[This Transcript is Unedited]
The Westin Hotel O'Hare
6100 River Road Rosemont, Illinois
DR. LUMPKIN: My name is John Lumpkin and I am chair of the National Committee for Vital and Health Statistics. Today I am here as sort of a dual personality. Dan Friedman who is scheduled to chair this morning's session is stuck on a runway in Boston which wouldn' FACE="Courier New">t be so bad except that he was supposed to get in here last night and spent about six hours in the airport in Boston last night because of the weather in Boston and now he is stuck in Boston because of weather in Chicago.
For those of you who may not be familiar with the committee, this is our last hearing we are going to hold in Chicago. The first hearing that we held here about two years ago, we had a storm that also got in the way. It was a political storm over the unique identifier for individuals and now we have an actual weather storm so we will have to think long and hard before we come back to Chicago despite the fact that certainly it is near and dear to my heart. And, as Clint said, although he has weathered his own individual storm over the last week.
So we are going to start off with some introductions. We are going to sort of play loosy goosy with the schedule. There may be some people coming in late who because of weather and planes may arrive late. There may be some people we may ask to go early so if you are here and you have your stuff for the morning session, don't be surprised if I bring you on a little bit earlier than planned and I will beg your indulgence, So let's start off with introductions and we will start off with members of the committee and staff to my left.
DR. GREENBERG: Good morning. I am Marjorie Greenberg from the National Center for Health Statistics, CDC and I am executive secretary to the committee.
DR. MCDONALD: I am Clem McDonald, a member of the committee and I am from Indiana University Regenstrief Institute in Indianapolis which is close to Chicago.
DR. NEWACHECK: I am Paul Newacheck, a member of the committee from the University of California at San Francisco.
DR. WEINZIMER: I am Rob Weinzimer with the National Center for Health Statistics.
DR. HENDERSHOT: Gerry Hendershot, National Center for Health Statistics.
DR. DEERING: Mary Jo Deering, Office of Disease Prevention and Health Promotion and lead staff to the National Health Information Infrastructure Work Group.
DR. GIACHELLO: Aida Giachello. Good morning. With the University of Illinois, Chicago, Midwest Latino Health Research Training and Policy Center.
DR. Merryweather: Pat Merryweather, Illinois Hospital and Health Systems Association.
MR. ZANGRI: Al Zangri, Naitonal Association for Public Health Statistics and Information Systems.
DR. LUMPKIN: And if we can ask the audience to please introduce themselves.
[Audience introductions]
DR. LUMPKIN: Great. As you know, Dan has a quite an extensive presentation that he has prepared. I would like to show you his slides except they are in his laptop which is in his office or on his floppy disks that are in his possession on the runway in Boston. However, since I did get some warning last night, I have a few introductory slides I will go over to the laptop to present.
For a number of years I have been preparing my presentations in Powerpoint, but I have to admit that I have yet to, I don't frequently give my presentations that way. I happen to be a skeptic about technology in that I believe that technology should be relied upon where it is reliable. I learned that lesson the hard way mainly because I used to be on the leading edge of technology on my home computer. Now I have gotten to the point where I usually stay a generation or two behind in processor so at least I know that the technology will work and certainly the software doesn't demand it.
But I do have a presentation on Powerpoint and I did bring overheads just in case because I have learned the hard way you can't always count on it.
We will talk this morning about health statistics, this afternoon about the National Health Information Infrastructure. These hearings are being held together because they are very integral parts of the same thing.
We are going to talk about first that what do we mean by health statistics? Health statistics are, as we define it, are documented health data that can be generalized to a known population. That means either individuals, events, organizations and institutions. Health statistics are collected with the intent to design, implement, monitor and evaluate health programs and policies, to take seemingly isolated events that we deal with in a broader context. We are not too far here from Milwaukee where not too long ago seemingly isolated events associated with gastrointestinal disease and diarrhea and stomach upset, a number of isolated events but when you begin to look at them in context, there is a tremendous number of people who were upset. It was through that work of taking these isolated events, they were able to trace that to the water supply and cryptosporosis was identified and they would be able to take measures and increase the treatment of the water, reducing this major outbreak which involved some 300,000 individuals.
And also unresolved privacy and confidentiality issues, all of these things a part of health statistics and what we look at as can be identified.
The problem with today's health statistics system was first of all designed decades ago which is okay, but the system was designed to answer issues. It was designed to use certain technology, both technology on the hardware side and the software side and, like many things in government, as a governmental system, it moves and changes very slowly, mainly because when you are in government you know that sometimes you can make a case for it. You can get some money to make the system but after that, Congress or whatever legislative body believes that they have solved the problem for at least a generation and it is not until you can re-identify, get the to re-focus, can you change that.
We have developed multiple systems. We have AIDS, vital statistics, we have registry for cancer, for lead, for a host of other things, and we have surveillance systems for various illnesses such as sexually transmitted diseases. But there are certainly some key problems. Some of these problems, one of them which I identified before was that there was an unclear landscape for privacy and how privacy covers the legislation that covers the data. It varies from state to state and sometimes from locality to locality.
We also know that while we have a rich national data, set, the data often cannot be broken down to data that is relevant at the local level.
Other problems that exist with our health information system is it really wasn't designed to handle the complexity and the diversity that we as a country have begun to identify and embrace. Our information systems kind of was able to handle race but the fact that the health issues of someone who was African American through many generations versus someone who is African American and a recent immigrant from Ghana or from South Africa is different. We have not been able to address that. Same thing with those who come from various nations south of the border in Central America and North America such as Mexico and South America as well as other parts of the world which we all tend to kind of lump together as being Hispanic whereas both the racial and ethnic make-up of this population is extremely diverse.
The same thing is also true of the, what we loosely term the majority white population. In Chicago which has a large number of very ethnic neighborhoods, I once worked at a hospital, St. Mary Nazareth Hospital (I worked as a couple of St. Mary's, I always get them confused), it was very interesting because there were three languages that were spoken in the emergency department, English, Spanish and Polish because there was a very large Polish immigrant population and again our health statistics system is not really geared to handle that.
The other piece is that the data that is on the national level just doesn't seem to apply. We have tried to address that in Illinois by using things like the behavior risk factor survey in collecting the data on at least a county level every four years so we can begin to look at trends with the national communities and use those for health planning and direction.
The other problem that we have is that much of the data we collect is not very well integrated. We had a meeting just last week amongst our staff to talk about some of our data related to a simple event, a birth and we had a number of health information systems. We have the vital statistics system, we call it EDC, electronic birth certificate system. So someone in the hospital has to fill out the electronic birth certificate system. In addition, the child may be registered for a state program, for WIC or other maternal and child health systems through a system called Cornerstone. In addition, if the child has had anything that may challenge them in the first few years of life, they may be registered in what we call our adverse pregnancy reporting system, APORS, Adverse Pregnancy Outcome System and immunization registry.
All of these are separation information systems and all of them don't speak to each other which means that everyone sitting at the hospital associated with that birth has to fill out a whole host of forms and computer screens related to one single event for one single person.
Recognizing the problem, the coalition of the National Center for Health Statistics, it was really based upon their initiative, the National Committee for Vital and Health Statistics, the Department of Health and Human Services Data Council and the Naitonal Academy of Sciences Committee for National Statistics sort of got together and began a three-year initiative which we are right in the middle of. And that is to begin to identify the problems of our current health statistics system, identify barriers and gaps and to come up with recommendations for change. This area is really a key component of that.
The issues and questions we are being asked is what health information will be needed, what conceptual framework meaningfully organizes this information, what approaches collection of storage and communication will get us to where it is needed so the information will get to where it is needed, and finally, not finally, last and certainly not least, what privacy, confidentiality and security protection should be in place.
It is kind of appropriate for us to be talking about these kinds of issues in Illinois because, for those of you who don't know, there is a fairly significant lawsuit that is kind of percolating this way in southern Illinois where a newspaper has sued to get hold of our cancer registry. They want to know three simple things: they want to know for each person in the cancer registry what the type of cancer is, the date of onset and the birthdate. Those three pieces of information. We would supply that information to a consultant. That consultant has, with amazing success, with those three bits of information, was able to identify half the people that we sent in the test case so we sent them 100 names, our consultant was able to identify 50 of the individuals.
When you get outside of Chicago, if someone has a diagnosis of Kaposi's sarcoma, he is only going to be one or two cases in the county, so if you know the zip code, if you know the type of cancer and the date of onset, which are the three variables, I am sorry, I may have missed those, but those three variables, a person's identification can be done with 15 percent accuracy.
Unfortunately, the judge in the area where this case is being heard was noted to comment at one point, well, to get that information you would have to use a computer, wouldn't you?
So, sometimes we have to work on these issues and hence some uniform concept of privacy is very important. The events are unimportant. Trends and gaps which we will have some comments about, I talked about some of the demographic and environmental factors, some of the social, economic changes in disease, patterns, both with increase in a chronic disease as well as emerging and re-emerging infectious diseases are having some impact.
We have to put in this category our new understanding of health and health care. When I was going to medical school, we treated ulcers with anti-acids, you treated them with changes in diet. That is not really considered to be very effective anymore. In fact, many ulcers are now treated with antibiotics because we learned about helicobacter pylori which is an infectious cause of ulcers.
One of the interesting side effects of the studies that have been done on the influenza vaccine is that those individuals that have been inoculated with the influenza vaccine tend to have fewer episodes of myocardial infarction during that particular time. Perhaps there is an infectious component. How does that plaque break down which leads to the development of thrombin and the clot formation? Maybe that is an infectious process. We don't know, but I suspect we are going to find out more as time goes on so not only about new emerging infectious disease but newly discovered.
The health care system is in a tremendous transformation. How do we understand what is going on? What are the impacts on health and health care by using this transformation. And, by the way, tremendous amounts of scientific research, the human genome research project being the least but certainly is the one that has been the most traumatic and what are the impacts upon that in the future.
Further trends. Information technology is going through radical transformations. I think IBM just released a small new hard drive that is about the size of this quarter. There is a gigabyte of information. And they continue to get it smaller and smaller.
