[This Transcript is Unedited]
THE NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
Workgroup on Quality
June 20, 2007
National Institutes of Health
Natcher Center
Bethesda, Maryland
Proceedings by:
CASET Associates, Ltd.
10201 Lee Highway, Suite 180
Fairfax, Virginia 22030
P R O C E E D I N G S (5:12 p.m.)
DR. CARR: I would like to welcome everybody to the Quality Work Group meeting. I’d like to start with introductions.
(Introductions.)
DR. CARR: I want to start off by thanking everyone for the great participation in the hearing yesterday. A special thanks to Cynthia and Mary Beth who did such a great job of pulling it together.
(Applause.)
DR. CARR: The lineup of speakers – we really found them to be informative, articulate, and really helped very much.
So our agenda today has two parts. The first part is to follow up on the hearing yesterday and to think about the themes that will help direct how we pull this together and where we want to go with this. I had also included a review of the May ’04 report – anyway, an earlier report to think about how we think them going forward. Today is the day of unbelievably ambitious agendas, so if we don’t get to the second part and get straight on the first part I think we will have accomplished a lot.
I’d like to open it up to just ask around the room for folks to say what they felt were the themes – the story that came out of the hearing yesterday. As I think as you recall, we began by asking our speakers to address what is happening today in this hybrid world beyond administrative and not yet fully electronic. What is happening, what is working, what is not working?
Out of that I think what we would like to do is put together a summary of that and think in terms of a letter. Also think about next steps, next groups, next hearings. I will open it up to the group.
DR. BICKFORD: I will try and be brief and then let other people just chime in very quickly. One take away for me was the power of administrative data. Granted we were looking at an in-patient setting, and I think even the definition of administrative data begs an operational definition. I think it is broader than some people may think it may be. There is a tremendous amount of power and I think it was Anne’s presentation, if I recall, that illustrated that just so eloquently. Not only that but just the relevant contribution versus costs – which I just think is a stunning result that shows a pathway to certain things. I think both the method was very clear, I think the findings were very sharp. That is one.
DR. CARR: Just to summarize because Garland was not there, but Anne Elixhauser and Rich Johannes presented a very eloquently data work that has been done looking at the value added of additional information to administrative data. So they had a great chart that showed here is a group of patients that all look the same – as you add present on admission, vital signs, selective lab tests, and selected clinical data elements, the splay among that group that looks the same over here goes almost three standard deviations.
I think what is so powerful about that is the objections to administrative data have been that it is all – you are not risk adjusting. By demonstrating through trial and error they have come up with the things that really do separate those groups. I think the things that they were advocating for are not overly ambitious – they are pretty much readily available. The labs are certainly already electronically available and the vital signs we don’t have electronically available but we — I agree, I think that is one very important thing.
MS. MC CALL: That is one of the reasons we were looking at what to do with regard to where we were going to go with quality – we started to add present on admission on this last iteration. The other thing I wanted to point out too, she also did the adding of present on admission, the lab, the vital signs, and up here was the electronic health record. It did not add much value.
DR. BICKFORD: Not only did it not add a lot of value its expense was astronomical. When you start looking at the ROI – you go this should be a long time before we start rushing along into that.
DR. CARR: I think that it has been a stepwise process. As I recall, Don was there for the 2004 hearing, where everybody stepped forward wanted every data element, every lab test, every vital sign, in minute to minute continuous monitoring. What has been very good about this is saying with all those things you might possibly get albumin is the most important lab data element that you can get. Albumin predicts mortality better than anything else. We heard that again in someone else’s presentation – NSQIP, same thing, that albumin does it.
We have gotten to a more refined intellectual understanding of what elements we are looking for. I like it very much because we are approaching quality and then saying, now, how can we get it. There is a tool called electronic health record or electronic elements. I think that that was really very powerful.
