of what we do is traditional oversight and in a minute I'll tell you a little bit about that and you will later hear more about that from those who are involved at the national center. But the national health statistics are really extraordinarily important, health consumes a larger and larger portion of not just the federal budget but also GDP generally speaking and health outcomes are extremely important and the health statistics are really our access to finding out what is happening.
So among the concerns, of course we're concerned how excellent, what the quality of the data are and for that purpose we have organized more traditional, we've embarked on a more traditional oversight role of inviting external review groups to examine the different programs within the center, we started off with vital statistics, we completed one on mortality and one is, we are going to hear about our second area which is the natality today at our meeting this time.
In addition to the oversight role we are of course concerned about many of the same things, the issue of we would like to have the data disseminated as much as possible. There are of course concerns of privacy which happens, we very closely allied with the data of course are the research who use the data and who would like to have better access and there are obvious issues of privacy that come in there.
We're also concerned about resources generally that are devoted to health statistics, one of the unfortunate things that frequently happens, data and research have no, do not have lobby groups and therefore I think in the budget process they frequently get shunted because it's a public good and it doesn't, there is no political constituency advocating more funds for research. And one of the issues that I hope we can take up and that would be of mutual interest I'm sure with all of us is the extent to which the various programs are being adequately funded, and whether the funding is being appropriately disseminated across the various kinds of statistical programs.
Well, I don't say anything more, Ed, I think you will do the introduction of, the vital statistics group was our first program that we began our oversight work on and Charlie Rothwell from the center and Steve Schwartz who is a member of the BSC are going to make some comments about some of the issues that arise in the vital statistics. I can't remember now in the agenda, I think it's time for Ed. Bill, were you going to say something? Bill and Irma --
DR. COHN: Bill and Irma, and then we will let Ed make some opening comments also, and Ed, thank you for joining us.
DR. W. SCANLON: I'll just make a brief comments, in some respects echo what Simon and June said, Irma and I I think have reported to you at various times about the common interests that both groups have and I think that there is a question then given those common interests sort of how can we in Simon's words sort of develop a synergy that makes the advancement of them sort of more effective.
I think part of this relates to the fact that the tasks are in some respects the ultimate purpose for both groups is so big, I mean we had a strategic retreat in June and I was kind of somewhat surprised by how quickly we got to the big picture which was we want to improve sort of the health of individuals, the populations and the health system sort of through information and data. And given that as your objective you can think that there's just an endless number of things that you need to do and our retreat also sort of dealt with the fact that how do we sort of maximize our impact as a committee and how can we divide up and then come back together and we just had that discussion within the last hour about the use of subcommittees, etc., to be more effective. And I think that it's good that the Department has two groups because this sort of increases the resources in these areas but there is a question of there is any way that the two groups can reinforce one another in terms of its achieving a greater impact.
I think we're at very important times, I mean there is, as June said there often isn't a good constituency for the right data, there's often a constituency for information or data that sometimes is harmful, there's a lot of noise about data these days and there's also a lot of potential for changing how we gather data through the use of information technology. And so I think where we are now in terms of shaping sort of what's collected, in terms of shaping how it's collected, will be very important for the future and so I think the role of these two groups as being very ripe for this moment and the idea that we should think about sort of how do we interact is important. I think today is a very sort of useful first step because greater familiarity is probably a strong catalyst for sort of thinking about the synergy that Simon mentioned.
DR. ELO: I don't have much to add, I second everything Bill said, I think the question to me mostly is where are the overlapping issues and overlapping concerns, both committees are very busy and I'm sure everybody is thinking I don't want to take on many other more responsibilities certainly in light of the work of the NCVHS that seems to be working all the time. And I've attended these other parts of three meetings of the NCVHS and where I see the closest linkages is really much of the work of the Populations Subcommittee as it relates to improving data and the hearing that they have organized for Monday and Tuesday of next week on data linkages across the federal agencies and how those could be used to improve our understanding of population health I think is directly relevant to the work of the BSC as it relates to NCHS. And in fact in the Populations Subcommittee we discussed the possibility of, and maybe this is one of those synergies, of representatives coming from the Populations Subcommittee to the BSC meeting in January to discuss how that workshop went, what are the next steps that will be taken out of that, so that's one example where I think there is a synergistic interest.
The other issue that we brought up today where I think it is actually quite important is these issues of confidentiality and privacy and how they overlap with this health information technology and building the National Health Information Network. And part of that I think the vital statistics do play an important role and I don't know how much we get to the discussion of it today but at present I think the demands that are put on the vital record system and the lack of funding is really threatening the quality of the data that we will have. Out of the natality review and we will come to that but we really don't, will not have comparable data across the country on birth records or birth data, which is quite shocking, vital statistics is really the basic way that this country collects information on mortality and fertility and at present some of those systems are in jeopardy and I think that's another topic where there could be certainly overlapping interests between the two committees.
So other kinds of synergies that I think might happen, and I don't know whether they are subgroups or input from one group to the other or whether there are joint letters to the Secretary or how that might work in the future but I think those are some of the issues to explore.
So I think, I don't want to say anything more but I hope we have a good meeting and I'm looking forward to hearing your comments about the work that we're doing.
DR. COHN: Irma, thank you. Ed.
DR. SONDIK: Okay, well thank you, thank everyone, especially those who have worked so hard to actually have this happen and I won't single you all out but the people who've just spoken and Virginia and Marjorie and Rob on my right, I think this is great. I'm reminded, not to give a long story but Kathy Walman(?) who is the chief statistician of the U.S. often talks about the federal statistical family and I somehow feel like the two wings of the NCHS family somehow are having this joint meeting together and I hope everyone will behave themselves, you know what happens in those kinds of atmospheres.
I think this is really a terrific beginning, Jim Lepkowski said I just thought this was a normal occurrence and I hope it is normal, that we periodically get together to talk about topics that really are of mutual interest and mutual really importance to the missions of the two organizations. And I think we're beginning today with a couple of topics that are really kind of important and Irma kind of introduced that in what you just said, the vital statistics are really fundamental to the information we have on health and for that matter health care as well, especially in the way they link to all of the surveys we do and other information that is gathered both at the national and the state and the local level.
And the first topic that we're going to address I think shows the twin forces that have always been there but now are very much in front of us, twin forces but opposing forces, the one on the one hand is that we want, we know we need this information, we want to make it as readily available as we can, and on the other hand we've got confidentiality which has become even more important with the expansion of technology and our ability to link various sources of information together. For a number of years now this is one of the topics that has really worried me and I wasn't particularly concerned in relation to the vital statistics until I guess it's about two years ago now when this issue really raised itself at a NAPHSIS meeting and it became clear that there were issues that we were not addressing. So I think it's perfect in fact for this first topic to address these issues.
So with that let me turn it over to whoever is first on the agenda, Charlie or Steve, Charles says youth before wisdom but he didn't really mean that. Steve. So much for family.
DR. SCHWARTZ: I have a Power Point presentation, I'll just remind you again I'm from, I'm the registrar in New York City so I'm responsible as I tell some people for live and death in New York City --
DR. COHN: Before we do the Power Point, Steve, I'm looking at the logistics here and I'm just sort of wondering do we have your presentation --
DR. SCHWARTZ: Only visually --
DR. COHN: Only visually, in that case we need to see it visually, if it was here I'd say we should just walk through it so they don't get blinded but we'll just have to blind them.
DR. SCHWARTZ: So just to remind you, the two hats, both responsible for vital statistics in New York City and representing types like me which is a scary thought, the state vital statistics offices in every state. I tried to come up with a catchy title, Vital Data Release, Why States Say No, I'm from New York City, we say no all the time. In fact as it relates to data release some people call me Dr. No.
Just a quick thumbnail on what the U.S. Vital Registration System is, it is a state function, it is a cooperative system, there is not a federal law that requires states to send data to NCHS, it is cooperative in that NCHS pays for the data and we send it. The Vital Registration System has two complementary functions, one is civil registration, the enumeration of all life events, births, deaths, marriage, divorce, terminations of pregnancy, and civil registration means we issue, we're also a, we issue certified copies of birth and death certificates. So another one of my hats when people ask me what I do sometimes I just say I'm in retail because we sell a lot of certificates. And then for this group of course the second really critical function is the collection of public health data.
The system started out with those two purposes of civil registration and collection of public health data but today there are many new risks that didn't exist when we first started several hundred years ago, identity theft, national security, and technology changing. Birth certificates just as an example are used for proof of citizenship, they are called breeder documents, they are breeder documents from which spring very important documents, I've listed four categories here, Social Security cards, drivers licenses, passports, and to some people the most important Little League enrollment because it's the proof of age for what tier the kids are in.