We have to balance privacy versus the common good, and this is an ongoing issue as people become more and more concerned about the ability of technology to identify them. We have to convince them that there is some importance for them giving up this information - concerns about the quality of data, the resources to collect the data and, of course, the burden of collection going back the birth certificate example or the birth example I gave earlier. All F.O. these are important things for us to identify.
We have held a number of hearings. In these hearings we have identified so far 10 principles. Let me just run through these quickly and then we will go to the first panel.
The first is privacy, confidentiality, security and fair information practices have to be a key integral component of any new health statistics system for the 21st century.
Second, is that we need to have a conceptual framework. This conceptual framework has to be integrated with the National Health Information Infrastructure which we are talking about which is a much more global and encompassing health information conceptual model. I say conceptual framework. Let me emphasize with this, as we will this afternoon, we are not talking about building a new data base. We are really talking about a conceptual framework of how information is collected and used to make health decisions, health care decisions in this country so that people can be put in a position where they can make good, healthy choices and that doesn't require a single data base. How data is accessed can be dependent upon the need for that access.
Third, the flexibility to identify and address emergent issues and the health needs of the population. Obviously, if you are in the middle of an outbreak such as they were in Milwaukee, that system has to be able to respond to that kind of thing which they have had to in the mid-1990s. The usefulness of different levels of aggregation. We tend to have a system that in many ways is a top-down system. It is designed to give us national data dn, if we are lucky, we might get some state data. Yet there are some clear examples of use of information at the community level to guide and direct community health decisions to improve the health of the community. Without having appropriate data, those kind of projects become very difficult and people in communities lose control, they don't feel empowered, they are not as committed to the change process so it is very important for us to consider the impact of those.
The fifth principle is there is a need for compatible standards serving multiple purposes. We need one set of data standards. Sometime within the next week or so, and I have got my fingers crossed, the transaction standards rule will become final. When that rule comes out, there are some 430 data fields that will be defined as a standard and that will be a big step forward but we need to continue to make sure that not only standards for the data and how it is defined but how data is transmitted, how it is packaged and communicated so that it will serve all the purpose for which it is intended.
Number six, unitary data collection for multiple purposes. About five years ago in Illinois, we started a new system called Cornerstone. Cornerstone was an integrated maternal and child health information system. What it is designed to do in a paperless way is to allow a case manager to provide maternal and child health services to a pregnant woman or a young mother and family. This system is designed to allow the case manager to do his or her job, yet is a very rich data system for analysis of what is going on, for planning. But in Williamson County which is a southern county in Illinois, there was a maternal and child health nurse who first used the system and when the client left, she commented as she was looking around her desk, she said, I am done. What she meant was there was no reports to fill out. There were not documents to complete. No time sheets to check because that was all done automatically by the system while she was doing her work. So the rich data collection which this system allows is transparent to the user even though it may go off to the immunization registry or off to the WIC system or off to the well child system. Unitary data collection, one time, she only filled it out once, but it goes for multiple purposes.
Access has to be enhanced, and access at an appropriate level. If you are a case manager, the access obviously to the information is going to be very detailed. It is going to be identified. But issues of taking that information and re-identifying, aggregating it to the appropriate level, to the community level, to the county level, to the state level, to make the kind of decisions is very important, and it needs to be easy to use.
We need to make sure we have adequate, well-managed resources, the data that is used, that is converting the information needs to have some relevance to the policy. There needs to be a reason to collect the data, not just because well, it would be nice to look at.
And, finally, we have to have broad collaboration. That has to be not only collaboration within government but within various sectors outside the government.
Where we are going to go from here? We are going to continue to have hearings. We have got two more scheduled. The third we are trying to establish at this point. After that, we are going to, with our partners, begin to look at the comments that we have received at the hearings, identify the gaps, make recommendations and issue those as a final document in the sprint of 2001.
Any questions? Okay, I think we will proceed to the first panel. Aida, if it is okay with you, because we are going to be transferring your stuff, maybe we will take you second.
DR. GIACHELLO: Yes, that is okay.
DR. LUMPKIN: Pat, will you be willing to start up?
MS. MERRYWEATHER: Sure. Thank you. I have some brief comments. First of all I would like to start off by saying that I think this is really an exciting initiative, to pull together a disparate data systems and information to really work for the benefit of the community and to provide exciting health care information for decision making and policy development.
In reviewing the proposed vision, I would just like to comment, make some general comments and then move on to some specific issues. First, I look at information development probably a little bit different sometimes, coming from a health curve perspective, a hospital perspective but also having experience in working in different settings.
The different ways we develop information are really driving some of these initiatives and some of the issues I will be addressing. First we usually have the "I have a hunch" approach where we think there is an issue and we need to research it. We have seen some exciting data bases come about as a result - the AIDS, the SDS data bases and information. It helps us target areas for health improvement as well as make some policy decisions.
We also have other areas where we don't know should we begin data collection or not? Recently there was the I-M report on medical errors and now the more recent report that counteracts some of the findings in the study.
DR. LUMPKIN: And who was the lead author on that report?
MS. MERRYWEATHER: That was out of Indianapolis. And so we really are left with where does the truth lie? Anyways, looking at this information, it leads us to a position, should we begin data collection on a national basis to address these issues? Is it necessary?
So I think we really struggle with the collection of information for different purposes and we need to make sure that we continuously assess whether the need is there for a national collection, whether it can be done on a small area analysis and results extrapolated as done in the I-M report or if even just a study, a small area study can be performed. So, again, I think we really need to look at whether we need to be collecting large sets of information or smaller sets.
As second way we develop information is almost that we have always done what we have always done so we continue to do what we always do and so we continue to build data bases and information and we maybe do some reports but we are not quite sure of the value of the information that is being derived from that data and I think we need to build into our system a way to assess and evaluate the need to continue collection of every data base that we have out there. They are costly, there are other data that can be collected, and again I think we really need to look at and evaluate and be accountable to those that we are collecting data from as well as using the resources.
The third way I like to look at the development of health care information is a did you know approach. I know that sometimes we have data bases that exist and we find different ways of analyzing the information. For example, with the hospitalization information data bases, we are seeing some trends in the admission patterns into hospitals such as more patients coming in through the ER than ever before. When I started in health care about 15 years ago, we only had about 25 percent of all hospitalizations coming through the ER. Now 40 percent of all our hospital admissions are through the ER.
There is a number of reasons why but the facts are that they are coming through the ER, an expensive route to access health care.
We can also look at ambulatory care sensitive conditions. Now, those diseases have been out there for years but there is a trend, and I know even with the Healthy People 2010, they incorporate ambulatory care sensitive conditions, conditions that require hospitalization but could have been prevented had primary care been rendered, accessible or the patient followed prescribed treatments.
Agin, what we are seeing in Illinois is a continuous increase in hospitalization for these conditions. Over 27 percent of all our hospitalizations are for ambulatory care sensitive conditions. If we take out births and deliveries, the number is even higher, as you can imagine. So again I think this begs the question of using existing data bases, really exploiting their usage so that we make sure that when data bases are collected that they are fully utilized. I know that is an issue that was targeted as one of the gaps, that we oftentimes collect data but we don't analyze data and we don't have the resources so I think any time we go into any data collection effort, we need to make sure that we have the resources available to analyze the information.
Now, there is a couple of other issues I would like to address and they focus on the cost of these data bases as well as their usage in developing intervention strategies and the development of criteria to decide when it is appropriate time to no longer continue data collection. We need to keep in mind that it is very costly to collect information. It is costly on the part of participants supplying the information as well as, and again, I am thinking more in terms of new data, new information systems, as well as those that are the repository of the information or analyzing the information.
IN health care right now, and I hope it is not that way in the future, we are dealing with a very challenging period, with the BBA cuts. It is very difficult for providers sometimes to make decisions about reporting information which we know is key to the future and key for developing intervention strategies and yet you have limited resources and you may be deciding whether to purchase a new piece of equipment or keep or retain that clinical staff person.
So, again, I think we are facing some critical periods and we always need to really keep in mind the cost of data collection.
There are many state data collection efforts occurring around the United States, and I look and I have the opportunity to see many different states that are collecting hospitalization information. I will tell you that it varies in terms of their usage of the information. There are some very rich states that use it for multiple purposes and there are some that don't use it at all. It becomes a collection mechanism, a regulatory mechanism, and I think we need to really make sure that efforts are underway so that the information can be widely used.
Additionally, we need to make sure that when information is being utilized and collected that it is used for policy and decision making and that is something that I really think we need to review is to see when information is being utilized, does it affect policy and how can we better provide information so that it can have an effect on policy.
In Illinois, we have had an opportunity to work with public health and with our hospitalization information and public health with the natality and mortality information and we have put together a community health information system. By putting this information together we are able to look at by community some health trends and make that information available to hospital clinicians, administrators, physicians as well as public health administrators. Again, it is very key information to targeting resources in a community and making sure that those that are out in the community can communicate what are the major issues, what are the major health concerns and try and develop some intervention strategies.
Additionally, IHHA is involved with Illinois Department of Public Health and Loyola Health System on a program emergency medical services for children. It started out just focused on children and it has expanded, but what is occurring is that all of these parties along with the Department of Transportation, many emergency fire and rescue services throughout the state are coming together and linking information together so that the goal is to take people entering the system for maybe the first incidence, maybe a crash, all the way to their outcome so that we can look at the type of crash, maybe some of the side issues that are involved with the crash, maybe no seat belt usage, increased maybe alcohol involved and taking that patient or taking that care all the way to the cost of care and the outcome of that care. Now, again, that is an initiative underway but it doesn't come easy. It has been many years in development. It has taken dollars and resources to build this information system it most importantly has taken the ability to build a level of trust among the participants. That is so key when you are linking information is to have everyone as an equal partner at the table and making sure that everyone is satisfied, building consensus along the way.
I have long applauded the people that have worked on this because, again, it is not an easy task.