MS. MC CALL: Along the same lines, too, I think the last two presenters, JCAHO and the nurse, Isis from NDNQI, basically just saying the debate has been between clinical and electronic for administrative data. She pointed out that there are other avenues to collect data from like nurse staffing ratios, pharmacy calculation of patient – these kinds of things from different HR – different sources of data and I think that was really clearly pointed out to the point where it is just like we cannot just a full picture of quality from clinical or MSO(?) we have to take areas like –
DR. BICKFORD: To amplify that a little bit, I found hers also very powerful and she was such a delightful speaker. I think that we are forgetting something. We are forgetting even to measure those lab values, whatever, to understand the context in which this patient is – the context being processed and part of that process being what she spoke about. So, isolate a metric and say somehow we have captured it all, we are missing a piece and she brought it.
The piece that kind of struck me later and it was when it was when we were listening to the women from JCAHO and she was talking a lot about manual processes and what it would take to do it manually – down to take charts and all of that. It appeared as though two things would happen. Number one, that the process if you were to make it electronic, that that whole equation is getting left out of the EHR. That is the impression that I am left with. I don’t know if that is the case but it makes me wonder, kind of like the comment at the tail end of the population group, if you had the EHR everywhere would what she described be there?
I would say that that would be a recommendation I would make; don’t forget these processes. Number two, maybe it is a sub-point, when we capture these processes I don’t want – when she said here is how you do it manually – you would not be able to get down to a patient level. This whole thing needs to be patient centric because it all about things that surround the context but it is the context of the care. You have to put flags and tags and taxonomies on everything so you can cut it any way you like. If we codified out what she said, we would not be able to get down to that context of the patient because what I would want to do is to look at those patients that were treated by certain types of units and all the things that she chatted about, and see what the metrics are that our gentlemen from Norton’s was talking about. I can’t do that if I can’t have a common element in it.
MS. MC CALL: I was going to say along those same lines, NQF is working with – are commissioned to work the AQA and HQA to find the common data elements and we are not getting anywhere fast.
DR. BICKFORD: That to me was a general recommendation.
DR. STEINWACHS: It gives you an understanding of diversity.
MS. MC CALL: It does and they are only starting with a starter set of maybe ten elements. Of course, what we learned from the guy from VA was basically you can’t have it in a structured format – a lot of it is text and you still have to search text to find things.
DR. STEINWACHS: May still do it with people.
DR. GREEN: I’d like to build on this these comments about EHR and offer a slight rotation to what I just heard. I really totally agree with what I see as a fundamental assertion that if you think the EHR is going to solve your quality problems you are living in the wrong planet.
It would be a mistake to not recognize how potent this is. What I thought I saw in the hearing yesterday was yet another set of testifiers pointed out how immature the outputs are of the EHR’s. The EHR’s are still sucking the life out of the provider system to try to get the inputs in there and there is almost no effort being put into it.
We don’t want to – I want to advise caution about overstating what we heard about the insufficiency of EHR. It is no a panacea. It is just another tool but it is a tool that is going to be there in the future, it is going to continue to mature and there is going to be a day when you are going to be able to do those Google style queries like he said, and you are going to find the free text stuff too. By then we know that that is the measure that we finally did get to.
DR. BICKFORD: To that point about free text, I would love a letter that says, recommends some research into how to extract because it is always going to be there and there is some exquisite methodology in technologies. We are using some of it and it is kind of some weird science but it can in fact, pull out of free text blogs, PDF documents, this stuff. What are the common themes that occur in association with each other and present them to you. Not as an answer but literally as in a cloud and you can go in fact these are related to each other and then you can begin to turn them into codified things.
Enough on that other than to say I think we could call for some work that could be commissioned say how can you work with it because it is a reality.
DR. GREEN: We should look very broadly there. I personally think that the United States is well in the rear of the planet’s approach to doing some of this data extraction from healthcare and healthcare records. We want to go to New Zealand, we want to go to the Netherlands, we want to go elsewhere to look some –
DR. CARR: I want to make sure that everyone has a chance to speak.
MS. GREENBERG: I thought it was great and want to thank those who put it together also. To me it brought together and in some ways did show, despite the immaturity of the electronic health record right now, it did show some maturity in the whole process to me having been knocking around these issues for 15 or 20 years. It seemed like we had made some progress even if not quite where we were expecting.