There are 57 vital registration jurisdictions in the United States, the 50 states, five territories, we could have a quiz about which those are, District of Columbia and New York City the only jurisdiction that is actually physically contained within another one, we'll call it New York States, and NAPHSIS represents all of these jurisdictions. And I will use the term states throughout the presentation if you'll give me the leave of considering New York City as a state, we often think of ourselves as a state.
So as it relates though to our discussion today on data release states, there is not a national law about data release, the data are owned by the states, states have their own laws, regulations, rules, policies, and procedures on data release and as you could imagine the states don't always agree on what they are. And we actually don't have to agree but one of the challenges for NCHS is how to actually come up with a national policy on data release because we all send the data to NCHS, how can that data be released and still protect the confidentiality and comply with state laws.
And states are really quite different as it relates to not just public health data release but even to the release of their own birth and death certificates, some states are totally open where that you could in some states that you could get anyone's birth certificate and you don't have to have any identification at all, you could simply ask for it. Some states are restrictive and say no not anyone can get it but a newspaper reporter can get the birth certificate so they are restricted in a sense. And other states, New York City and most states actually are called closed record jurisdictions where you can only get a certified copy of a birth record if you have a direct and tangible interest, if you're named on the certificate, if your parents are named on it, and then that's it.
The other thing is is that in addition to the legal certificate of birth or death on a birth certificate there's also a confidential medical report, that's the source of the important public health data that many of you use and some states also have a confidential medical record of death. And that information, the confidential medical report, is confidential even to a person named on the certificate, so on a birth certificate the person named on the certificate, the registrant, cannot get a copy of the confidential medical report of birth. And we don't let decedents see the confidential medical report on the death certificate either.
Also now what's changing is that there's national security legislation that will tighten access to vital records and vital data. You may have heard of the Intelligence Reform and Terrorism Prevention Act, Real ID Act, both of them directly relate to birth certificates and matching birth and death certificates to essentially in the recognition that birth certificates and birth data can be used for bad purposes.
Well why are vital data special? Why are we talking about vital statistics? Are they really different from other forms of data, public health data? There are some things that make it quite unique, the data, the inclusion in the database, that is your birth or death is mandatory, the data are gathered without consent, it's a requirement in every state. And it is universal, unlike most datasets that we use that are samples we have the universe and even in for government purposes or public health purposes where you'd say some people can choose whether to use the services of government for births and deaths you don't have a choice. And in fact there is an incentive, you need a birth certificate for many legal purposes so that's why we really do get complete enumeration of births and deaths.
Birth and death data are also attractive targets, they have a lot of information on them, it's sensitive data, pregnancy history, it has full identifying information, and of course it also has public health information.
Vital data are also special because there are risks is people refuse to provide the data, if it turned out that people knew that there were inadvertent releases of data of confidential information collected on birth and death certificates, especially birth certificates, if people knew that that was getting out to the general public where it could be misused then people won't want to actually comply and provide full information when they're filling out the information on a worksheet for a birth certificate, they're going to say geez, maybe I don't want all of this information in the national database.
So here are the challenges, and I present these, Charlie Rothwell, head of vital statistics at NCHS, will present what the, if not solutions at least some of the compromises we've come up with in how we actually hope that the balancing act of the public health benefits of collecting and sharing these data and making them available to researchers, obviously the research opportunities are tremendous, the balancing the personal/privacy threats, the risks of identity theft if the data are misused, national security issues as we are all too well aware, and also complying with state laws.
We're also faced now with the risks created by technology, in the old days not that long ago when we actually had security provided simply because most people couldn't spin a tape, so you needed a mainframe, you needed something to mount the tape on, and now of course the datasets are portable, they're easily copied, there are many other databases that can be matched against vital statistics databases so technology as you know creates a lot of opportunities and also a lot of risks, these of copying and sharing data just furthers that.
The other thing is is that the enforcement and penalties are weak for doing something bad to the data and since I actually work in an operating agency, a local health department, though a really big one, we have, we sign data use agreements all the time and people take them very seriously we think and people just like you around the table or your colleagues signing data use agreements promising that they're not going to give it out to anyone else, there will be no redisclosure of the data, it's only going to be used for the purpose for which they're intended, that the data will be destroyed after the use, and then in fact we find whoops, I didn't realize you meant that. So I didn't know I couldn't give it to a graduate student, I didn't know, geez, I'm in the department of epidemiology I didn't know I couldn't give it to a colleague, I didn't know I couldn't use it for a class presentation, I didn't know that you really meant that I was supposed to destroy it or geez, so I kept it for a while, but we say but you said you weren't going to and you signed all this so who's responsible when that happens.
Let's say a graduate student uses it for his or her dissertation, what do we do to that grad, do we hold the graduate student responsible, do we hold the faculty member responsible, the academic department that was responsible for allowing this release, the school, the university, a federal agency, this has happened and it's not necessarily malicious but the point is is that you sign a data use agreement and then somebody breaks it. It's a contract where a state law is broken or local laws, who enforces this, who prosecutes it, imagine trying to go to a prosecutor or a district attorney and saying yeah, we want to go after somebody because he gave the data to his graduate student, imagine a Law and Order series on special victims of data release.
So it's not sexy enough to prosecute, we've actually tried to prosecute not so much on data release but on other things that are actually more important where on wearing my hat as registrar where people illegally dispose of bodies or body parts, so how do we get people's attention when it's actually, when sometimes we've gone to prosecute somebody for illegal burial and disposition of bodies and we have a case that's gone on for six years now after we've tried to get a district attorney to take responsibility for it and imagine if we were, we can barely get their attention for something as important as that, what do you do on something like data release and somebody misusing the data, and they'll say well can you prove harm and well, is that really the standard if they have in fact broken their contract.
And again in my own little jurisdiction where we've had researchers say I will definitely not release line item data even though I really needed it for my research, and then they do release it, even though they released it de-identified they didn't follow their agreement. So a lot of what we're pinning our next steps on our the cooperation and expectation that people will sign data use agreements and will meet them, just as people do in their real lives, right, they sign something and then they stick to it.
So that's the challenge for us but all the while that the goal is to maximize as we say here the use of vital statistics data for public health purposes while protecting confidentiality and complying with state laws and regulations. So it is a tremendous challenge to balance all of these needs and I hope Charlie will provide you with the answers.
Thank you.
DR. ROTHWELL: I'm Charlie Rothwell, I work at the National Center for Health Statistics, I head up the Division of Vital Statistics and in a previous life I did work similar to Steve at a real state.
-- [Laughter.] --
DR. ROTHWELL: But that was before he was born.
When we talk about data release at NCHS and specifically with vitals let me go through what I mean by that, specifically with vital statistics. We have reports that we release on vital statistics obviously and there are three types, one of which is done every month, although delayed, every month. And it's based on counts, we get counts from states on records, no information about what those records contain but just counts so we can do general mortality rates, general infant morality rates, and natality information, and that's provided on a regular basis. There is no data back-up to that, it's a publication without public data release.
And then when we get down to 90, 95 percent complete of files and we're really trying to get those last set of records really complete we then publish data, and this is the data that you probably see in the press all the time, it's more current than the final release and basically it's based on the analysis of incomplete but mostly complete data file, and very little changes from it to the final release. There is no data release at the end of that.
And so finally we have final data and that is when we feel that we can only do, this is as good as we can do with the data, we finished cleaning as much as we can, and we release in a publication form the final, whether it's mortality data or natality data, and with that we make available our public use files, so that's the first time that researchers or analysts or whoever have access to our files.
Now based on that what do I mean by public use files and what did I mean and what do we mean now? Public use files, what NCHS means, are those files that you don't have to say who you are or why you want to do something or what you're going to do with the data, you ask for it we give it to you. And that is pretty much one of the areas that has now changed, that Steve was talking about a balancing act and I'll get to what that change is but what was formally on that public use file. Basically all the information that we collect on mortality or natality except for the exact date of the event and geographic specificity, and that is in the old public use file or what we've been operating under, the public use file did have some collapsing of geographic specificity, we only showed information for counties greater than 100,000, so anything smaller than that we don't show that county information, and for the linked file, what is it, 250,000, and so that was the cutoff.
The other policy was if you're a researcher and you needed to get more specific information many times that was for more specific geographic information because many of those smaller counties or just where researchers want to look at, they would have to come in and ask for that information and we would review that request and they would then have to sign a data use agreement.