Now, when it comes to linking information or making any information available, I think the issue regarding confidentiality is on everyone's mind. The issue is always of the highest priority and we always stop and think how much protection is adequate and how can we insure that patients' protections are being maintained? It is of increasing concern to health care providers, especially when we are in an era when there are an increasing and alarming number of people without health insurance. We need to make sure that we exercise extreme caution to insure that protections and policies are in place to avoid release of patient sensitive information and that no particular geographical area or population are red-lined or kept from obtaining health care information or coverage.
I know some data and information exists already but again I think we really need to safeguard the information so that we don't put anyone in danger of obtaining health care insurance.
Now, addressing some specific trends. In terms of the socioeconomic, demographic and environmental factors, I oftentimes question whether one can extrapolate based upon a community some of the economic status and educational information and I think it becomes extremely difficult to collect economic information on people, especially when their status changes from time to time unless it is on an ongoing basis.
When it comes to, and I think Dr. Lumpkin addressed this issue, the racial and ethnic group status and composition, it is especially challenging in these times as the melting pot continues in the United States and you have such blended populations. But I also think in looking at health information that there is a lot to be learned from having this set of information and to tracking different types of diseases.
I question why there is a lack of response with the census 2000 and I know in Illinois, especially in the Chicago area, there has been a great significance, the lack of response, and we need to figure out why there is such a lack of response. Some people have said it is become of confidentiality of information. They didn't feel it was relevant to report that information. Again, I think this is focused on some of those issues that we are trying to address in this session.
The health of populations is currently based upon surveillance, vital health statistics and hospitalization data. I think there is a lot of information that is missing and that can be, as Dr. Lumpkin talked about, the behavioral risk survey every four years. Should it be more often? Do we need to get information on clinical visits? For example, if we are looking at increases in ambulatory care sensitive conditions, are those patients that are being seen outside of the hospital setting? Are there sufficient resources available?
When it comes to looking at the health care delivery system, there is a demand for information, whether you are a consumer, a health care provider or insurer or purchaser, everyone wants better information and when it comes to looking at quality and outcomes of care, this is a very perplexing area for health care providers right now. Everyone knows there is probably some way of measuring it, not exactly scientific but there is some way. For example, I always tell my friends the best way to look at it is when they come and say well, if you were having this procedure, what hospital would you go to or what physician or what health care service would you access.
As health care providers, we sort of know but we don't know why we know. We know just based upon some anecdotal information as well as maybe some basis of fact so we think there is a way of capturing that information but we are not quite sure how best to do it. I know there are many initiatives right now on a state and federal level and private level that are out seeking to collect outcome measurements. I think this is where the frustration is among providers is right now. We have federal initiatives, we have private initiatives. They are competing. They are not working together. It is frustrating because in some respects you have to report to all of them and we can't get the same parties at the same table. We can't agree on definitions, we can't agree on measurements and we can't agree on outcomes.
So, again, I think this is a major area of concern is that we need to get these parties together. There is a lot of resources being wasted right now by them not coming together and providers are concerned that in about a year and a half or less than a year, they have got to make some big decisions as to reporting that information.
Now, when it comes to public policy and efficacy, I agree that there needs to be more community-based information. I think part of what we are experiencing with legislators and elected officials is that we have national data which is wonderful. The Healthy People 2010, the targets, some of the objectives, the measurements, but we don't have anything we can take back to our local legislators and make it real to them and that is what they oftentimes want to know. How does this affect my community? And so I think we do have to do, not just from the top down but we need to have that information from the ground floor.
When it comes to information technology, I think that is far outpacing the ability of health care providers and consumers to take advantage of some of the advancements. I think that we have collected a lot of information. There are resources out there but as we all know, it is a very difficult position for providers as well as any type of health care organization to put information ahead of patient care.
In negotiating boundaries, I think in Illinois we have been successful in bringing together some of those boundaries. There is still a lot of work to be done, but we at least have laid the framework. It does start by building trust and I think the sooner you can get more parties together, more parties collaborating and the value of that collaboration being profiled, I think you will end up getting rid of all those silos and maybe more linkages out there.
In terms of data quality, undoubtedly there is a lack of consistency, a lack of standards that exist right now. I think we look forward to HIPA(?) In terms of the standardization data it will bring and the ability to do comparative analysis and to, finally look at what is going on on outpatient surgical procedures and have one set of codes and that be working with two different sets of codes. I mean, there is so much value to that information.
We cannot underscore enough the need for research analysis on this information and for feedback to anyone who is providing the information. I think we always short ourselves when we look at data collection efforts. We collect the data, but we don't build in enough dollars to analyze the information and I think again that is where we are building this information, wonderful data bases, but we don't have the resources available to analyze it or the ability to access that information for analysis.
I think we should never lose sight of the importance between the bridge between data and information and that we should always hold ourselves accountable to insuring that information protects individuals, that we make sure it is timely, relevant, cost effective and is used effectively for the improvement of the health status of the populations we serve.
I think this is a wonderful opportunity to pull together different data bases and different entities and I commend NCVHS for shaping this vision.
(Applause)
DR. LUMPKIN: Thank you. What we are going to do is hear from Aida and then at 10:40, Jennifer will be calling in. Evidently the storm that kept her from leaving from Detroit to getting here has probably just arrived in Detroit so she will call in and we will take questions of the panel as a whole. If we have some problems with Jennifer, we may then will take questions from the folks here until we get her on the line. So, Aida, welcome.
DR. GIACHELLO: Good morning. It is indeed a pleasure for me to be here and I am very excited as well. Let me make sure the computer is set up. While I do that, I would just like to always say that I, as a Puerto Rican, I always speak fast and when I have too much to say in a short period of time, I go faster. And sometimes I switch into Spanish or something else. So bear with me, now that we are talking about a world culture competency as you accept me as I am in my fallible speaking.
But anyway, what I am going to be doing, [TAPE CHANGED] in that process to share some additional concerns and challenges regarding a trend and yes, shaping the vision for the 21st century and then in that process I will be sharing some additional recommendation.
I wanted to begin by really acknowledging the committee for their work. I was extremely impressed when I was reading the report. They were short and sweet, straight to the point. I really like the fact that they were able to obtain a national consultation in this process and that many of the issues that we have been advocating for for the longest time appears to be documented in the document. I was very excited with that and I really want to commend your work and to really believe that there is all kinds of exciting things that are happening and I am happy to be part of this process this morning talking to you about that.
For those of you who know very little about me, I just want to briefly give you a little bit of background.
I am at the University of Illinois, Associate Professor, at the College of Social Work, and I direct the Midwest Latino Health Research Training and Policy Center which is a multi-disciplinary center established in 1993 as a result of the Federal grant from the Agency for Health Care Policy and Research and most of the work we do is in the area of chronic condition outcomes research, heavily focusing on diabetes, asthma, hypertension, cancer, maternal and child health and more recently moving into clinical trial activity.
We also follow a participatory health research process of modeling, most of our studies, and we truly are committed in training new minority investigators and training community organizations for that matter in the process of conducting our work. I do have some handouts of my presentation that I will give at the end.
In terms of the minority training, we have trained over 145 minority persons, Most of them are students that range from high school into undergraduate, graduate work, pre-med, as well as practitioner in the field and we are currently doing nationwide training heavily on clinical guidelines and many of the activities that are emerging from our own research work. We also engage in policy work.
In terms of the challenges ahead of us, one of the concerns I always like to raise is the whole rapid population growth of racial and ethnic minority and that our data system from my perspective is still ill-equipped to capture the growing and challenging in terms of health and social needs of this population and just basically to document that as some of the data we have, put them in our data based on the census protection indicated that already we have a 35 percent change, particularly of the minority population between 1980 and 1990 and then again close to 34 percent between 1990 and 1998 with the Hispanic particularly in Asian-Americans representing the faster growing population group.
We also know that in the case of Latinos, because most of the issues that I will be raising have to do with the Hispanic population which is the group I heavily focus on in my research although I do collect data on African American and other groups but one of the challenges we have is that the Latino population is growing so rapidly in areas that traditionally they were not really concentrated and those kinds of communities, in this case states like Arkansas and North Carolina, Georgia, you name it, are really confronting a very severe problem because they are now trying to serve a population for which they know very little and for which the data systems and limitations that were outlined by Dr. Lumpkin in the beginning is a very serious problem in those communities.
And here in Chicago, although Latinos tend to concentrate primarily in the Cook County area, there are other suburban areas like Des Plain. We just completed a study there among Latinos and the problems that some of the suburban communities are confronting, they have a huge influx of Spanish speaking Latinos even in the high schools and they just cannot figure out how to communicate and how to provide culturally sensitive services and some of the things we obviously are doing is providing those kinds of assistance upon request. And obviously in terms of Latinos, you see them concentrated in a number of other states to the point, and most of the data we have available indicates that the Latinos would represent at least 13 percent by the year 2005, close to 19 percent by the year 2030, 22 percent by the year 2035 and one-third of the U.S. population by the 2100. Some of the figures that the U.S. Census indicate or project, says that by the year 2100 there will be about 190 million Latinos in this country.
So in reality, traditionally we thought that when we addressed the Latino issue, we were focusing on the issues of the Southwestern states or New York City or perhaps Miami or Dade County, now it is an issue that we as a community, as a society in general, have to seriously address and the data system in place is now really providing us the kind of information that we need for meaningful planning, for meaningful evaluational programs, for even policy formulation.
There is more data recommending that. The other issue in that process of dealing with the challenges is the growing elderly population, not only Latino but minority elderly population and we still, in terms of data and research, we know very little about the needs of the elderly population because they tend to be generally a younger population so we tend to collect or focus more of our attention and resources in addressing or documenting those needs so the younger population and now that we are, you know, confronted with a large increase, at least by the year 2025, of minority, we still have a lot of way to go to be able to do that well.
Another issue is that the data system and data collection strategy in terms of data collection and data collection strategy is that it does not capture diversity among minorities. This was also alluded by Dr. Lumpkin earlier, and it is obviously particularly true among Hispanic Latinos, particularly when you look at the Hispanic population, we are talking about a group that comes from more than 20 countries. It is again the American society who wants to perceive us as a homogeneous society but one of the fastest growing groups are people that come in from Central and South America. And we just don't know anything about it.