I guess, maybe it was Larry who said this, I thought it demonstrated that there is a lot that can be done right now with available data, particularly by enhancing administrative data. That came out of obviously the work that AHRQ, which I really commend them for doing a really good, solid, statistically valid study of that because we have been talking about it forever. Also the Pennsylvania presentation – I think you really heard from some of the leaders and that was great.
I think that was really exciting. I have no doubt that a really robust electronic health record system such as Hunter Mountain has that Stan reported to us on, or that VA seems to have, can really improve the quality of care. It just has to be able to. That doesn’t mean that EHR by itself, is going to be the answer or that you can’t assess quality and improve quality without that kind of a system. It is pretty clear that very few systems are at that point. We can’t sit around and wait for them to get there.
I think recommendations on research that needs to be done – I was struck by the fact that the VA – with all of the money that our government and Australia and the UK and Canada, just to mention the English speaking ones, are putting into SNOMED and this new international health terminology SDO, it didn’t seem to even be on the VA radar screen. I think it is but it certainly wasn’t for him.
I think areas where research was needed, where demonstration is needed and also things that really need to be – it is like we were talking about privacy – build it in now or otherwise you are going to be retrofitting. It is the same thing with electronic health records. I thought what Denise Remus said about these really kind of pretty sophisticated products requiring so much customizing.
DR. BICKFORD: That gets to also what it means not just to get it in but to get it out. So I think there could be further testimony on what it means to make any sort of EHR system just a little bit more out of the box ready, to Ms. Remus’ point, and it is more easy to get things out and out is not just data but it is going to be measures.
MS. GREENBERG: Not just data for the patient but population based data for measures and other related purposes.
DR. CARR: I’d like to go back to what Larry was saying because we are hearing that SNOMED is not an intuitive language for clinicians and how you say what you say in your daily work and write what you write in your daily work and have it translate into that I think is an area of research because I don’t think we can extract any more sophistications from the clinicians on how to tell about the care of their patient in a new language.
MS. GREENBERG: I guess we need to rehear from DOD. I don’t know if you tried to get them there or not because they use MEDSUN(?). Obviously with SNOMED is not an input terminology. I think we need to hear from people who are using interfaces but the whole vocabulary terminology one is an important one and also not only something that is friendly to clinicians but then the whole issue of personal health records and what is friendly to the patient.
DR. CARR: In putting it in if we can get a cross-walk to that language and taking it out if we can do it with text search.
DR. BICKFORD: You can also do text in, as well. What I would love to see is for us to kind merge some of those. It really has to do with kind of input and extraction in ways that are more natural for people and can be translated because it sounds like it is also an input issue, as well.
MS. MC CALL: Remember Benton(?) at the variable end about doing an interface where you could have text go in and then in the background have it extract itself and already at midnight go to your performance measures and then fix it up the next day. Is that pretty much – okay.
DR. BICKFORD: It would serve us well, if this is our role or may it is research – I don’t know, but to do a survey of the landscape of what in fact is possible, to survey of the possible, of things that are not cutting edge technology but they are new but they are robust enough that they can be used in these types of environments. I think we would be delighted.
DR. CARR: I think that your point one recommendation that the area of focus is recommendations on research particularly with this cross-walk of language and retrievable thing. I want to just go back to when we were talking about the nursing presentation yesterday. It struck me that when you think about the evolution code quality measurement it began with CABG mortality and bad cardiac surgeons and good cardiac surgeons, quote, unquote. We thought it was all about who was a good surgeon.
Then we began to learn that mediastinitis, poor management of the wound, glucose control, suddenly it was not just about the surgeons technique it was about complication prevention. This third layer that we heard about yesterday is not as specific but it is the infrastructure of safety. Did you fall out of bed? Did you get a pressure ulcer? So it is not related to what you came in for but it is the quality of the care that underlies it.
It really parallels our thinking about how we measure quality and it is taking us to another level that we have all of these providers and these potential risks that we need to address. My point being that just that sort of informs the way we now build our data collection. It makes perfect since that we need to know about the nursing hours, the safety from falls and all of that. So as we are building something we build it to include that information.