So what's changed? Where are we? Well, the public use file, the one that I would even let Steve use, has absolutely no geographic specificity in it, it is a national file, it is complete in its content except that you don't know where the event took place, it happened in the United States and its territories, you don't know whether it was in New York City, New York State, or California but you have all the other demographic specificity that we can provide. And it does not have exact date of event which it never did. So the major change is is that if you want our file you get for mortality data the two and a half million records or so but there's just no geographic specificity in it. So you can say as much as you need to say about the U.S. and about a very small demographic group in the U.S., race, ethnicity, age, whatever, but you can't contrast North Carolina with South Carolina, Charlotte with Spartanburg, whatever.
So what are we doing? We basically have come up with a two tiered approach to the release of information that's more specific than the public use file and that is that if in fact you need to have, if you're a federal employee working in a federal agency or are a contractor under control of a federal agency doing that federal agency's work, you can come in and request for the use of more specific information, that is you can ask for all county information and you can ask for exact date. And if in fact the review of that which will now be done not just by my staff but staff, state representatives as well, if that review says that this is an appropriate use of this information then again the person will sign a data use agreement and basically what Steve was pointing out, saying that what we've specified we're going to use this file for is the only way we're going to use the file, that we won't give it to our friend, we won't even give it to Ray Greenberg as much as we trust Ray, Ray is going to have to come in and ask for it himself even though he sits right next to you, he's not named in this data use agreement.
So you can get this information through this type of procedure. What we don't know right now is how many requests like this we're going to get because after all the former public use file we really didn't keep track of who was asking for this information because they just got it, so whether we will be overcome by many requests coming in that were formerly filled by the public use type file or not I really don't know.
Now when we get to the non-, the release of information to the private researcher, whether they are at a university doing their own work or even at a university working under a federal grant, it's a little different, that is that they can come in, ask for the information with more geographic specificity and if in fact that it's approved then the same procedure will take place as with the federal researcher.
However if they need to have exact date of the event, which is one of the most sensitive elements that we have because it really does easily identify who that person is, then the researcher is going to be, even if approved is going to be requested to use our research data center which as many of you probably have heard in various other presentations is sort of a stand alone facility within NCHS which is not connected to any other computer system or anything else where someone can in fact have access to these files and only these files and then their output is reviewed and they walk away with their results.
So what's the problem? Well, I really don't know what the problem will be, we'll have to wait and see, but my friends in EPA and other folks that are really interested in exact times of events, whether they're looking at weather issues or other types of issues in exact locations, or at least as exact as a county is, they really don't particularly want to use the RDC. And why don't they want to use it? It has nothing to do with the RDC and how it operates, it's how they operate, they're putting this information into a large database with many other elements and then they use this for analytical purposes at their own site, it would be impossible for them to bring it into the RDC. So that potentially is one issue that's going to impact the availability of our information.
There may be many others that I don't know about but it was a balancing act as far as what states were comfortable with, what their laws say and how comfortable they were with the interpretation because after all laws can be interpreted in a variety of ways, how comfortable they were with the interpretation of their state law that they would be covered by such a use of this data and re-release of the information because basically that's what we're doing, we are re-releasing state data and so what states don't want to have happen is for Charlie Rothwell to come to Steve Schwartz, ask for New York City information and Steve say no you can't, and the Charlie comes to NCHS and asks for the same thing and we say well sign this data use agreement and there you go, that's what we're trying to preclude.
Is this the best of all worlds? No, it's not, it's what we could hammer out, took well over a year to come up with this and I thought it was not what I wanted but I thought it was probably the best that we could get from a federal national perspective based on how vital records operates as Steve was telling you.
Is it the end of the world? No. Is it where we'd like to be? No, and I'm gong to give another presentation which is going to tie back into this a little bit later on which will make it more clear why this may have more ramifications later on than it does right now.
Are there any questions?
DR. W. SCANLON: Charlie, does this affect the National Death Index?
DR. ROTHWELL: No, it does not, but the National Death Index has its own, it never did have a public use file, you did have to, you do have to come in and provide a much, much more detailed proposal than you do even for what I'm talking about here. But I'm glad you brought that up, states are extremely concerned about how the NDI data is used and that is that the NDI data is just really a small event, it's the end state if you will on a long record, if you're doing longitudinal studies, for example, that's just on the end of that sucker --
DR. SONDIK: Charlie, why don't you just explain what the NDI is.
DR. ROTHWELL: The National Death Index, if you're a researcher and you want to track what's happened to your population that you're studying and you want to know whether they have, that group has expired in the last year or five years, in the last five years, then instead of going to all 50 states or 57 territories and dealing with nice people like Steve you can come to one organization that operates under state review and get that information and we match up your files with ours and then provide you back either that the person has died or not and if you've asked for it for a little more money we'll tell you what the cause of death was. And a portion of what you pay for goes back to the states and a portion of it operates the system, so that's the National Death Index. And one of the concerns that states have had recently with the National Death Index is how long are you going to keep that file out there and how long do you need that indicator on that file because the states would like for once you use the information to get rid of it. So it's a balancing act on research needs versus issues of legality and how long you're going to keep that file and do you have to come back and request that you keep that indicator there or the cause of death information over X number of years.
DR. O'NEILL: Whose rule or regulation is it that governs what gets released on the public use file? Was that a center or from a higher authority?
DR. ROTHWELL: It is agreement between us and the states and basically why didn't we just tell the states look, we've never had a problem before, we've always used your information wisely, we're good custodians, good guardians, when we have a problem then come back and talk to us. The issue is is that if we're in violation of their state law, if they sign a contract to provide us the data to us and the data release policy that is written into that contract for them to provide us the data is in violation of their data release law in their state then in fact Steve could be fired because he's signing something that is in fact at variance with a law that he's governed by. So in actuality what we're doing is this is part of the contract that we have with states so this new data release requirement will be made a part of, and that's a great question, out of our contract with states so that we can't then just say well we're going to forget about that, that's in the contract, and then the states are protected because they can show their legal folks that in fact this is the data release that we have in fact signed off on.
DR. O'NEILL: I was wondering whether there was any, has there been any kind of study or analysis of what is the probability of identifying a person if you knew the state plus had the other information.
DR. ROTHWELL: For some of the events, we've done some work on there but the issue is not again, we would argue that maybe this is too stringent but the issue is what is the state law and what can be done. And what we could have done, for example a solution could have been, and as my staff was giving me all these possibilities which none of them I liked too much, was that we'll handle every state differently. If five states can give us everything and including giving the most specificity from a geographic perspective we'll put that out there. And then if New York City only wants to provide the fact of the event and that's it then we'll put out there. But then you don't have a national file, you really don't have anything that was comparable and so what we went back to was well let's have something at least from a national perspective that an analyst could have some feeling of comparability. Obviously data collection routines differ in every state but at least we have the same data elements out there and you have some idea of what you're working with.
And I'm not bringing up the natality issue in this one but there are problems with the natality which has nothing to do directly with this but it has to do with different datasets being provided to us which sure I don't think we want to do is when we do get the same dataset to then break it up in different formats based on issues of what we can and can't release. So that's why we went with the national file, that was basically why we went that route.
DR. ELO: In the process of negotiating with the state did you get input from outsiders at all or was it just between NCHS and the states?
DR. ROTHWELL: We got input from various outside agencies but unfortunately they wanted more release than we were doing right now so from a negotiation perspective it wasn't helpful, I mean we just weren't at that position to give them what they really would like. And what they would really like would be look, you've been doing business with us for 30 years why can't you give me the entire file, have I ever, is it something I said, did I do something last time I was at your house, what is it about it that's changed all of a sudden. And that is unfortunately, I make fun of it and I shouldn't because whenever you say no to somebody that you did say yes to and they've been good users that's not good business but we try to explain as best we can.
DR. NORWOOD: This is really a major issue not just for vital statistics but for federal statistics in general and it's interesting that in some areas there are recalcitrant, what I would call recalcitrant states, who for good reason have decided, not release of data but have decided that they didn't like the way the federal government was treating them in one or another, and they're right about that by the way, and so they prevent the release of data. This came up a great deal in the discussion of this new CIPSI(?) law which permits the researchers to get into some of the micro data from the largest statistical agencies. And a couple of the agencies felt that, and this involved in particular, one of the issues that I know about is the one involving unemployment insurance data and several of the states to this day refuse to permit anybody to use the micro data. And they have the legal right to do that so it really is a negotiating kind of thing but it goes beyond the two, the state or the city and the agency, it can go to what other agencies are doing or what other people are doing or whether the Congress has treated the budget properly. It's a very complicated business.