Recently I was asked by the National Cancer Institute to write a chapter about the cancer issues and needs of women of Central and South America. I had to go back to the Pan American Health Organization and find out what are their needs in Central and South American countries to be able to predict what is going to be the trend in terms of cancer rate for those particular populations so again it is a very serious problem that we have.
Some effort has been made in improving the data system but again, even when you look at the HANES III, the HANES III at the national level included only Mexican Americans. It did not include Puerto Rican, it did not include Cuban and other groups that are growing very, very rapidly among this particular population as some of the data here indicates.
And then there was a tremendous amount of diversity. I am not going to go into details now about levels of acculturation but by citizen status, by language use, by recency, you know, length of time in the community, et cetera, et cetera, and the kinds of data we need, at least at the local levels to be able to assess what are the needs of the target population in question that we are serving. If they are recently an arrival, we need to engage in different processes and some of the things as I research, I have constantly to be doing primary care data, primary data collection because at the local level, I just don't have the kind of information needed, not even to support application to grants where you have to clearly delineate the needs of the particular target population because of the diversity, because of the data system, not having the kinds of information we need to document those and how different factors such as immigration push and pull factor impact also the health status of many of the population.
And then in terms of socioeconomic information, most of the data systems doesn't really provide the kind of information that would allow us to really have a better understanding of the needs of poor communities and even when we try in our own studies to include data on income, for example, we have given up on the income data. First of all, the data is so poorly provided by the participants of any survey. Lately what we are doing more heavily is trying to come up with other indicators, what are the percentage of people who participate in Medicaid programs, in WIC programs, in food supplementary, things that would indicate the general socioeconomic status of those populations because the data on income is very limited. It is not complete; it is not accurate and we just cannot hardly do very much with that data overall when we collect them.
This is a very serious problem and now that we are dealing with the social disparity which is ow the new movement that is emerging in terms of providing services or assisting and addressing the needs of minorities, we really need better socioeconomic and demographic characteristics to be able to understand and plan.
Obviously, this particular chart provides a number of factors for poverty rate among Latinos that again varies by the Latino subpopulation with the Puerto Rican experience being close to the African American experience now in terms of socioeconomic and demographic characteristics but also in terms of health characteristics, the health profile of Puerto Ricans is closer to the health profile of the African American in this country, has to do with the whole history of oppression, the whole history of racial and social discrimination.
And by a mental factor, again, we need a lot more information that could help us document the environmental factor that impacts the health needs of Latinos as a whole and the Latino community in general. Some of the risk factors here, children they have elevated lead levels, family lives in neighborhood near toxic waste dump. We did a study recently, not recently, two or three years ago in an island community where the community was concerned about a number of symptoms and chronic illnesses that were associated with the refinery industry in those communities and we came there to try to document through a household survey some of the environmental factors. And actually as a result of that we were able to use the data, organize and mobilize the community into a coalition that later on lead to a lawsuit and now there are a series of other things that are happening possibly as a result of some of those efforts.
Another concern that I have is the data system consistently excludes Puerto Rico and as a Puerto Rican I am very much concerned because the health status of Puerto Ricans in the island of Puerto Rico is close to the third world countries in terms of high infant mortality, high diabetes prevalence, asthma, HIV, you name it, violence, drug addiction, and even in Puerto Rico because of a lack of limited resource available, their infrastructure is very limited to document the need. When we tried to do a comparative study between the Puerto Ricans in Puerto Rico and the Puerto Rican in the mainland, we find a tremendous amount of gap in trying to do justice to that.
A clear sample here when you look at prevalence of diabetes among persons 18 years of age based on the behavior risk factor from CDC, the island of Puerto Rico had the highest prevalence of diabetes of type two when you look at regional data. However, those kinds of transit patterns get lost if you don't have those kind of information that could help you better understand what is going on.
The data system, again another problem is it doesn't allow us to examine the process of acculturation and how we affect the health of Latinos. Most of the studies, you look in here, some data on maternal and child health indicates that in terms of birth to a married woman, for example, is much higher if they are born in the U.S. versus born in the country of origin. Some of the Latino researchers argue that acculturating into the US lifestyle is danger to your health because you tend to get worse, your health is going to get worse in every single indicator. Here you have data in terms of teen birth. Again, very high among those born in the United States versus those born in the country of origin.
So we always have to try to figure out ways to manipulate the data to give them kinds of information that would help us understand what is really going on and come up with the kinds of community intervention to address the problem and again other studies have documented the same effect of acculturation in a number of other areas now in maternal and child health but in areas of cancer, areas that has to do with the lifestyle like obesity, higher smoking rate, alcohol, et cetera.
We need more and better data on structure and condition impacting health. Type and location of employment, particularly with the migrant. What kinds of pesticide exposures that are involved. There are all kinds of things that we just don't have ways to collect the information properly and be able to develop some kind of rational processes to impact public policy in those kinds of areas.
We need to improve the collection strategy. Most of the health data systems, as I mentioned, are poorly equipped to provide information on the health status of Hispanic Latinos. There is insufficient identifiers for the different subgroups, some of the data incomplete. Some of the data from managed care systems do not collect data on demographic and socioeconomic characteristic that I said it was critical in terms of addressing the needs of the Latino population and although the proposal for infrastructure that will be discussed this afternoon may provide some relief, we have to obviously put in place safeguards in terms of confronting challenging issues to make sure that the kinds of strictures that is under consideration would not really cause more harm to our community.
More needs to improve data collection, starting, for example, we need to monitor trends over time at the national, state and local level. There is a growing socioeconomic inequity and worsening of health among Latinos. The data is critical to identify points of intervention. We need to monitor and enforce Civil Rights Act. There is a lot of discrepancy between self-identification and observer identification and you have that particularly a problem with mortality data where funeral directors who, when they fill out this form, usually engage in a tremendous undercount because they rely more on the observation rather than trying to gather information from a family member on the ethnicity of a person who is, who died.
Changes in preferences, I mean, Latinos may not be debating with the whole issue of Hispanic versus Latino. And what we have adopted based on the Surgeon General Antonio Novello in 1993 was to use both terms to refer to the same population. So there may be in the next year or two changes in which term we are going to use and how we want to label ourselves. It may have an implication in terms of data systems and comparative kinds of studies.
Again, the whole issue of having separate questions on race and ethnicity is critical. We have found that we need to have a question on ethnicity first if we want to gather some information on Latinos. For example, some of the information available indicates that there is a non-response rate that is very high on Latinos. It could be as high as 36 percent according to some of the national content data and 40 percent of Latinos tend to select the other race categories when the race question is only asked in most of the national and local surveys.
So we need to correct that so we could be able to find out better how to analyze that data so when you have information under the other race category, it really doesn't really tell us much about what is going on or do we know again the 40 percent of those under the other category tend to be Hispanic so there has to be a better way to collect that information to minimize those kinds of inconsistency.
Misclassification of race, again, you know, leads to the underestimation of death rate. Issues of comparing race like again with the census undercount which is greater for racial and ethnic minority. We need to take that into consideration when we are using the census data.
I know that you are going to be talking this afternoon about the National Health Information structure. I truly support that particular effort, particularly because I am aware of the Cornerstone system in Illinois which is a wonderful data system and we use it particularly in our studies on diabetes because it has a diabetes module and so I saw this infrastructure as even a much larger expanded vision coming from the Cornerstone data system. I don't know if you agree with me, but that is how I was looking at that when I read the report.
Again, the reports that were provided addresses security, confidentiality, standard protocols and data elements. However, we should be careful how much data falls into the hands of big insurance and managed care businesses, especially now that we have moved into the new genetic era. These organizations which have the capital to build the infrastructure around their, not necessarily their public health, we are going to find a lot of challenges that we need to have some clear safeguard to address them.
The report indicates that the new infrastructure would bring down minority disparity. This is not likely for several reasons. This population are characterized by low technical literacy level, lack of insurance coverage, language barrier, lack of telephone survey and in some population, rapidly shifting residential and employment mobility.
Also, you have the issue of the undocumented non-resident worker which would clearly be left out of this infrastructure system that is being proposed and for which we need to figure out ways to make sure that they get included in whatever system that would be implemented.
Also the National Health System Infrastructure simply will not be able to purchase and maintain information, access advice like cell phone, computer electronic and this is particularly the truth of the low public health system that doesn't have the resources and people who then would be able to access their information.
Building a public health community component will be extremely difficult under this new structure as well. The state and local health departments are barely able to keep up with basic advances and most of them lack the personal capacity to implement use and analyze what they have. At the community level we encountered more barriers, technical and financial. Most legislatures are likely to lay out funding for this improvement.
Other recommendation is that together with the data improvement, we have to figure out a better way of recommending access to health care, even when you look at the lack of health insurance coverage, the percentage varies depending on the data sets and we have to figure out a way that you would have more consistent information not in terms of health insurance but in terms of percentage of people with a regular source of care or experiencing any other type of inconveniences in obtaining care and here is just some data that I provided on lack of health insurance which you would have in your handout that illustrates some of the points I am trying to make.
So therefore there is more funding that needs to be provided to public health activities overall and to public health data systems. Again, most of the funding in this country, as many of you know, is primarily aimed at medical care when 70 percent or most of the premature mortality are due primarily to environmental and behavior risk factors. So we need to mobilize effectively to make sure there is more resources into public health.
We need more stronger government and private sector commitment at all levels to improve data and now that we are dealing with health disparity, I mean, some of the argument is that we need to work beyond the Department of Health and Human Services but to have all the key departments that is going to be instrumental in collaborating with data systems that would help us to understand the impact of other elements like education, housing, employment, et cetera.
And then we need better implementation of the impact of race and racism. Most of the minority investigators are really looking at the impact of race and racism on the health of minorities. In the case of Latinos, this particular study from the Alcasor(?) Family Foundation Survey are already starting to document the fact that Latinos are aware of the kinds of racism and unfair treatment that they experience as a result of their ethnicity so we need to plug that into some kind of systematic way so we can have a better understanding of the impact of race and not only race but sexism and other aspects that unfortunately of our integrated was part of the health care system.