DR. BICKFORD: I heard another theme and this had asked for this specifically, and it really had to do with standards. It was around in this case, measure design. What I heard was that things can be slightly off but if they are slightly off then they off. What that means is double work. I don’t know who the entity would be but I think we could recommend a transparency route so there is standardization of how a metric, its numerator and denominator are defined. I think people would give a lot of money for a body that says, this is how it is going to be done.
(Simultaneous comments)
MS. MC CALL: — measure developers that is put out there. Paul Tang is going to be testifying in front AHIC. They do have standards about what AQF will accept and that is kind of where Equity(?) if finalizing their stuff now. The data stewardship would be another addition to it. I am not exactly sure and it will be interesting to hear what John has to say tomorrow about how it does work with NQF or doesn’t work.
DR. CARR: It is a recurring theme of what you measure and how you report it. Do you measure that in A1C was done or what the A1C was and do you measure the result as a merit or as a less than or greater than. I think it is worth mentioning that. I think in hand it has some action with it.
MS. GREENBERG: On the burden thing – the standardization – we have been hearing that for years.
DR. BICKFORD: When you say it is “in-hand” – I know that it is not done yet – but what do you think the outcome will be? Will there be a body that says when it comes time to measuring X this is all the elements that go in and this is the arithmetic or the mathematics.
MS. MC CALL: NQF’s position right now is a little tenuous, should we say. They did put out guidance to measure developers and they are the ones that are the final pathway for healthcare measurement; JCAHO, CMS, AHRQ, NQR. AHRQ says they are going to put their measures through NQR. There is some guidance there. It started, basically, it is a voluntary entity measure though.
DR. BICKFORD: Maybe if we still put it in a letter just to try and continue to beat the drum.
DR. CARR: Sure. Definitely. I did not mean to imply that.
MS. MC CALL: Bandying(?) about for standardization instead of calling it standardization.
DR. BICKFORD: That’s fine. The other thing that struck me, and I don’t know if this is something they would even consider, it is almost as though – thinking about the skill set, we talked about skills, and there is going to be a profession that is going to begin to emerge around data. SO it is not so much the programmer any more as it is around the development of lexicons and meaning and semantic meaning. You can almost imagine on language – they talk about inclusion criteria and exclusion criteria – that in fact there becomes a general way of describing a measure and so you could imagine this organizing body, in addition to saying this measure is calculated this way, developing a whole language of how you actually specify measures, period.
DR. CARR: Thinking back to that whole, we heard early in the day, the first presentation was from AHIMA summarizing their meeting from last year and then applying it to what does it mean to get the CMS measures and who does it and where they find it and how much effort it is. And so I wonder – a piece of that is collecting it many different ways. A piece of that is that it might be in a paper record or in an electronic record that you have to read and transpose, and a piece of it is there are so many things to measure. Is this right? That in some ways, with the administrative data and a couple of other elements, you can tell a story and you can do it pretty electronically without any of your administrative data you already have and adding some elements to that is one thing. But all the CMS measures, the JCAHO measures, the IA, the 100,000 lives – all of these things. There are so many people coming up with measures, so is that part of the harmonization? Not just how you ask for A1Cs but I am asking for beta blockers and aspirin. And retirement of measures was another issue that came up, that if everybody in the country has been in the 99th percentile on O2 SATs in pneumonia, then why are we still measuring and collecting it?
So having something about some of the themes on burden and what are the things –
DR. W. SCANLON: There is an issue, though, in terms of how you get to the measures you want. If there is a common set of building blocks that can then be manipulated in a whole variety of ways for different purposes, that is a lot different than if everybody had a different set of building blocks that they wanted.
One of the things I took away – I still don’t like the distinction of administrative versus clinical data because right now even JCAHO requires it for certain Medicare claims and you can make anything administrative data by saying we know want this to be submitted. SO the issue is if you request enough building blocks and give people flexibility to create the measures out of them, and I think someone actually mentioned this, it may take sort of a few weeks to develop the program that is going to do the calculations you want, but once we have done that then from that point forward we can always make those calculations. It becomes pretty trivial
What would become problematic is that if somebody set up a program to extract information and transmit it to you and you come along tomorrow and say now I want something else added to that, that becomes potentially more problematic, particularly if it is not going to be coded.