DR. ROTHWELL: One of the other things I didn't bring up, and Steve touched on it just briefly, is that times have changed and so when we use, when we have a public use file and even though people that we know who have gotten it, or we think we know who've gotten the public use file, haven't abused it, they then can put that file up on the internet and then other people can use it and abuse it. And no one knows where the problem is and that's another issue I think that was of concern to the states because they yell NCHS we trust you, and we might even trust the second party, but it's the third, the fourth, the fifth, the sixth and all that and we feel that we need to put more structure on you at the beginning and that's what's happened.
DR. COHN: Let me ask sort of two questions, and I'm obviously trying to get my arms around all of this but on the one hand obviously you're talking about a lot of process changes, obviously my fundamental concern is to make sure that this doesn't have a chilling effect on our understanding of the health population. And I can't tell by the way you're describing this whether or not this will have a chilling effect or not so that's question number one. And question number two is that I find it sort of interesting, obviously it's one thing to have public release file and it seems like there's also a new process that is being described around release of sort of the custom individual level files that involves a veto power by NAPHSIS. Is that really, that didn't used to be that way did it?
DR. ROTHWELL: No, we never, I'll take that one first because that's what I remember and then you can remind me what the first one was. We always, what we've done at least since I've been in the division is to review those special use requests within our own staff. So for example I would be one of the reviewers, the branch chief who is responsible for the file would be one of the reviewers, the branch chief responsible for our systems activities would be one of the reviewers and my deputy would be, so this wasn't pawned off on smart but junior people.
But one of the negotiation points we had was that the states wanted to make sure that we were doing a good job at this and the states do have, and picking up on Jim Scanlon's question about the NDI, we do have a review group for the NDI and the review group is in fact almost 70 percent outside reviewers and there are NAPHSIS reviewers within them. So they number one wanted to have a NAPHSIS person on this review group and then because they don't have a whole lot of people that can put their time on this, they didn't have many to assign to it, so if in fact they had a NAPHSIS person on the group and we always outvoted them then weren't we playing a game. So what I'm assuming is that that NAPHSIS person is going to be very responsible and is going to be there not to provide a veto but to be there to provide a different viewpoint on things and hopefully they'll operate the same way as we do. So I'm hoping that that veto won't have to be used by themselves, we veto things within our own organization quite a bit, my guess is we're all going to see it the same way but I'm a positive person.
DR. SNIPP: Is it the case then that a state could exercise veto power over the disclosure of information, for example if you had a state that forbid the disclosure of HIV infections or death by HIV, is it the case then you would then eliminate that information from your national system?
DR. ROTHWELL: This is how tenuous, we're the longest existing health data collection system in the U.S. so there was somebody in my job in 1850, okay, and the Division of Vital Statistics by the way in Census, so its been around a long time, it wasn't me. HIV, yes they can, because in fact even though we negotiate with NAPHSIS which is a representative of states, have state representatives on it, we do not contract with NAPHSIS, the states come together and they agree on a process and they agree on giving these people responsibilities to negotiate for them. But in the final analysis if Steve wants to say I'm not signing this contract and I'm not providing you any data, or I'll sign the contract but I'm only going to give you half of the data elements that you want then I've got a decision to make. Do I take that, take what I can get, or do I just say well goodbye, I'll give your money to somebody else so I can get something else? So that's how tenuous things are. We haven't come to that yet, there have been some minor issues along the way with some states where we've had to make accommodations but nothing of any major, well, to a researcher in certain areas they might be of interest but they're not really significant.
And let me get back to the first question that I think I just remembered, is there a public health consequences to all this at least right now, states publish their own vital statistics information so it's not like the information isn't being published and much of that information is actually in much more detail than I would ever publish. In fact some of their publications you could take that information and I think identify a variety of people within their states but that's their own concern, if they're in violation of their own law that's their problem, but we're a different animal. But they do publish this information and some states do provide data use agreements in files for researchers and that they can get more detailed information.
I don't think it's going to have a real chilling effect now but I do think in my next presentation you might see an area where we're going to have to think about this, and Steve, do you want to --
DR. SCHWARTZ: I think there is an opportunity though for leadership here and I'm not sure its been fully exercised, and that is that I think what is compromised at NAPHSIS and NCHS has agreed to on data release policy is essentially a reaction to existing state laws, but what we actually did not work on is what should a model state law be on data release today. Because what we also find is that state laws may be 20 or 30 years old and at some point maybe there was good reason for them and maybe there is still good reason for them but we actually cannot point to a standard to say this is really what you should be doing given all of the things that we've just talked about this morning. So I think there really is an opportunity there to help educate the states and say here's a really good way of doing it and here's how if you're concerned about HIV data release and other things here's either a compilation of what other states do or here are the pros and cons, and perhaps this committee or a subset could actually take that leadership role.
DR. ROTHWELL: Agreed. In fact as I was mentioning about publications, even data files, some of the states really release information that they shouldn't, in my opinion, shouldn't be releasing. They're allowed to by their state law but their state law probably is too loose, way too loose, and Steve was talking about open record states and not, it's probably not in the best interest of their citizens in what there are and we're not providing that leadership to say you know, these are the things that could be happening under this type of arrangement that you have.
DR. O'NEILL: Just one clarification, does this mean that the center can no longer public tables of mortality rates by state? Or you're only talking about public use --
DR. ROTHWELL: Our publications remain the same, so the specificity that we do now, we have tables within tables within tables within tables, Stephanie back there has some of the most detailed tables you could ever want to get lost in and they will not change for this reason, they may change for other reasons because we're not getting comparable data on natality but they won't change because of the confidentiality. So we are not precluded from doing anything that we weren't formerly doing in our publications, however of course our publications are controlled by issues of data release for ourselves so there are rules of what we can and cannot show in our tables. So those are still restrictions on us and they should be on us.
DR. SONDIK: The distinction there is that the data are aggregate.
MR. ROTHWELL: Yes, we don't allow cell counts of onsies and twosies and things --
DR. SONDIK: Right, but I think that's the critical difference, and I think that actually in part is a partial answer to the question about impact on health from sort of the overall population health point of view than looking at aggregate data, given that we can get it by geography, I don't see an impact per se. But on the other hand there's another aspect of health which is the public health action side if you will where you do want individual information and it does have or could have an impact there. But that's one in which then this joint activity if you will between the states and the federal government is crucial to perhaps look at specific situations, inform the states, make certain types of comparisons or whatever, but the marriage here between the states and the federal government I think is very important because it's important to the states, even New York City, to be able to look, to make comparisons between itself, and sometimes on a very detailed basis, and others.
MR. J. SCANLON: I think this is part of a bigger development in the U.S. and in other countries relating to privacy and confidentiality in health records and public health records, but I did want to make an observation that in the HIPAA, and I'm reluctant to bring this up but there is a similar formulation of what would probably be parallel to a public use dataset, it's a covered entity, a hospital, a public health department, could release information, could be hospital discharge data, whatever, in a de-identified manner and there's a list of what exactly constitutes de-identified. Similarly there's something called a limited dataset which is kind of like your second where specific dates, specific diagnoses, and more detail could be authorized but there has to be a data use agreement as well.
And then there is another procedure which NCHS uses all the time where a statistical review by a statistical expert of the output, or what's contained in those unit records, is sufficiently confidential and protected though apparently that's not used all that much in HIPAA from what we can learn. And then there's an actual request to get identifiable information pursuant to some other reviews. So this is not just vital statistics, this is what the world is doing and I think it's a balancing of confidentiality with data.
DR. ROTHWELL: Two things on that is that I agree that there is a balancing act and with Steve's suggestion that balancing act will still go on, maybe the balance will be better but we'll still have to marry these two competing interests. The other though is that remember, I hate to keep agreeing with Steve but there is no consent by the person providing this information so I think the state registrar is always very concerned that at some point in time this will be contested within their state and why are you collecting this information, I don't want to provide this information, then we could be in trouble.
DR. COHN: I want to break in for a second because I know we can go for the next hour and 20 minutes just on this topic, and then we will not have even talked about the second piece which does fit in as a piece of all of this.
Now part of my role as chair is to make sure that people get to eat lunch and so I'm going to suggest even though I don't think we necessarily have completed this conversation, it is 12:40, I'm going to suggest why don't we take a 15 minute break, go up and grab some lunch, bring it down, and we talked about a working lunch and then we can sort of figure out whether we continue on this or move into the next topic and then sort of bring it all together. So if everybody is okay why don't we take a 15 minute break.