The data system, and perhaps the infrastructure that is being suggested could help us with the improvement of the quality of care. Some of the studies that we have done in the Latino Research Center clearly indicate that the physicians and other providers serving our communities are not really familiarized with clinical guidelines on the management only of diabetes or the management of asthma. We need to provide more information consistently so that we could be able to begin addressing those kinds of the fact that they are not getting the optimal treatment and that could be one of the major factors for why their health is not improving at the level that is expected. This particular slide just provides some of the data in terms of some of the studies, asthma treatment variation that clearly documents how African Americans and Latinos base on the series of studies that we did accessing patients in hospital emergency rooms in the Chicago area. The people who had a regular source of care were ending up in the emergency room and when we started looking at the kinds of quality indicators for asthma control and management, we realized that they were not getting the proper medication. They were not getting the proper education.
Again, now that everybody is talking about the health disparity and there has been a number of areas that have been defined, we truly believe that even to address some of the disparity and one of the examples that I provide here is the Rich Project, funded by the Centers, they are the first ones who are already moving the trend into looking at how can we change social norms, how can we be able to produce changing targeting not only the health system for looking at the Health and Human Services overall and how to be able to have those kinds of interventions in producing community social norms of changes. How we need different kinds of data and in the case of the Reach 2010, they are encouraging and providing funding for us to engage in community need assessment because the kinds of systems available will not give us the information that we need if we want to have a more comprehensive systemic changes at that level.
Here again we need to increase the amount and quality of research on Latino. Many of you have heard from me that I am very critical about how research in this country is done on minorities. Research is usually done by people who are not minorities on minorities, people who have little cultural understanding, sensitivity who even had a middle class mentality and as a result the kinds of research that is done in our community are research that reinforce that there is stereotypes about the health of minorities and as a result reinforce the whole system of I believe of inequality in this country because it stresses the cultural deficit model in a victim-blaming etiology and the research process has included methods of observation, criteria for evaluating past impurity that intentionally or unintentionally have been designed to justify pre-conceived ideas and stereotypes of people of color and consequently has reinforced in our society the traditional patterns of power status and privilege.
That is one of the reasons that I am very heavily committed as a minority investigator to train new minority in the area of research because we know how critical is research for public policy and the research that is being done in our community doesn't really help us not only to solve the immediate problem but even worse, it really reinforces the whole system of inequality.
And obviously, not that the report even mentioned systems like the children's health insurance and how that is critical to understand where we are in terms of providing services to our children but we need more and better dat, not only on the children's health insurance that has from my perspective serious limitations but also on welfare reform and immigration reform, affirmative action, child care legislation, a series of other initiatives, public policy initiatives that is going to impact the kinds of data that we need to collect and monitor and evaluate in terms of intervention and they also open up a whole series of other areas that we need to seriously consider in this process.
And then in conclusion to improve data and collection strategies systems and to better document the health needs of minorities and Latinos specifically, we will require a comprehensive and coordinated approach working with Health and Human Services organizations and with commitment from different levels of government and the private sector. We commend again the National Center for Vital and Health Statistics for their effort. It is, I believe, long overdue. They should be commended for this vision, for putting the interim report together so concisely.
However, as well as a conceptualized system, it will not remedy some of the main issues of the public health sector such as the lack of system in some areas or the fact that they confront a serious problem because of socioeconomic, labor market, legal issues as well as the lack of universal access to health care.
While privacy is important, we should expect to waste an ordinary amount of time selling a national information system to different civic liberties sectors. Data quality also will continue to be an issue. For example, this classification as I mentioned earlier of ethnicity, race, is a problem although social systems will eventually pick up those areas however burdensome system, incompetent or heritage like in the case of data entry with personnel could perpetrate error.
And finally in improving the data collection system, we need to learn from the challenges that the Census 2000 is experiencing regarding the response rate that was alluded earlier. People just didn't, you know, the experience we have been observing based on the media and other stories is that people just couldn't deal with the long forms that were sent to them or they didn't understand the questions or felt intimidated or felt it was invasion of privacy. They felt they were not going to have time or patience to respond to the many questions and they thought of their income, et cetera, and other information is not anybody's business.
So we have to learn from those kinds of experiences that is happening currently to also take those in consideration as we try to improve data collection overall and data systems particularly pertaining the minority populations.
Thank you.
[Applause]
DR. LUMPKIN: Thank you. Welcome. Can you hear me?
MS. LAFATA: Barely.
DR. LUMPKIN: Through the wonders of modern technology, we have you, with your slides on the screen.
MS. LAFATA: I talked a couple of weeks ago to a group of Korean dissidents who were visiting here and after every line someone had to translate. The Koreans were a group, at least I could see some faces. This time I have nothing for feedback so please, if people want to stop and ask for clarification, don' FACE="Courier New">t raise your hand but yell I guess.
What I was asked to talk about, and I am sorry I didn' FACE="Courier New">t get to hear the earlier people, the trends and gaps in shaping the vision, if you will indulge me just a few minutes and if you can go to the first slide, what I thought I would do is tell you a little about the perspective from where I come. I have about three slides quickly here just to tell you about the Henry Ford Health System.
This first one should have a picture of our flagship institution which is the Henry Ford Hospital. We are an integrated delivery system that has a trifoly mission. That is, first and that is the large wheel of our bicycle which is patient care, but then we also do research and training in education here. As I said, the flagship is the Henry Ford Hospital. It is a 900-plus bed tertiary teaching facility in downtown Detroit. We also have the Henry Ford medical group which is a 900-member salaried medical group and Health Alliance Plan which is somewhere between a half, I think they are at about 572,000 members now, mixed model HMO and then a whole series of other organizations, other hospitals as well as medical groups that are affiliated with us.
The next slide shows the Henry Ford patient population. Our core group is Health Alliance Plan which, as I said, it is about 572,000 members and then the Henry Ford medical group which provides care to about a third of the patients in the Health Alliance Plan but also to patients through a variety of different insurance mechanisms, bringing our total lives to about 862,000 that we touch each year, about 20 percent of the Southeastern Michigan market.
So on the next slide, here we start getting into information on data. Where I sit, life looks pretty good from the data perspective. The medical group maintains some fairly comprehensive data bases on every patient that sees a Henry Ford medical group physician, gets assigned a unique ID number and medical record number which then is used to link all of their utilization within the medical group and if they are a HAT member, in the HMO as well.
There is a panel management file that links our patients to primary care clinicians, has a couple of registries in it, disease registries. There are administrative encounter data through the medical group so that every time a patient is seen by a physician, we know what was administered to them and unlike in some of the other staff model HMAS which people may be familiar with where capture rate on specific procedures is less than ideal, here because the medical group often sees a large fee for service population, at least in theory we are capturing at the procedure level, at the billable unit level, everything that is going on.
We have an automated clinical management information system that has information on lab tests ordered, who ordered them, for what patients and when, data as well as the test results. That, as I said, is all electronic, and then we have a cancer registry that is linked and is actually used to build the SEER which we are a part of here.
And then on the HMO side, we have membership files that cover all of the membership and we have claims data. That data is more or less complete, depending upon who is bearing the risk so it is some of our contract. If a medical group is fully capitated, we might not have as detailed information but for others we would have complete information including prescription drugs.
The next slide is the final one here which just says what that means in terms of our capabilities within our health system. We have complete data back to 1994 for some things like prescription drug use and outpatient encounters with a medical group. It actually goes back as far as 1990 and is fairly accurate that far back.
As I said, all data can be linked using unique identifiers so we can link patients, physicians and clinics so you can know not only who is ordering care but in what setting and then data can be aggregated, data at the patient, physician, clinic. We have regions here that are administrative units that make little sense outside of us but within here for tracking what is going on, the region or the health system level.
And then finally, our data is updated worst case scenario monthly. Some things are updated nightly and there is really no more than a three month delay when things become available. So it is a fairly rich environment in which we live here in terms of data systems and with that in mind, and I was sort of told the floor was wide open for what I could talk about with the report, so the next slide is a proposed 11th and 12th principle and these were to be added to, I am just slipping in this report, I can't remember what page the principles were on, fairly early on, page 4 and 5 of the report, I thought an 11th principle that might be considered is that data must be available in a timely manner so that it can be useful and relevant to decision making on health and then the 12th principle is that the accuracy of the information compiled must be continually addressed.
In some of the work we do here, we try to work out when it is feasible to be using our automated data systems and when we would be better off to be in the medical record or somewhere else.
Then the rest of my comments are really centered around the current and emerging health issues that were outlined in the report as well as the health information needs associated with them so there should be a slide up now that says socioeconomic, demographic and environmental factors. One of the things I thought might be worth adding to the list is some information about the knowledge of the burden of illness to patients, their families and support networks so that we could understand better the relationship of health to employment and under-employment to the receipt and provision of care, how the burden of illness changes with health status and over time and by population subgroups. This was sort of getting at the notion of where it is health, both the health of ourselves and our families fit into this busy life, that more and more of us are leading in this country and as we try and push things into outpatient studies so that more care is being provided by our networks, our support systems, what is the impact there.
The next slide is the health of populations. Here I know there was some mention of comorbidity so what I am really doing is emphasizing the importance of that which is that we really need to have information on the presence of multiple conditions. I mean, we struggle with that here in how to do disease management. If we have a patient with heart failure who also has diabetes, should they be in a heart failure program or should they be in a diabetes program or do they need to be in both and if they are in both, how do we coordinate care. So I think we need additional knowledge on the interaction of multiple conditions and the role that the environment plays in the manifestation of health among multiple conditions.
The next slide should say health care, health services delivery and health care seeking. One of the trends that I thought could be considered is this increasing expectation and I would argue that it is an expectation on the part of both providers and patients for patient input in treatment decisions and there are a whole series of questions there that I believe are going to become more and more important. Things like what are patient preferences regarding such input. One that is not listed on the slide would be what is the impact of this input on health.
Third, when given the option, how to actually make a decision. I mean, do they go get a second opinion from another provider? Do they turn to their aunt who is a provider? Do they do things on their own? And then what are the patient's different capabilities of making decisions and what decisions are, at least what could be labeled informed decisions being made?