The real mirror of the lab value information was that it was already electronically available in a lot of circumstances. And the issue is how do we get to more things like that without making it such a big deal in terms of extraction?
DR. GREEN: Can I build on that in two ways? One is that I thought one of the more important things I want to vote for eventually becomes a recommendation of some sort is there are a couple of people that pled that the key definitions in the operating software that you spent two weeks building stay in the public domain. I thought that was a very, very important statement that we need to track. We don’t want that software locked up and then Intermountain Health does it another way and it just keeps going and going and going.
The other thing is there is an intersection for me with the workshop that the National Quality Forum did about getting health measures to be found in electronic health records and this sort of stuff that they did about six weeks or so ago. There is a pretty robust discussion there that did not occur in our hearing yesterday. It had to do with quality of life measures — a measure that a human being understand and expresses. Doing an injustice to a lot of smart people who were there, but the bottom line of it was that there was skepticism about the performance characteristics of the quality of life measures, and they wanted more evidence that they were sensitive to change and that sort of stuff. But the overall gist of it was a five-point Likert(?) scale asked in a particular way – you know, when you ask it to a thousand people someplace that they say they are at four, they are at four – and if they drop to 3.8 you are in trouble. Knowing something like that would be hugely useful, but there was skepticism about its immediate availability. At Kaiser, when they use these QOL things – they are already suing them, there is already a lot of experience and I think we ought to pay attention to something like a QOL measure.
DR. CARR: I want to make sure that we get the framework and we will fill in – Susan is wonderful at writing things up – but the story that we want to tell, this is what I have so far. The power of administrative data, the nursing measures, the infrastructure, safe infrastructure, capturing that, then the technology, text search, understanding more about that as Bill said, and then building measures, managing the burden better in terms of having building blocks and having it in the public domain. I want to know if folks think – we spent the afternoon talking about public reporting and what do we want to say about that?
DR. GREEN: The best quote was nothing sanitizes as much as sunshine.
MS. GREENBERG: They all seem to be singing the same song and I am sure we could have found other people. I remember working with the national committee when the first HCFA mortality data came out. You were on the committee then? Remember Carmel Jackson?
DR. W. SCANLON: Every meeting it was like what are we going to do about this rotten data?
MS. GREENBERG: Yes, because there was no transparency, there were errors in it. The first time people heard about it, physicians or administrators heard about it, was when they got the call from the local newspaper saying why are you killing more people than you know – maybe things have gotten better or people learned after that, but we didn’t hear any of the downside or any of the negatives.
The interesting things was, and it has to do with this whole kind of system – I heard a lot of system stuff yesterday — but it is not just that releasing this did that, although people showed some of those, but just the environment that is created by this kind of improved things internally and externally.
DR. BICKFORD: I would add, to answer your question what do we say about public reporting, I think we need to say something and what I think we need to say is start with that quote – nothing sanitizes like sunshine – there is nothing like it. And that the system benefits. Public reporting is a misnomer and the true benefit, the first benefit is in fact the light of day and the benefits on the quality of the data itself, so you get a really nice flywheel effect in the fact that sometimes people are looking at themselves for the very first time. And they go oh, my god.
So I think we just share what we heard. I think it was relly powerful.
DR. CARR: It was powerful and I think we did hear the pushback that came about when things were first revealed and I think we heard something very important from at least two speakers of it can’t be a surprise marauder that appears in the newspaper. But it is previewed, it is transparent, it is discussed and that collaboration is a part of it. And we heard the power of the NSQP data that it is not publicly reported, but it is aggregated data. But it is something that clinicians have participated in the development of. I think some of these other things, going back to the clinicians and vetting them and showing this is you and this is them and why is that? Then the advance of these enhancing, you know, understanding albumins and so on.
MS. MC CALL: I would add auditing to that.
MS. GREENBERG: And keeping the algorithms in the public domain because you can reproduce it.
DR. BICKFORD: And it is not just reproducible but it is somebody who is coming up to speed. You can easily quote it so it becomes quotable.