DR. COHN: I do want to apologize but obviously this is meant to be a working lunch, I think June should be here momentarily but in the interest of time knowing that we were already planning on finishing up by 1:45 or so, I think we probably better get going on the second topic and then begin to sort of hopefully have sort of joint conversation about both pieces.
DR. ROTHWELL: We're going to, we don't need slides I don't think, I'm going to be talking about, and you have I think a handout, the title of this talk is Electronic Death Registration, Re-engineering State and Federal Systems. Let me briefly talk about the state of, or how vital statistics are collected and most specifically mortality data and why it's somewhat different than information on birth certificates and what that has to do with issues of data provision in electronic systems.
For the most part in states there are two people, two organizations or folks responsible for the provision of mortality data, one is the funeral director and the other is the certifying physician, medical examiner or coroner based on what type event it might be. And I'm glossing over a lot of things but basically the funeral director is responsible for the demographic portion if you will of the mortality, of the death record, and the physician is responsible for the cause of death information and related information to that event of a medical nature. And these two pieces of information are collected and put together and then provided to us and that's what we create the mortality files that analysts use.
A part of the problem you face forgetting about data issues is that many events take a long time to resolve, especially if they're medical examiner events, things of that nature which take a while for them to determine what the actual cause of death is. And then the other complicating factor is is that you for the medical portion of the information that's provided one has to then put that in some sort of form that it can be analyzed, that is we use, unlike everything else in the United States we do use ICD-10 and have I might say for many, many years, successfully, and we're glad we're there. Other then that we have to put that nomenclature that the physicians provides in ICD format if you will, in codes, and then we have to select automatically the underlying cause of death because many times the physician isn't sure what we mean by underlying cause of death, they may think, they mix up sometimes the immediate with the underlying cause, and so we have software that actually does that for us and I'll get into that a little bit later on and what some of the good things about that and what some of the bad things are.
But although on births we have automation, almost complete automation, it may not be what every state wants, in hospitals, that's not the case with the collection of mortality data. Mortality data has always been late in automation, for the most part traditionally only automation that took place on mortality data was when the actual certificates came to the vital records, state vital records office. And at that point they did something with the records and before then they may not have done much with them and they were actually sent to us in microfilm, and then we did the data entry and coding and that type of thing. Well, we're a long ways from there but we're not nearly as far as we should be.
For the most part still states are not automated at the data source and we several years ago the states and us and SSA went into a process of what we call what we would do, what we would like our systems to be in vital registration, and this wasn't just for statistics but how would a vital registration office operate and what do they need in order to operate and finally obviously what data would come out of it. And this was not just for deaths but it was for births and all vital records and back end processing and that type of thing.
And from that we came up with what we thought were good functional requirements for what such registration systems should be and we came up with a consensus on what the data standards should be and what the edit requirements should be, and it was I think up to a point quite successful.
Now unrelated to this but sort of related to it was that some of you may be familiar that the president, one of the first things that when he came on board in the last, his first Administration, was to look at areas where we could have automation improvement throughout government and they came up with e-government activities which have been in some cases successful and some cases controversial. But be that as it may surprisingly one of them that was selected was vital statistics, it was called e-vital, and specifically what it does, one of the issues was is that Social Security Administration wanted information provided to them much more currently so that they could, and accurately, so that they could take those who have died off their roles and so they wouldn't be providing inappropriate benefits. And what better way to make that happen then to really jump start the whole electronic death registration process.
And so SSA for the last, I don't know, Steve, what, four years, five years, has been funding states, four or five states a year to automate the EDR process and using these guidelines that we've developed as guidelines for what those systems should be on the mortality end, with hoping that this will improve the speed of information that would be available to SSA. Well, one would then hope that that information would be then also available quicker to NCHS.
Well, primarily though Social Security is not all that interested in the detailed demographic information that we're interested in, they do need some, but they do need to make sure that the death took place and it took place to the person that's on their roles. And so what they need to make sure is that Steve isn't giving them the death of somebody isn't really on their roles, that they be concerned about, or they're matching up inappropriately, but beyond that they certainly don't need the cause of death information.
Because that part of the information is quicker to provide states I think have been fairly successful in getting on the EDR and meeting SSA's requirements. So has that helped NCHS out? No. Is it because states don't want to provide us this information? No. What happens when we get our data is that we get two streams of information, Charlie dies, his record is made out, and what we find out first about Charlie is his demographics, we find out what state he died in, his age, his race, his ethnicity, all those types of things. And then at some later time we will get records in that will have just the cause of death information and one of those records will be matched up to Charlie, and so we will link those two together and then we will do some edits and if they pass then we have now Charlie's complete record.
Well because we've really never done much with just demographic information there's really little sense in us pushing Steve to provide his demographic information to us quicker when we're going to wait around for three months or four months or six months or whatever it might be before we get his cause of death information. But it does have potential and I'll get to this at the end.
Now what I've been trying to do and others is trying to say that vital statistics used to be public health's primary, and matter of fact only data surveillance tool, and what's happened is because of the slowness in reporting it has become a measurement of what happened to us two years ago, which says that it's not important but it certainly doesn't help you in any emerging issues that are taking place.
And so what would we need in order to make this happen? Well certainly if in fact we could get EDRs to operate quicker and more robustly in states then we might come back to having a true surveillance system out of vitals, and one that's not just in selected cities but is complete reporting for the nation.
And so we've recently received funding from, money from pandemic flu dollars that are in CDC to start implementing EDRs, in other words to supplement what Social Security was doing, to fund other states to do EDRs, and then we hope in phase two will be to fund some of the existing states who have developed, have pushed the demographic end and start automating the other portion of the mortality system and being able to provide the medical cause of information much more quickly so we're not talking about months and months and months between the demographics and the medical, but we're talking about days between the two. And we're talking about maybe days between some events actually being reported to us. This would be a huge change for states and for us.
But maybe NCHS has been wrong all the time when SSA was doing the EDRs and maybe we should have been pushing states to provide us the demographic information on a more current basis. Now why do I say that? Well, from a surveillance perspective if we could provide information to public health analysts elsewhere in CDC or NIH who would be interested in the demographics of events, that is the number of events that are taking place to certain age group of people, and then since we already know what should be expected in those geographic areas we could be doing some modeling there and then provide them with what would seem to be a set of unusual conditions taking place in certain areas of the country. So it's very possible that we could by just speeding up the process of providing demographic information to us and then utilizing that information in a smarter way ourselves we could as a first step improve the utility of mortality data as a surveillance tool. And then as we speed up the cause of death information to us really then maybe foregoing the modeling and being able to actually show what's happening out there last week or year to date.
We have a long ways to go on this but I do think it's possible, I think it's possible before I retire and so I hope I don't have to work until I'm 80, but I really think this is possible and we need to start now, fortunately we have some dollars to do it, we also are going to have regulations in the next year that are going to require states to provide information quicker to organizations in their state and outside for security reasons and part of that will require faster matching of birth and death records, which will mean that they'll have to have automation more readily at the state level, at the local level, and so I think there's a confluence of events here that could really energize this.
There are a whole lot of howevers in this, one is that the medical coding systems I was telling you about, primarily they're located in two places, they're located, for those states who don't do that type of work they're located at NCHS, the literals are provided to us and we put that data through our medical coding systems and that gives us the ICDs, not just the underlying but all the multiple cause of death information. For states who accept the software they do something similar at their end and provide us this information. The problem is is our software isn't where it should be, even though we've had great success, we provide the software to a variety of other countries, it only handles about 85 percent of our records, 88 percent of our records. And the 12 percent or 15 percent of the records that it doesn't handle are the tough ones and they're ones of some public health consequence. So we really need to be able to improve the throughput of these systems in order to be able to really turn this data around quickly, that's one issue.
A second issue is that the data have to be put together very quickly because one of the major edit problems that you have is that you don't know whether a cause of death information is incorrect until you match it up with the demographics and then all of a sudden you have gender specific mortality that doesn't look right, you have age specific mortality that doesn't look right, and it's not to say that it isn't right but you can't run those edits until you have that data file together. So we have to close down the timing of that so that that edit can be run very quickly to the time, to the event itself. And that means that where is that going to take place and this is one of the contentions that we'll have to deal with is how is the physician and their staff going to deal with this, how are we going to deal with it with them, by we I mean not NCHS but NCHS and our state counterparts, how are we going to set this up such that we are not getting in their way, we're actually helping them complete this record and maybe completing it in a more careful and thoughtful manner.
So I think there's going to be a great potential long term on how, what is the appropriate interface to have with physicians. States that have started this work, and there are several states that have, have usually started with those physicians that they have some control over, and that is their medical examiners and folks of that nature. But it's going to be a very difficult process to put in place for states and not actually exacerbate some of the problems states are currently faced with.