The next slide should say health care, health services delivery and health care seeking. This is where, there was a note in the report about the importance of understanding the population of health and relative investments in primary and specialty care. While I think that is important at a macro level, I think there is a whole other level of questions that don' FACE="Courier New">t get addressed at the macro level that I would argue are perhaps more important and that is the question of how to structure care delivery processes to insure the provision of appropriate care regardless of the provider type or even regardless of the setting. I think the reality is that primary care and specialty care are both here to stay as are fee for service and capitated care. What we need to work out is how do we build delivery processes to maximize the health within those studies.
Is the next slide on risk assessment? I think I changed the order here. This one is sort of, I don't know quite where to put this one but it falls under the health care, health services delivery and health care seeking thought which is that one of the pieces of information we are going to need is information to allow risk and severity assessments to allow for comparisons of the effectiveness of different interventions.
So scientific research. I think here I would actually focus on what scientific evidence has been translated into practice, how do we know what evidence is in place and what is still sitting on the shelf collecting dust and then what are the effective means of disseminating and implementing processes of getting research findings into practice, both in terms of alternative environments and settings and alterative populations.
And then the public policy and advocacy topic. This is where I think because there are some specific, some vocal groups, some interest groups that have been very vocal lately on their agenda items, it would behoove us to understand the priorities and preferences of the general population as well. And then second, and I am not sure that this fits under here but I couldn't think of a better place to put it, but one of the things I think is useful for us to understand is what the influences of reporting mechanisms and report cards, things like HEDIS that really drives some of the priorities that we see in the area of health these days and understanding not only what the impact of these priorities on themselves but on what gets missed out so the question becomes are people studying for the test or are they really tainting the underlying processes? I guess this is just a warning to not only do the things that are today's hot topics but to make sure that we measure and have information on things that are reflective of the entire spectrum of health.
In terms of information technology, this is just a plug again for the 11th principle that we need ways to assess the accuracy for data for different applications. Those applications can be those that were intended originally as well as unintended and then highlighting the importance of the notion of linkages which was already mentioned in the report.
I have a conclusion slide because I thought I should have a conclusion slide but I have to admit that I had a hard time coming up with what it should be. I really think the key principles here are insuring that we have accurate information at the right time which means more quickly than we have historically seen things available for public use and that things are collected after carefully thinking through both the macro and the micro policy issues that are likely to be addressed.
DR. LUMPKIN: Thank you.
[Applause.]
DR. LUMPKIN: You did a wonderful job considering that you were not here to see everybody grimacing.
MS. LAFATA: Not a clue now.
DR. LUMPKIN: You complete this panel, and I thought maybe we would ask for questions that may be directed to you first. Are you at the airport or back home?
MS. LAFATA: Oh, no, I am back at the office.
DR. LUMPKIN: Okay, and then if you want you can hang on as long as you want. Are there any questions?
DR. STARFIELD: I am Barbara Starfield.
DR. LUMPKIN: Richard and Barbara, you may want to introduce yourself just for the recording so they have your voices.
DR. STARFIELD: Okay, I am Barbara Starfield from Johns Hopkins University, a member of the committee.
DR. HARDING: And I am Richard Harding from the University of South Carolina School of Medicine and also a member of the committee.
DR. STARFIELD: I want to thank you for your presentation, very enlightening. You have a lot of experience with data. In one of your slides you mentioned that your data are aggregatable to various levels. I wonder if you could tell us first of all what you mean by regional systems and second of all, and more important, what data do you strip off as you use larger aggregations for purposes of privacy and confidentiality if any.
MS. LAFATA: I am sorry, I really can't hear.
DR. STARFIELD: Let's try again. How are we doing now?
MS. LAFATA: That's great, thank you.
DR. STARFIELD: Okay. I appreciate your presentation. It was very enlightening. You have a lot of experience with data. In one of your slides you talked about aggregating to various levels - patient, physician, group, region and health system. First of all, I wonder if you could explain a little more what you mean by region and health systems. Second and more important, what data do you find you need to strip as you aggregate to larger and larger levels for purposes of privacy and confidentiality if necessary.
MS. LAFATA: There are a couple of ways we define health systems. The region really refers within the Henry Ford Medical Group which is what I would say is one of the ways we aggregate the health system. At the health system level, there are two main groups that we can aggregate to - the health alliance plan and the Henry Ford Medical Group. If you are taking a purist perspective of our health system, is not really the intent. Neither one alone represents the entire health system.
The group that overlaps there, the Henry Ford Medical Group patients who have our HMO insurance, Health Alliance Plan, that is the population we use most often for research purposes because that is the group that we have the most complete picture of their health care utilization because we know all the care that the medical group delivers to them and any reimbursed care they receive under their HMO coverage that was not delivered by the medical group.
So when I say health system, that is about where we get to with any level of detailed information. We can do other things in other places so we can do things at the hospital, some of our other hospitals that probably we don' FACE="Courier New">t have an automated data system for but it is the level because it exists there.
Then, with that in mind the region is really within our medical group there are what used to be five administrative regions. Over the last couple of years they have dwindled to three so we now have three larger administrative regions. They are geographically based regions of primary care clinics which have for reporting purposes medical directors and various administrative counterparts.
Did that answer your question?
DR. LUMPKIN: And when you aggregate the data?
DR. LUMPKIN: Oh, the identifiers. It depends for what purpose we are doing things because we are all in-house or at least I am in-house so when I am doing things. We do, for research purposes, we don't include Social Security number information, patient name or contacting information in our analytical files. We go to a unique WID but we haven' FACE="Courier New">t stripped additional information off. I am trying to think what other research things we have done. You know, for some interventional studies do here which is a little different than what the purpose of this conference is, we clearly have to maintain some contact information. But all the data stays in-house behind our firewall. If it goes outside of our firewall, then we definitely take the contact and identifying information off.
DR. STARFIELD: What do they take off?
MS. LAFATA: I guess sometimes we convert date of birth before we send it out.
DR. LUMPKIN: So the, any other identifiers you strip off? You contact information, you mentioned Social Security number.
MS. LAFATA: Name, we don't strip out our unique ID number either, the medical record number that patients are assigned here.
DR. LUMPKIN: Thank you. Any other questions? We are going to leave you on line as long as you try to hear. We are kind of in a huge ballroom and you are sitting right in the middle and we are hoping the amplification will reach you.
MS. LAFATA: Okay, thank you.
DR. NEWACHECK: I want to thank the panel for an excellent series of presentations. These are very helpful presentations. I have a question for Patricia Merryweather. In your presentation, a couple of points. You stressed the importance of building a level of trust among the participants in developing a coordinated data system and one of the problems at the federal level in integrating at least federal statistical systems is there is often turf issues that come up to block that or to at least slow down the coordination effort. But it sounds like you have had a little bit more success in Illinois and I wonder if that is true and if so, are there any lessons that might come out of the experience in this state?
MS. MERRYWEATHER: I think it is especially challenging when you are dealing with private organizations and public organizations and so what we have decided to do is the association still services its hospitals in terms of hospital-specific comparative information but at the state level we have built a community health information base and that is where it is targeted towards the community and the information is more health status information as well as disease specific. So I think we have gotten over that, and we actually, I think it is about five or six years ago we kicked off a series, a televideo conference where Dr. Lumpkin and our CEO, Ken Robbins, laid out to all hospital executives and public health administrators that even working together we cannot resolve all the health care issues. So let's find common ground and work together on areas that we know together we can effectively make some changes but then where we disagree or where there is issues like that, to again work through those issues over time but to find common ground.
Again, when you look at people that get into health care and I say this all the time, you can't be in health care for the money. At least, when you are working in a hospital clinical setting, public health, you are not in it for the money. You are in it for the common good. So if we put and focus on those issues, I think that is where you can develop trust and providing feedback, getting information back to people in a timely manner makes them more accepting and more prone to participate in those future initiatives so I think that is where it needs to begin and I agree, I think there are turf issues. I know we see at a national level when it comes to quality of care and measurement reporting and it is frustrating for us because again, I think if we can get beyond that and try and look at what we can accomplish once we have that information and that is where our energy should be.
DR. LUMPKIN: I just have a couple of quick questions. You mentioned that you spent a little time talking about the burden of data collection. One of the pieces that will be part of the HIPA legislation of course will be the setting up the mechanism for electronic data interchange. If the health statistics system is set up in such a way to receive data like through EDI, do you see that this added capability to hospitals that, say, try to come in compliance and do electronic transactions with their payers will provide a vehicle for us to get electronic transactions for health statistics?
MS. MERRYWEATHER: I have some mixed sentiments on that. Probably about two years ago I would have said yes. As it seems to be evolving right now, is that many health care providers are finding themselves in a position that they will have to rely on outside sources to get this done within two years and so I think what they are going to be doing is using their existing systems, sending out the information to another system and having that system turn around the data for the payer information.
And, again, I think part of it is I know hospitals are really concerned about the cost of these information systems. We have found recently that many providers cannot get contracts signed with IT companies in which you build in that if you move to HIPA that they will be HIPA compliant. Usually it was anytime there is federal guidelines or changes, it has always been a cost of doing business and part of the regular maintenance fee. Now they are saying no, no, no. That will be set aside differently.
We are also finding that these transaction organizations that hospitals have used for years in which you send out your information and data and they turn it around and send it to different vendors are also increasing their fees so again, I think it is going to be a little bit of turmoil for a couple of years until there is a process to get everything in place to send that information and get it established.
I also think one of the things we are going to struggle with is the quality of the data because right now if I send, as a hospital, if I send information to Medicare or Medicaid, I know that they usually put it through some strict logical edit and error checks. However, if I send it to commercial payers, I oftentimes know that there is no logical or edit checks and again, they can be 40 percent, at least in Illinois, about 40 percent of the inpatient business does not go through that process so there still needs to be that editing that goes on so it does not, having the electronic means doesn' FACE="Courier New">t necessarily result in quality data. I think there will be some gaps and some holes but again, over time I think it will lead that way.