DR. CARR: Were there any other themes? What I want to do to end on time at six o’clock is to think about where do we go from here and what do we do with this report? Is this a letter? It is on inpatient only; do we need outpatient? DO we need other care settings? I am very sensitive to this because we have done a lot of work in the past and we didn’t bring it to closure. When I look back on the work that we’ve done there is some great work and it only exists in Susan’s hard drive.
DR. BICKFORD: I would love to create something and I don’t know if it is a letter with recommendations or just a letter, but I’d like to create something.
MS. GREENBERG: From yesterday. That is what Mary Beth and I were talking about because now we are going into the secondary and it will be awhile before another hearing. But I think not only create something, but push it out there.
DR. BICKFORD: Can we use it as a way to say these are yesterday’s discussions, were in fact validated, some of the broader themes, so that we can find a way to pull some of this through or repackage this in its entirely. But is has now a layer on top of the specific discussions along with specific recommendations.
DR. CARR: Yes, there was this widening revision. You have two things in your packet. One is, in 2004, there was a summary again. It had been a number of years, a lot of work, a lot of hearings had been done, and then this was the report. It was a bit overwhelming because there were twenty-some recommendations – I think 23 candidate recommendations. I mean it is eerie – things like clarify privacy protections, add POA, add lab and vital signs. There are things in here that actually have happened, so I think it would be worth doing that. Widening the vision was something in February of 2006 that we worked on just kind of saying what the landscape was and where we ought to go.
MS: GREENBERG: And we used it to brief the Committee.
DR. CARR: We used it to brief the Committee, so we probably want to take some of that good work and build it into this. But I think we should definitely get the word out.
DR. BICKFORD: And the recommendations should call us to do more work, too.
DR. STEINWACHS: I was just going to push a little bit differently since I have linked data sets on the mind. What came out to me was the administrative link to clinical data that should be available through EHRs. And then to organizational administrative data, it struck me during the nurses presentation I am not sure an EHR ever tracks where the patient is physically. So if you were to word in blue(?) from one med search unit to another, unless by some accident someone wrote a note in, a transfer, so the records of where you are, the staffing, the things that came out of that begin to link data sets. So maybe part of the message is to have the power to address the quality issues as we understanding them – patient safety. We need a strategy that maximally utilizes the EHRs but puts it into a context that utilizes other information.
DR. CARR: We have administrative data, whatever that is, we have where everybody is because we track that.
DR. STEINWACHS: The hospital tracks it, but the EHR may not track it.
DR. CARR: No, but again it is linking that. It links it to the administrative and you can find where the person was.
DR. STEINWACHS: That may be non-trivial because that talks about a time stamp on everything in an EHR in a way that you can match.
DR. GREEN: It is across settings. I mean, you leave the ICU and you go somewhere else and then when you go into a hospice or nursing home and then when you are back home, it is linkage across settings.
DR. BICKFORD: I also think there is something buried in what we just said. I think there is an assumption o people’s part that we will move away from administrative data and systems to an EHR and what we have just said is, in fact, there is a third piece in the room and it is the synthesis thereof. It is not just linking but the product as you bring them both together. The EHR is not going to have some of these things you are talking about ever.
DR. GREEN: Justine, you said you wanted to make sure we included – I think you said at the very beginning of our discussion, but the big point about simplify it, simplify it and it enhances the problem going tin and it will get done and it will reduce our reporting burden and our FTE requirements. Several people were trying to quantify the FTE stuff. You have that in your list?
DR. CARR: Yes, so you are saying this in terms of the administrative burden? I think we saw that once you had the queries set up using the administrative data, then your burden is done.
DR. GREEN: There were different sets of people saying two different things, but they united. You want to keep the measure simple. If you can get it with the albumin, don’t ask for seventeen other things. That was their message, and we got that one. But there were also those people who were saying that they had added twelve FTEs for data abstraction. It seems to me it is important to not lose sight of that.