But let's just say that I'm correct and that we're going to be successful with this, and that we do have finally EDRs in place and that the federal government will have the data within several days of the event, within a week of the event, and they'll have the information at the same time the state health department has the information. Now I'm talking about a complete record at this point, how do we release this information? I'm getting back to my original presentation, we're no longer talking about an annual file folks, we're not talking about waiting until it's good, until the wine is just right and then letting it out.
What we're talking about potentially is providing a file that's got problems with it and then gets better over time, and then finally at some point in time we'll actually make a historical file out of this, what we now call our public use file and says we bless this for a research perspective. But between that time we're really talking about a file that can be used by both state health departments and federal agencies to make public health decisions and/or interventions. This means that, I think it's going to put potential strains between what's happening, whether it's in CDC or some other organization, and a state health department, since they're looking at the data almost at the same time, and when maybe a federal agency might have more staff to look at certain information then a state agency. So how is that going to take place so that we can work well together?
The other is is that how do we have a data release program such that will even allow this to take place? And finally, and this is extremely parochial but I'll bring it up, is that if in fact we provide data on a year to date basis and it gets better and better and more complete then how do I know that somebody decide to publish the U.S. mortality data for TB, and somebody else won't publish the U.S. mortality data for TB in another place but they'll decide to use an earlier file to beat them. Then all of a sudden what we have is what do we believe, what's really out there. So somehow when we do this we're going to have to figure out a way that, I don't want to use the word gold standard but what is it that we're going to agree to is the official final file that will provide issues of standing because, by the way there are federal grants that are tied to where one stands in certain measures, well, if you can gain that by saying you're the worst or the best or whatever it is based on when you get into this file then we've got a problem.
So I think there's some real challenges ahead for us but I think to me that's not the reason not to do it, it's every reason to do it. And I want to have those problems and I think this combined two committees could be extremely helpful in trying to figure out how best to handle this so that we can again protect the states' interests in this and the individuals who put their information into it without consent, but make vital statistics not just something to document us from a historical perspective but again as a surveillance tool.
DR. COHN: Let me just ask a question of clarification, and I guess I was surprised given our before lunch, and of course before lunch and after lunch are two different conversations, but you obviously have painted a rosy picture of access and ability to work with this new world of electronic death certificates and all of that, didn't all the pre-lunch conversation impact that rosy vision or am I confused?
DR. ROTHWELL: Well I'm saying that yes, I think when we contract, when we speed up this information we're going to have to have a new data use agreement if you will on how this information would be used and when would it be appropriately used. I think the use I'm talking about is very different than what a researcher would possibly need, the benefits to the researcher will be in the end if, if we can do a year to date file and then we're extremely current my guess is that the final file will be extremely current as well, maybe three months or four months after the calendar year instead of two years after the calendar year.
But I do think there is going to have to be some sort of understanding of how we use this preliminary information, which if you remember I said that we never release preliminary information form, excuse me, we released it in publication form, there was never a data file provided. What I'm getting at is that we maybe then once we're more current there's going to be more demands on us to provide the data files to people on a year to date basis and if we don't have certain non-natural events in there because of coroner events are not adequately covered or maybe the program or the people aren't really interested in those events, that type of thing.
So how would we release that and what would we call it? And when we do get the more current record on Charlie in and we update that record how do we know that somebody hasn't been using that, that was a pivotal record, so how do we let them know that there have been significant changes or do we have to just leave that up to them or do we have some sort of automated system that would allow them to do very quick freaks(?) on certain variables to see that there have been changes.
I don't know if I got to your point --
DR. COHN: I think the point I was making is that you're, I guess just make sure that I understand, you're getting very excited about having interim files that are available earlier that have no geographic detail or exact dates but they'll be coming out on sort of an ongoing basis.
DR. ROTHWELL: If you notice the data release policy says for federal use, I can provide information to federal agencies with geographic specificity and with time and exact dates. But what it says, that's for a years file, that's for the 2006 data file, doesn't say anything about any type of interim thing and what we would do and I think if I was a state I would be very concerned about what our data release policy would be on a partial, on something partial within its registration system and in all other states, so how do we do that. And if we say that, and as, once you create something like this and we said well this is only for official public health surveillance uses, once the data is there people are going to say why can't we have access to it. Well, I think we have to figure out how they can have access to it under what conditions instead of just saying no. And I think that's going to take somebody wiser than me to figure that out.
DR. O'NEILL: It isn't unprecedented, obviously data like the GDP have preliminary releases that frequently differ widely from what the files are, they go through several iterations and it isn't always a good idea for people to see the preliminary but they learn how to adjust, I think it depends really on for one thing how much it would actually change, how rough would those preliminaries really be, and the other one is how important is it for people to see this earlier then they otherwise might. With the GDP it obviously has significance for all kinds of things --
DR. ROTHWELL: June, I think you're right on, I think if the research community knew that they could have the final file within a very short time after the close the pressure would be off. But if we were going to take another year to clean the file, if I was a researcher I'd say give me the, come on, I don't care about that last two percent, give me what you got.
DR. RYAN: A couple of comments, I think this sounds like potentially a really interesting and exciting initiative and I guess I had a few reactions and questions. One is that the fact that you're probably getting the overall death, just death yes or no pretty accurately is something that you can probably leverage quite a lot. So I think as statisticians we're used to modeling so the idea of trying to come up with some clever models that can help you to get fairly accurate real time estimates even though they're not based on final cause of data is very appealing. I'm sure there's ways that particularly after you build up some experience with this you can start to come out with some fairly decent prediction models I would think.
And the other thought that I had, and this goes back to the meeting we had in May where we got the review of the death reporting, waiting just because you've got all the cause of death doesn't mean that it's right, I mean there's a lot of problems with the cause of death as well. So one thing that I was wondering as you were going through this is there any mandate for you to actually base the cause of death reporting on actual counts or could you sort of come out with a proactive scheme where you'd say okay, we've got the total death counts and then instead of just waiting for all of the cause of determinations to come in you proactively identify a subset and go in and pull resources into getting a subset characterized very well and come out with more of a statistical estimate of the core specific death rates but you'd be, instead of having all your resources spread over all of these different events and getting probably not terribly accurate data you pile your resources onto a subset of deaths and put resources into trying to improve the accuracy there. And I was wondering if that's something you can do or are you somehow mandated to actually count the different types of death?
DR. ROTHWELL: We're not mandated, that could be done, and I'm not going to try to be negative about this, it would give you more, potentially better information on a smaller group of people that you could then make statements about, like any sampling, about the whole. The problem would be I think is that it would mean that NCHS would have to have more control over the actual data collection for those records than currently exists and it would be somewhat of a federalization in a way of the vital registration system and so I think that would be a difficult part of it.
Another potential negative, and this is not just on what you're saying but on the first question on the demographics, yes, we can model what we expect, the issue is is what you don't expect in emerging diseases and so let's say if we had something new in place like AIDS, I think that we would see that there's something, we would be modeling it inappropriately at first, very inappropriately, and probably the only way we would pick it up was to be strictly on the demographic end saying why are these young men dying at this point in time. So I think from a health perspective you sort of have to do both.
The other is is that there's a great pressure to have comparable information at the local, state, and federal level and one of the biggest negatives of our surveys, and I'm not, whether it's the National Survey of Family Growth which we have some control over and then other NCHS surveys is that you can't say anything about the states, and on vitals they really want to know what's happening in their community. So that would be the negative, I do think though that what we really need is follow-back capabilities on mortality data, we need to know what's going on the last year of the life, there are a variety of issues that could be brought up and that could be done through a survey mechanism, I think we need that desperately. And we could pick out certain specific causes that are troubling to us and do follow-backs on it --
DR. RYAN: And then you could have a nice calibration --
DR. ROTHWELL: Absolutely, absolutely.
DR. STEUERLE: This probably is not a fair question to ask you so I don't know whether we could even refer to our chairs too but I sort of like that question taking this great example of what this means for our two committees which seems to be the ultimate purpose of this meeting, what can our two committees do and what is each's relative advantage in dealing with this type of issue? And I can give a couple examples, I don't really care whether the examples are right, I'm actually thinking of the workshop we have set up next Monday and Tuesday where I think we probably, I don't know whether mistakenly or whatever, we're actually having discussions on linking datasets and I don't even think we've got anybody coming on vital, we have NCHS, I don't know whether he or she will get into this or not. But I can think, as you say my mind is immediately clicking not on just examples you give for early detection and other systems but linking datasets, for instance obviously we could link the vital health statistics with Medicare data, there's probably all sorts of interesting studies we could do about the effectiveness of various types of procedures, cost per state, we could even, who knows, MedPak(?) might be interested in figuring out whether they're allocating monies well, I could even think about somebody thinking about measuring quality of hospitals, boy if I could link this data up with some records from hospitals, and it might be internal to the government, it might be some outside researchers, so you could start thinking of all sorts of linkages that would be very useful.