DR. LUMPKIN: Let me see if I can understand what you said. If we are envisioning in Illinois hospitals that they will be sending it to a clearinghouse of some sort and to a mediary that will then subsequently send out the HIPA compatible message transaction, are they sending that electronically by and large or do you think that will be sent on paper?
MS. MERRYWEATHER: I think it will be sent probably the way it is right now which is the hodge-podge, paper, electronic, disks, tapes. If they have to continue going through clearinghouses.
DR. LUMPKIN: So would you consider this to be a reasonable recommendation or thought that if we are looking at health statistics, that the creation of a health statistic clearinghouse might facilitate data collection so that they would send it in their normal fashion but it would go to an intermediary or trusted third party that would then put it into a standardized messaging format. Obviously the issue has to be addressed of who would pay for it.
MS. MERRYWEATHER: Right. I think, again, everyone would love to have it all paid for and again the participation level would be there but I think now the hurdle is really getting that information, finding the resources to deliver that information and again I think it is worth thinking of existing data. I think when we move to new data, it requires additional functions and features that may not be available to hospital providers right now.
I know we also, we are struggling with some of the issues regarding, say, for example, race and ethnicity. If that is part of the billing format with HCFA, that is not something that is collected right now by hospitals in Illinois along with probably about 20 other states so that means there will be changes in your admission patterns and how you, in terms of recording that information, there is administrative changes that go along with any type of information changes as well.
DR. LUMPKIN: And one last follow-up question to that. To your best guess, to what extent do you believe that hospitals in this state have the ability of sending an electronic bill versus sending paper to a third party or something? Rough ball park, just so we know. Quarters? Or thirds?
MS. MERRYWEATHER: In the 837 format? Probably about 10 percent.
DR. LUMPKIN: Electronically?
MS. MERRYWEATHER: Yes, in the 837 format. In the Medicare flat file format, it is a little bit different. You have most of the providers in that position. Smaller rural hospitals know they usually use intermediaries. But I think a flat file is different than the 837.
DR. LUMPKIN: So you would say 10 percent for the 837. What percent for flat files?
MS. MERRYWEATHER: Just about everyone who is using Medicare or Medicaid is getting it there some way.
DR. LUMPKIN: So, 95 plus?
MS. MERRYWEATHER: Oh, yes. And again I think part of it is they may be sending to an intermediary but it is being transferred into that format and sent off.
DR. LUMPKIN: I would like to thank the panel and we will move on. We got started late so I am going to beg the indulgence of the group that we not take a break. If someone needs to take a break they can sort of stagger. Not stagger out but adjusted breaks. Thank you very much. The next panel on principles. Dick, did I see you? Dick Warnecke.
Okay, I thought I had seen him earlier. So why don't we start with Alfred?
MR. ZANGRI: Thank you. First I would like to apologize. I spent 14 hours yesterday on a plane and an umber of those hours were sitting on the tarmac so I am a little bit tired this morning and I have a three hour time difference so I hope I can survive and get through this in a reasonable manner.
For the record, my name is Al Zangri. I am speaking to you today on behalf of the National Association for Public Health Statistics and Information Systems. NAPHSIS represents the 57 states and territories and a few independent registration areas such as New York City and Washington, D.C.
The 82 members of NAPHSIS include directors of state centers for health statistics, registrars of vital statistics and information systems, managers and health arena. I would like to thank the National Committee on Vital and Health Statistics as well as Dr. Lumpkin, Dr. Friedman and Dr. Sondik for this opportunity to discuss the interim report on 21st century health statistics. In the short time that this report has been available it has been widely circulated to our membership and while it was still under review I would like to give you the association's initial reactions to the report.
In addition, I would like to formally extend NAPHSIS's offer to work as closely with the committee and staff to turn this into an operational concept as you would like us to work. As quick background on myself, I am also, so that you know where I am coming from, I am also director of the state Center for Health Statistics in Alaska and I run the Bureau of Vital Statistics up there.
Let me start by telling you this draft is very good. It is all-encompassing and deals with a myriad and a variety of issues surrounding all aspects of health statistics.
One of its strengths is that it brings together most of the relevant issues in one high level federal document. It is, I am sure you are aware, very general and as such is probably too motherhood and apple pie to be practical and saleable. However, it is an excellent jumping off point for developing an operational plan to achieve a vision.
I have just a few general comments on the document and then a few observations about where we can go from here.
Health care delivery in the US private sector is mostly based on profit motivation. Whereas public health, Medicaid, Medicare and other government-supported health intervention and financing mechanisms are perceived to focus on disparate benefits populations. As a too-long silent partner, state public health agencies deal with all populations in many aspects of everyday life. Attempting to build a new, unified, integrated health statistics system could require a commensurate change in how health care in the United States is delivered and paid for to be able to approach the visions ideals. This may be unlikely so some emphasis needs to be placed on utilizing and perhaps modifying existing and emerging health data systems.
Some thought needs to be given to the role existing CDC and joint CDC and state activities such as the national electronic disease surveillance system, the common information for public health electronic reporting, behavioral risk factor surveillance system, pregnancy risk assessment honoring system, CDC approach common data elements or CDC approved Internet standards will play in the 21st century health statistic vision.
Just like politics, all public health and health care can be characterized as local. If you want to pique people's interest, tell them that the suicide rate for teens in their state is 129 per 100,000. If you want to spur people to action, tell them that the suicide rate for teens in their communities is 280 per 100,000 in a community of 2,200. Or that while there have been 50 cases of TB converters in their state, so far this year, 27 of those cases have been found in their community in the last six weeks.
The point is, people get intellectually interested in large area numbers. They get concerned and are prepared to take action when they perceive a personal threat. The vision makes a point that data and information must be available at the lowest possible geopolitical level so that policy decision makers can make and use that information to take action.
However, for the vast majority of our counties and communities this immediately raises both small number analytical issues and confidentiality problems.
On the other hand, I don't really believe that we have to spend a lot of time convincing people to take action to make the information available at the local level. Communities are demanding that information today and in many cases they are, in fact, getting it. States and the federal government are finding ways to make that information available and that trend will continue.
We would be hard pressed to find ways to stop its release. So what should we be doing?
We should be concentrating on ways to deal with small numbers in confidentiality, whether that involved cell size suppression, multi-year averaging, smoothing techniques, education or other methods that may be developed, the vision should perhaps focus on developing processes and methods for dealing with these issues.
The key elements of the vision are clearly the 10 principles that have emerged from the discussions to date. While one might quibble with the specific wording of a few of the principles, it seems clear that the principles are both sound and essential. There are a couple of points that should be noted.
Principle one on privacy, security and so forth appears to equate the notions of research and public health monitoring. This is a serious problem for state and local public health agencies. These agencies do very little actual research and when they do do research, they go through the normal design and IRB approval process.
However, assurance of the public's health is one of the few government activities that is specifically identified in state constitutions and assurance requires monitoring activities that require data and information but do not constitute research. It would be extremely difficult if not impossible to just charge the responsibility to protect the public's health if data collection for monitoring even remotely suggested the need for informed consent.
I cannot agree more with the ideas presented in principle five regarding compatible standards. I would, however, go a bit further and suggest that standards should be set in concert with all of our partners in a forum that considers all needs and issues. This forum already exists for the data we are dealing with in the standard setting bodies of X-12 for administrative data and HL-7 for non-administrative data.
I would suggest that standards should be set in these bodies. We should all have regular membership and representation at the deliberations.
Unitary data collection for multiple purposes, principle six, is a laudable and essential goal. However, the practical application of this principle raises some extremely complex issues and, in some cases, contentious issues. Two of the most easily understandable and straightforward of these issues involve matching criteria and field ownership rules. For example, if you are inputting information on a newborn screens specimen from a form with the name Judy Smith, how do you determine whether to update the electronic record for Judy M. Smith, Judith M. smith, Judith Smith, Judy A. Smith or perhaps Judy Smith of Bethesda or Judy Smith of Hyattsville? It is possible that the lab form in the hospital may have the medical record number or a patient ID number so that the match can proceed on the basis of that number.
However, when Judy's personal physician connects to the hospital from her office to report information on her patient, she will not have access to the same record number given by the hospital unless she is in the same HMO or medical group. So we must define matching criteria to insure that the record updated for each authorized source is actually the correct record.
Let's go a step further down this road and look into the ownership question. The issue in the ownership question is who has the right to update each field on a given record. Each field in a unitary entry system must have a define set of authorities, including the right to update. In the Judy Smith example, do we allow the name to be changed or updated by the lab or medical records or intake or the ward or who?
We might try to solve the name problem with an alias field or a set of alias fields. While this is a potentially attractive solution, it does further complicate the matching machine. However, what about the address fields? Do we allow medical records or intake or billing or the doctor' FACE="Courier New">s office on a patient visit or whoever to update the address field? These questions have much more of an academic interest since the entry in the address fields will significantly impact the geographical analysis of our health measures and therefore have potential policy and remediation implications.
Research, this is a good group to be saying this to, research is generally not a primary motivator to implement or support national, state or local data systems. Billing, administrative program management and possibly evaluation and assessment are. It will only be accurate and robust if the data are needed and used at the level where it is collected. For example, Alaska has only 10,000 live births per year, yet I must maintain a full composition that does nothing but correct identified hospital errors on birth data. The disposition has a significant backlog of work.
This, however, is only the beginning. I also have a number of research analysts, two of whom spend at least one-third to one-half of their time identifying questionable data and generating queries back to the hospitals. In addition, I have a half time field officer constantly in the hospital discussing problems and issues and providing training to clerks who turn over very frequently.
In addition to all of these efforts, NCHS also maintains staff that examines the data and returns queries to my staff. This suggests the possibility of an additional principle underlie the vision of health statistics in the 21st century, that data be collected and maintained at the level where incentives for accuracy exist.
When I think about where we go from here, as I read the draft, a number of questions began to form in my mind. What should and what can the national health statistics system look like? What should be the responsibilities of the various entities in developing and maintaining the system? What motivation exists in the system or can be built into the system to make it work? How can or should the system be financed?