The other thing – Bruce said something that seems to me is one of the 30,000-foot statements. I wrote it down. He said if you are in a business and do a good job, but you don’t provide pertinent measures about your work, you didn’t do a good job. That is a big sentence for what we are talking about here. That is one of those 30,000-foot grab-it-all sorts of statements.
DR. CARR: You can put that in with the public reporting one.
DR. CARR: I heard two things. I thought it was powerful when you looked at the FTEs that were going with it, but then at the end of the day when I brought it up that maybe there is this emerging group of workers who do things like understand definitions and all that – I got a lot of pushback on that because the sense was we want to simplify.
MS. FARQUHAR: I think you are referring to the financial burden of the coders as well as the abstractors?
DR. CARR: All of the people who have to be hired.
MS. FARQUHAR: What Carol is talking about is just needing the qualified workforce to understand what it is , the process that goes to developing the quality measures and the reporting. I don’t know if everybody was here yesterday when we reported that this one university saw a 72 percent increase in financial resources in just three years, of over half a million dollars. I think that really tells the tale.
DR. BICKFORD: That is a really nice analogy that has to do with value certification. I think people underestimate the value of all these people even if you do have to do abstractions or even if you have to code things up, is to get that educated workforce. So put that in there, underneath burden.
MS. FARQUHAR: I think MAIA is even working on developing a new type of health data not field, but description of a profession to address these types of things.
DR. CARR: Mary Beth reminds me of our first meeting, where I happen to be at AHRQ. I went and found her office and said I have a great idea – coding for quality. I had just come from a meeting with our coders that were like, what, that’s a Lyme infection? We use that for all these things and you’re like, oh my god. And just bringing coders and clinicians together, it has made a huge difference for us. We were measuring a huge improvement in Lyme infections and when we looked at our coding there was no difference, the reason being that the coders saw possible Lyme infections and the docs all had morbidity and mortality – and we found out that wasn’t a Lyme infection and it never got back to the record.
DR. BICKFORD: The first snapshot they took of the data was bad, and the first rework of it was just cleaning up the data. The next picture was actually improvement in quality. SO that is again under public reporting – I think it will create that alignment. There was another thing that went all the way through it. Isis had a great story. It was one of the derivative products of getting the data cleaned up, seeing the value of certification was in fact a creation of the certification program itself, using the very findings they had found among other things. So it was just a really interesting derivative outcome of the ability to measure quality and seeing the value of some process was then use that very same result to try to make an improvement.
DR. CARR: Okay, our remaining four minutes –
DR. STEINWAHCS: You might think about IOM report on patient safety – keep talking about a learning organization. We tend to talk about quality and sometimes when we talk about it it sounds like build the database, measure the quality – you are really also trying to use that to measure how well patients are doing. In addition the learning organization draws on other sources of information. But it might be worth mentioning that this provides the information foundation, the data foundation for this to be a learning organization about how well their patients are doing, combined with external research information.
DR. BICKFORD: You can pull the thread on point seven here, because one of the things we have pulled through in the earlier vision papers was what we called the health statistics enterprise. That was not just technology, it was an enterprise that created a learning system where people get together – so we can pull that through there.
MS. KANAAN: Could I just throw out one other point? I pricked up my ears – I think it was Bruce maybe mentioned the thing about — he threw in the population dimension. I can’t remember exactly what he said, but I thought, aha, I wonder if that is going to be a theme, because as we found when we did this, the report together with other things, and the hearings that led to this, there was always a recognition that we need to find ways to link the individual to the population health. And yet it is always a theme that kind of gets lost. I wondered if there is any way to pull – you know, it really wasn’t properly – you couldn’t properly call it a theme yesterday. But I think it was present.
DR. CARR: I think what we ought to do is go back and look at those hearings that were done, going back even to May 2004 through now and try to support what we heard yesterday with then and now, what’s getting better, what remains.
DR. BICKFORD: And we could suggest our own next steps. SO if we want to expand beyond inpatient, which I think we do – I was rounds(?) focused, but there were some things that came up about other settings and getting away from a lens of pathology – that would suggest our own work after we come out of secondary uses.