Now let's suppose we hit an impasse for a variety of reasons, what ages internally do you try to do proactively to get around them, for instance are there ways internally to say okay if I can't get the data as an outside researcher, if I have flexibility in my budget I could beef up an internal component and unit that could hire ten people from outside if they have the right proposal, this is sort of a way some statistical agencies get around the confidentiality issue.
And then back to the issue of our committees, what could our committees do, are there certain issues where we should be perhaps even holding hearings so we give a little more, we're not political in a strong sense but in the weak sense we can hold the hearings to have people speak out to say hey, if this would happen we could improve the following with respect to health. So I realize that's a very broad question I'm asking you but I'd really like to think about using your example, what can we do, what should we be doing to advance this agenda as opposed to just knowing about the problem.
DR. ROTHWELL: Well number one I think is you all are involved in the electronic health record activities, folks what we're talking about is the bookends to this and we need to make sure that they're connected. Right now even though vital records is some of the oldest systems within hospitals they are foreign systems within hospitals. They cannot be that anymore, we need to have systems in the long term, and this will be after I retire probably, but that the vital event causes us to suck that electronic health record information into it. In other words it's not doing the initial collection, it's pulling it from those electronic health records. Well it can't do that if it's not in a standard form that would allow it to do that. So I think when we talk about electronic health records don't forget the bookends, you need to make sure that we don't go our own way.
Number two, and this I think gets to your first question that I passed on, your first question was well the quality of this stuff, if we have an automated death registration system than what do we provide the physician when he or staff are completing this record, how much help do we want to provide them, and will that help actually be a hindrance. So I think there has to be some sort of view of what would be an appropriate interface with the physician community that's completing this information and how much do they want there and how little do they want.
Agenda Item: Next Steps - Dr. Cohn and Dr. O'Neill
DR. COHN: And actually I want to jump in for a second because I actually think that there's many more sort of obvious things that we need to be talking about, I mean I think what you're describing is all fine, I am well aware that we're beginning to run out of runway in terms of our timing and I guess I'm, as I'm thinking about what I'm hearing and knowing that the board just like the NCVHS, we're all sort of issues oriented and as much as we are into good works I mean I'm looking at barriers that get in the way of some of the things that we've been talking about happening and really it's our responsibility to sort of evaluate that and see if we can come up with recommendations to the Secretary and others to help, and I think that's our frame, I think you have the same frame except that you're primarily advising NCHS.
But as I listen to all of this I'm sort of struck with the issues that were discussed during the first part of the session as being really critical barriers to things moving forward and I thought Steve and you also brought up some important issues around geez, in all of this privacy policies are going to derail almost any vision that you might have in terms of usability of data. Now I know that Populations is going to be meeting, I also know that there's happening federally sponsored by ONC efforts to examine state privacy and security laws, and I think one of the things that the NCVHS needs to do, either at its next full committee meeting, and we can tell Populations whether we should even be doing it before, is to talk to that activity to find out whether this is in their scope of activity.
Because I think you've all identified some geez, if we could have some best practices a lot of this would work better. And so A, we need to find out from them is this in their scope of activity, if it isn't we need to strongly suggest that it be put in their scope of activity and even if it's in their scope of activity but the very last thing maybe we need to be recommending that it be brought forward as a higher level because this is a very substantial barrier. And so I'm looking at Don to at least begin knowing that they have hearings next week to begin to talk about that, I think Marjorie and I will talk to the people working on the, in ONC on the privacy and security area.
And I would imagine that, I mean one could imagine that as by early as November and it may be towards the end of the year that we might be able to produce a letter that begins to lay out the issues and lays out some suggestions, once again for increased prioritization and increased focus, not identifying that New York City or District of Columbia or Connecticut State has the best practice but hopefully recommending that we put into motion a process I think Steve as you suggested that there be some identification of best practices and some focus to see if we can get that more nationally implemented.
I would I guess imagine that if the NCVHS came up with a letter like that maybe this is something that the board would like to take under consideration also and be co-signatories to a letter like this to the Secretary. And I raise that, obviously you'd have to see it, you'd have to consider it, but I mean this is obviously I think a very pertinent issue, one that I think deserves some resolution, not some resolution but moving the ball forward on all of this stuff and I think this is maybe a different view of collaboration but one that seems to present itself very appropriately in front of us.
Now there may be other things that we need to do and once again I'm being very specific because I think we could easily finish up this meeting smiling and shaking hands and not have a clue what we did for the last three hours other then getting in some learnings. And if you think I'm all off I'd like to hear about it, if there's other things that we're missing let's talk about it but at least that's one main piece that we can do that's very concrete.
DR. ELO: I would endorse what you suggested and I was thinking what would be another sort of concrete thing that could come out of this and it's sort of what Bill and I were talking a little bit at lunch and I guess it feeds into your hearings on Monday as well is that I think we need to take another look at these data user agreements and what's the best way to put them together into terms for the greatest benefit for the population health, these restrictions, okay they were negotiated by NCHS and you but this issue is going to come up with all the data linkages.
And I think it would make sense to do some brainstorming under what circumstances we can do data releases on a restricted basis that could provide some opportunities to see local areas statistical analysis that cannot be done without geographic information being released to the researchers and I think that would be good to move it up, sort of kick it upstairs so to speak, and get it out of where the data producers are and maybe come up with the same kinds of recommendations that could be then worked out with the other agencies and the states where we would potentially have more flexibility and not be tied by what's already being done. I think we should think about it in creative ways and I think this is an issue that's going to come up a lot in your hearings because all these agencies are going to have various requirements and I think we need to be creatively thinking about it.
DR. SONDIK: There's another topic that I also think fits into this that Charlie was getting at and that has to do with electronic health records and the relationship between that and the records that we're talking about here. You look at the AHIC, the Secretary's advisory committee the American Health Information Community, it's very much focused, there's four subcommittees and three of the four are very much focused on electronic health records, in doctor's offices, in hospitals, whatever. There's another committee, the biosurveillance committee, that is focused more on what kind of information should the country be collecting and they're focused at getting information on a minimum dataset but what they're not looking at is where that information is really going to come from. They view it implicitly as coming from these electronic health records but the vital statistics system really is not in their sight in this.
And I think it's very important, personally I feel it's very important that we consider as part of this overall electronic health record activity one that includes vital statistics as an allied and in part integral aspect of that because we get such crucial information from it. Charlie mentioned that some of the funding that will take us part of the way toward the EDR system, electronic death registration system, is from the pandemic flu money and why, well it's because it's for all of those reasons that just asked about the immediacy, the need to get information in a sense online.
And it to me has all of those implications that Louise mentioned of going back relatively immediately being able to do the in depth look that one needs to do, but that linkage of the electronic, of the vital statistics system with the electronic health records in general is something that I think is very important and the AHIC I think is being very effective, to have this on their radar screen as an activity could really be a plus.
DR. COHN: Well sure and I think you could certainly suggest that to AHIC. I actually was also going to comment that if you remember a number of years ago we came up with a document to the, on the 21st Century Vision for Health Care Statistics, but I know Don had been talking about I think bringing that up and reviewing it hopefully next year and I think to my view what you're describing also was sort of, I mean I think it was actually implicit in that vision if I'm not mistaken in terms of really connecting electronic health records with vital and health statistics. So I think they're very appropriate in terms of playing that out, Don, did you want to comment?
DR. STEINWACHS: I think what we've been talking about is it's been about five years since the Vision for the Health Statistics in the 21st Century came out and the conversations we've had on the Populations Subcommittee, one was at least in my mind you'd like to measure progress toward that, giving that framework, and hopefully we can point to some things that are going on but at least be able to share with the Secretary where we are. The other is that things are changing and so the opportunities that EHRs may represent as well as the concerns that may arise too, that there are things that need to be changed in that vision. And the third was really trying to use that vision and updating it as a continuing test of when you look down at specific applications and opportunity areas what specific things should we be trying to tackle now that take another big step toward that vision.
And I think just some of the things you're talking about here, that linkage between health care records and vital statistics which is non-existent as far as I know seems to me begins to talk to that as well as the other issues out there very much. But we saw the data linkages issue as part of an effort to try and say well here's one of those steps toward trying to achieve part of that vision which really says you've got to put all of these pieces of relevant information together somehow if you're going to understand all the forces that interact on people's health and interact over time.
DR. SONDIK: The reason I brought up the AHIC is that while, I think there was a presentation I think at the meeting before last on NHIN and this relates to that. But I think it's important that they see this linkage, this potential linkage, and it's something that hasn't naturally come up before, and with this committee's role in advising the Secretary it seems to me this is another possible avenue to raise that.
DR. COHN: Absolutely and I think obviously this is, I mean at the end of the day what's important is that the Secretary be informed of I think what are important national priorities, which I think you've obviously brought forward I think very convincingly.
Now I guess the question I'd ask, are there other things that we should be all working on, Paul?
DR. TANG: Well, if I were to use the metaphor that Charlie, which is the bookends, I mean it starts with getting the right data that you need defined they way that you need it, either it's birth or death, and cause of death instead of you sort of figuring it out based on our chicken scratch. But we can help capture it correctly the first time in a codified way so that might be going through the Population Subcommittee to figure out what it is and its definition and move it to the Standards Committee to codify it, that's getting the right data electronically, efficiently, and then submitting it on to you in real time.
The second piece was staging of the analysis and the problem of preliminary data, that's pretty much your problem I think, I mean that is how to handle that, manage that problem.
The third one which is how you began which is getting it out, getting it used, and protecting the safety of its use, and that I think comes back again to our Privacy Subcommittee and we certainly have not been that bashful in saying one proposal is what Steve said which is let's have model ways of permission of use. The other way and it's complementary and you may need probably both is trust with verify is to get back in and protect it uniformly, what we don't have is uniform protection, we have to struggle with data use agreements and they're not enforceable and mean anything. We've got to make anyone who has access to this accountable and responsible and that's something we've sort of talk about in the Privacy Committee but this is just yet another reason for doing that.
It's also a good example of the positive benefits of secondary use so again we may want to grade secondary use, we have things that are good that can be inhibited because we don't have adequate uniform protection and we have bad things, potentially bad things that we really need uniform protection to prevent from happening, and that impedes your work. So I see those as sort of the bookends that fit the two ends at least, that fit our charge in looking at our subcommittee structure very well as long as we sort of put it on the docket.
DR. COHN: Other comments? Board of Scientific Counselors?
DR. O'NEILL: Well, another issue that is the center's role and it isn't theirs I assume alone in bringing the states on board because the vital is really different in obvious ways because other data is collected by the centers, that's all the centers' own, but the vitals are highly dependent on the states and as Steve pointed out some combination of state law or state recalcitrance or whatever leads some states to be providing much less, though why they are not the model state, it's an aspect of the same thing but it does come from the fact that states are marching sometimes to other drummers. But there must be some way where some leadership could be exerted, the model state would be one way but just directly examining the kinds of laws with them or getting them to present what it is that's impeding them from providing data that we would like them to provide in the way that we would like them to provide it. But somebody, and I don't know whether the center alone has the authority really to engage the states in this debate, it is their role ostensibly but they may not have that authority.
DR. ROTHWELL: We have published what we call the model, model statistics laws, and those are used as advisory for state legislative purposes. That hasn't been updated in some time so there is a mechanism in place that would allow that to take place, I think it would be great if that could be done in a broader context than just NCHS and the states, if we could work out a way that that could be done. But yes, we need that from a data release perspective and a variety of other areas to really re-look at what these model laws should be.
DR. O'NEILL: But is that sufficient to be able to persuade states to do what they're not doing?
DR. ROTHWELL: That's why I'm saying if it was broader than NCHS just publishing something and it's just another thing we're doing, if it had a broader imprimatur it might be effective, I don't know. Steve, what do you think? Hate the idea?
DR. SCHWARTZ: Model state vital statistics act and regulations really are mostly focused on registration issues so I don't know that there ever was a national effort looking at data release policy nationally and it's an opportunity, and I think there's, it's even hard for states --
DR. SONDIK: Let me raise another dimension real quick, one of the things we haven't talked about today is the cost of all of this and NCHS does pay the states, NCHS pays the states a fraction, actually quite a small fraction, of what it costs to actually do all of this. I don't know where to put it on the agenda but I really it's a very important, it's very important in terms of the overall support that the federal and state and local governments are giving to this overall effort, meaning the vital statistics, when you consider how important it is as a foundation for what it is we know about health status, what it is we know about people getting a good start in life and what's causing them to leave life.
And it has struck me for a long time, and this wasn't our topic for today but it has struck me for a long time that we really should take a hard look at the support that all of this is being given and are we doing the right thing particularly given the new technology that's coming in, the importance of doing the kinds of analyses that were mentioned before, importance of quality control and all of this, the importance now in terms of the more immediate need for this information and the linkage with the other data sources, when we consider terrorism and other events. We certainly saw in Katrina that we needed more information more rapidly than we actually had, all of that links together.
So I think it's something that we may want to put on a semi back burner if you will or think about this because I think it's something that involves both of these committees and I think it is a question as to whether the resources are really adequate, are they adequate and directed in the right direction.
DR. COHN: Sure, and without trying to answer that because we are, I think you bring up a very good point, I guess I am hoping that Don, who's I think going to talk next, is going to be considering that as they look at the vision because obviously funding the vision is --
DR. STEINWACHS: I always look to my leader, Simon, to know what the agenda should be, thank you, Simon.
DR. COHN: You also had your hand raised to make a comment.
DR. STEINWACHS: I was just going to build on I think Steve's positive suggestion about the nature of the opportunity to look at I guess model laws in this area and I thought Charlie you built one thing into this when you talked about surveillance and if you think about what enabling laws would probably have to be in states if you were to try an transform, which I think there'd be a lot of interest in, transform the vital statistics system in also a tool for surveillance at the same time, it probably is a tool for surveillance to varying degrees at the state level and city level, less so at the national I would guess is really what you're describing so that investment and that flexibility if it is flexibility that's needed, but that might be another driving rationale for why do it now and why think of it in a little bit different context, and maybe even raises at a more interesting kind of issue are there other data systems and data sources that are part of NCHS that fit into a potential surveillance mode because you're continuously in the field on a number of things but it's usually different sampling units, different places and so on, but can represent in a way as sort of both an opportunity and may also be an opportunity for resources is the reason you made me think about that.
DR. COHN: Now I think we could obviously spend a fairly longer period obviously discussing, obviously many more hours discussing these topics, I am however aware A, that we're half an hour beyond the timeframe that we had agreed to devote to all of this, I know that Privacy and Confidentiality has hearings that start in 15 minutes and I know you all have a busy agenda too.
Now it seems to me that we've come up, I mean obviously there's lots of things we could talk about but in terms of concrete next steps I'm hearing one very, as I started this issue of a letter, formal further investigation which the NCVHS can do and a letter specifically related to these issues of I think best practices, model legislation, etc., it sounds to me like there does need to be a little more research done on that, you had mentioned that there is model legislation and it doesn't appear to cover really these areas. And once again it may be an opportunity given all of the other things that are going on, I think, Don, you're going to be doing more work around looking at the vision and hopefully much of that could be shared with the board as we begin to sort of work on it further.
I'm convinced that I think information sharing and discussion, it's not so much information sharing but discussion of overlapping issues is an important thing that we ought to be doing from time to time, I do know that it's on top of everything everybody else has going so I think we should try to be parsimonious and obviously not do this quarterly but we probably need to be doing it on a regular basis.
DR. O'NEILL: Actually we thank you for inviting us, I think it's stimulating for us to have, to hear from a broader array, our people are considering many of the same issues.
DR. COHN: Well with that, as I said I think we ought to adjourn the meeting, obviously from the NCVHS I really want to thank the board for joining us and you'll be seeing hopefully as the year progresses some letters for your consideration, at least one letter, and you can decide whether it's something you also want to act on and add your signatures to.
DR. SONDIK: I want to thank both organizations.
MS. GREENBERG: I was just going to suggest that maybe after we've had time to digest some of these suggestions and done a little research, etc., we might convene the group by conference call that organized this joint session with maybe a few additional people and sort of talk about some next steps as well because I know we just, as Simon said we don't really have any more time now, and anyone else who would like to participate in such a conference call just let your, on the board let Irma know and on the NCVHS, let Bill know, we'll do that maybe in November or something.
DR. COHN: The meeting is adjourned.
[Whereupon at 2:17 p.m. the meeting was adjourned.]