DR. CARR: SO my suggestion would be that we get a work product together for the September meeting. And that we then, because there will also be this work going on about secondary uses that is just going to fill up every remaining week of the summer, and then in September, when we have incorporated what we have, I think it will become clear which of the next steps that we have heard about we want to go to. We have talked about other settings.
DR. GREEN: What is you r vision of how the work wbout secondary uses –
DR. CARR: It is just that I cannot go to Standards – the people thing.
DR. GREEN: But what is your thinking about how they connect?
DR. CARR: I an not thinking of it immediately. I was thinking more that that was going to take up the space. I think it will a bit, but I actually think – what I like is we are talking about what is happening today and we’re describing how linkages of lab data and so on are good – I don’t know about the secondary use of data. I think there is a lot going on with the EHR.
DR. GREEN: I would just argue that we should really hang loose about that. I go back to your point about the nursing and bed ratios – those data are not collected for the reason that we want to us them for, You want to use them for context or to contextualize. You want to geo code and know where the patient was. That is secondary use of data, right?
MS. GREENBERG: That is taxonomy because we don’t know what we mean by secondary use. But this project is going to drill in on the quality use case.
DR. CARR: Definitely it will be related to that. My sense is let’s get a work product from this, building on the earlier hearings – a kind of then and now picture –come back together, probably in anticipation of the September meeting maybe even have it ready to go in September, and then when we have our work group meeting, say where do we go next?
MS. GREENBERG: Is this just for the group or something we want to send forward?
DR. BICKFORD: Let’s be aggressive. I’d like us to make a recommendation to send forward.
MS. GREENBERG: I think it is fine that you don’t want to hide your light under the bushel basket.
MS. KANAAN: But is the document – you don’t have a recommendation obviously to build a report around yet.
DR. CARR: I think we do. We heard some recommendations, certainly about burden, harmonization, continued use of administrative data, enhancements on that.
DR. BICKFORD: Let’s go back and recall the conversation we had with Karen and how we got into this, because there were specific things that she said I really want to know about. I want to know about things. They are usually there because they can influence something that is coming up down the road. So what I think we need to do is sort of flesh that out and say what did we learn that would change something that is getting ready to happen three or six months from now.
DR. GREEN: I wasn’t at that. Is AHRQ the principal audience for what we are doing?
MS. MC CALL: Carol is involved in the AHIC work group.
DR. CARR: Your question is a good one because I think we want a larger audience. I think it is informed by Carol in saying here is an important thing to talk about. MS. MC CALL: She is involved in a lot and that why I think it is nice to talk to her, because everything converges in her and then we talk to her.
DR. STEINWACHS: She is active in the IOM Evidence-Based Roundtable and part of that is metrics – how do you know if you are getting any better?
DR. CARR: SO would this be a letter to the Secretary?
MS. GREENBERG: It could be a letter with a background report or something. I don’t know.
MS. MC CALL: What we said yesterday about a report – a report would be good for people like AHRQ, for JCAHO for every measure developer, NQF. There is a whole slew of people out there that are interested in this topic.
DR. CARR: So that helps us bring together our other things. But we have to keep our eyes on the finish line here – ready, aim, aim, aim –
DR. BICKFORD: Okay, timeframes and next steps. For that, September is, given the summer – for it to be camera-ready is probably aggressive.
MS. MC CALL: Can we flesh out some of the themes and maybe a paragraph about each? Maybe put in some quotes like some of what Bruce said and some of those things might be good. So at least you have a framework.
DR. BICKFORD: DO you think we would have something to circulate for full committee discussion by that time?
DR. CARR: Susan, when can we have a first pass with some highlighted discussion of the themes that we talked about?
MS. KANAAN: I will begin to work on this, but it will be two weeks before I get the transcript. So I would say the end of July.
DR. CARR: Okay, the end of July. I think we will play it by ear. I think what we could do, if we had time, would be to start looking back on what we have here and the transcripts from the testimony.
DR. BICKFORD: I want to kind of ramp into this.
DR. CARR: That would be fabulous. If you could take a look at the testimony and get the things that really resonate with what we heard yesterday, whether we have made progress or no progress.
(Whereupon, at 6:05 p.m., the meeting was adjourned.)