I am not going to pretend to have answers to these questions, but I do have a few thoughts on how we proceed to obtain answers. A strong collaborative partnership with existing organizations can be used for a wide variety of professionals into the visioning process. AASTO, the state health office organization, NACHO, the county health officer organization, AMSHIP, the maternal and child health organization, CSCE, the state epidemiologist organization, and NAPHSIS, my organization, among many others, come immediately to mind as people who should have a strong interest in helping to refine operationalize and market the vision.
While I feel comfortable identifying these organizations, I cannot speak for, not can I committee any
organization other than NAPHSIS. NAPHSIS will support developing and marketing of an operational division. NAPHSIS's membership participation with vital records data collection, processing and distribution, various registries, hospital discharge and other data sets, including Medicaid and other insurance claims, WIC, BRUS and CRAMS, will most likely continue and expand in the future.
Moreover, existing and future technological change could be the cornerstone to significantly change how health data is managed in a consistent and standardized manner but effective federal assistance regarding privacy legislation, standardization, collaboration, partnership development and funding participation is required.
Note that I purposely said funding participation, not funding. States and similar localities are already putting significant funding and other resources into that activity and that is going to continue. Federal help would greatly enhance the process.
NAPHSIS is willing to participate in detailed discussions and work groups to refine the vision to more practical, manageable terms that can be used by legislators and policy makers at the federal, state and local levels as well as by the public and other customers. As with many visionary descriptions, there is a need to reduce the content of the report to be able to start developing methods to achieve some successes. And to show legislators how such a health statistics system will benefit the nation as well as in their constituents.
I suggest the vision can be distilled into a much briefer report with many of the main thoughts placed in bullets. This document could be used for marketing and a detailed operational implementation plan can be developed to guide future actions.
In developing the vision and operational plan, instead of trying to capture all data to measure all aspects of health because cost and philosophy prohibits such, I would recommend defining specific sets of data that exist or could exist and working to standardize these and master their collection and transformation into information. This is not a new concept. The National Center for Health Statistics cooperation health statistics system attempted to do this. Unfortunately, funding, technology, state commitment and interagency cooperation was sorely deficient.
The interim report alludes to this idea in the Zelmer, et al., paper. States are already working towards this objective through the state center for health statistics which exists albeit at different levels of effectiveness in every state. Over the last 10 years, these organizations have come to realize that they generally cannot afford to own and maintain every health data set that exists. They can, however, work through partnership and collaboration with the agencies, public or private, which own and maintain the data, and thus have access to the data sets for analysis either singly or in combination. This collaboration and partnership is the basis of the notion of a virtual center for health statistics.
This is the area where the vision can be extremely effective in developing the future of health statistics. The vision and operational plan should promote and foster cooperation, collaboration and partnership at every level. It should focus on bringing in more of the existing but underutilized data sets such as health insurance, managed care, inpatient and outpatient, billing and management system, automated medical examiner systems, WIC, public assistance, alcohol and drug abuse, family and youth services, foster care and child support which may be underutilized or not used at all at the federal, state of local level.
It should concentrate on development of a nationally applicable standards in a collaborative setting. It should deal wit how disparate data sets can be successfully employed and translated into useful information. It should build on, expand and standardize existing health information sources.
In closing, I want to thank you for your time and I want to reiterate as strongly as possible that NAPHSIS vigorously supports the vision and the visioning process and offers our active participation. Thank you.
[Applause.]
DR. LUMPKIN: Thank you.
DR. WARNECKE: Good morning. My name is Richard Warnecke and I am Director of the Health Policy Center and the C3enter for Health Services at the University of Illinois at Chicago. I am also professor on the faculty of the Division of epidemiology in the School of Public Health, the Department of Sociology and the Department of Public Administration at the University. And in a previous life, I directed the Survey Research Laboratory at the University of Illinois for about 15 years.
My research interests have been in cancer control and particularly focused on the medically underserved. Because of that interest, I am a consultant to the office of Special Populations and research at the National Cancer Institute and also to the California Tobacco Control Program.
I mention these things because they reflect my dependence and interest on public health data. We have been asked to comment on the principles in this section and I must say I read with great interest the vision you presented. I think they are the right principles in the general sense of being the right thing but I wonder frankly how realistic they are given the value placed on acquiring population based information by our public leadership and the increasing unwillingness of individuals to provide such information that may be necessary to run such a system.
As a researcher in the field of data collection and as a user of data, I think that perhaps the principles you outline may also conflict with each other, at least at levels of practical reality and data collection and data quality.
I also was a little bit confused about the 10 principles and the six principles, but I just commented on all of them.
The details in the list of principles for the 21st century vision, summarized on pages 15 to 19 of the interim report read as if they are of equal significance. I would suggest that if they are approached that way, that will be a problem in terms of achieving the goal. As I read the report, I was impressed by this. The visioning agenda that raised a series of questions, the first of which was how the, that did reflect a prioritization, the first of which was how the information is going to be defined and the need for some consensus around what the information needs are and what they are likely to be.
This will require consideration of questions like this I think, the burden of the various public health issues in the population, ideology of the critical threats to health, the potential for intervention, methods for tracking and methods for measuring outcomes. These are all covered in the report and then the next question is how will the level at which the information is needed affect the issues of confidentiality and privacy which are stated in both as being the primary concerns of this plan.
Arriving at a consensus requires various stakeholder groups buy into both the need and the concept of a public health strategy represented by the consensus around the data needs. It is my observation that there is not really a constituency for public health as such as there is more likely separate interest groups with individual agendas which sometimes overlap and sometimes don't so you have people concerned about AIDs, tobacco control, maternal and child health, use issues, asthma, but we have not as a field successfully created a vision for the public and for the public's representatives of an overall public health agenda to which a comprehensive health statistics program can be linked.
If a comprehensive health statistic strategy is outlined in this report, it is to be successfully implemented following the conceptual framework, that conceptual framework will require public understanding, both in the nature of public health and how the statistical program as proposed relates to that vision and more important how it is in the public' FACE="Courier New">s interest to implement it. Implementation implies investment and the plan will require considerable investment.
So are the principles of equal significance? Well, I think the most important of the principles are the first two, that is, the principle that says that confidentiality needs to be protected and the principle that there needs to be an overall plan or strategy by which it is implemented. After that, I think the other issues that come in connection with that, the other 10 or 4, depending on which list you use, have to do with questions like these. Are they of equal significance and is the information, how are the data to be aggregated, how should they be collected, what standards of quality need to be applied, how will the data be used, what is the flexibility of the data to address new issues, the level of detail necessary to impact decisions, the levels of decisions that need to be made, what data are needed to address key health decisions and then finally who has access to the data, what data will be made available, to whom will the data be made available and in what form will it be made available.
Then there are question about stakeholders. Will they support the system and how will the public respond to provide the data and then finally, because there is several statements in there about the need to be able to get data at a level that will facilitate planning and flexibility so that we can predict data in advance, those are questions that need to be addressed. My experience with standard existing data bases are that they are not amenable to new questions because the data are collected related to the questions that people are already interested in and not ones that they haven' FACE="Courier New">t thought of yet.
This is why tumor registries, for example, always have a rapid ascertainment component connected with them if they are going to be used for research because there are new hypotheses and new questions. I think as health policy develops, the same thing is going to happen with health policy. The health policy and the data connected to that that are relevant to date are not going to be relevant five years from now. The health care delivery system as a whole strikes me as being in a very unstable state in terms of what it eventually may look like and this is going to effect individual health care as well as public and private health.
Another issue that needs to be considered in all of this is the question of confidentiality. Requirements for items four, five, six, seven and nine only require that they would be collected at the individual level which may lead to some level of identification that might conflict with item one. For example, there are increasing restrictions on how researchers can even approach the public to seek information. Some of these approaches add to the respondent burden in ways that may prove to limit their participation. When you limit the participation of participants, you end up with biased data. I think that is pretty obvious.
In one example from what we are doing with public health clinics in Illinois, we are funding to study how and whether public health clinics who subcontract with departments of public health and Department of Human Resources to provide community health services. This is an evaluation of the tested smoking cessation program. We just received notice from OPRR that each of these clinics, some of which are only two or three people, are going to have to set up their own board to review compliance with this tested intervention. What is that going to do to the participation of those clinics and their willingness to do other kinds of things in the future. We are hoping we can negotiate it but it reflects an issue about the relationship between these conflicting values.
The same thing happens with consent forms, the growing demand for longer and more complete consent which is certainly responsive to some abuses in the past also serves as a disincentive and they tend to make issues that were not necessarily a big deal for the participants to be a big deal for the participants and affect their cooperation. We have already seen this in surveys as we have seen other kinds of problems.
Some of this rises from a general antipathy among the public to providing data. The social norms that support common goals that provide data seem to be eroding for a variety of reasons. And the census which was mentioned earlier is a great example. When in anybody's memory has a presidential candidate encouraged people not to fill out the census form? This happened as part of this year. When is a leader in Congress like the Senate majority leader ever told people not to break the law, not to complete a census? There also are continuing disputes about the budget to coll3ect data that meet general standards of quality.
On the other side, the public is also suspicious of data collection by government agencies or by agencies acting as agents for the government. Telephone surveys get low response rates. People do not respond to face-to-face surveys and the relative cost to make face-to-face data collection extremely costly.
This reflects some concerns about privacy but there is a tension here about the concerns about privacy and the concerns for public good. I was struck by an article in the Tribune about a situation in England where two girls were raped and they could not, after working very hard, identify the subjects so they started a door-to-door canvass to collect DNA and they got no refusals. Imagine that in the United States because there is a different value of what public responsibility is. I think in order to implement an ambitious system like this, somebody is going to have to address that question. The public doesn't understand why the data are needed. The constituency for public health and public health data is fragmented and everybody has their own agenda. There is an absence of an overall strategy for reporting data in a format that communicates value as well as its use.
And with the increasing complexity of the population, ethnic and cultural values now compete with general values. I read a recent review of some work that people were doing in California on how you respond to different kinds of questions and in many cases, the questions that are being asked, that we consider innocuous, that people that we interviewed consider innocuous are to these populations interested and invasive and problematic. That means that we have got to spend more time thinking about how we ask questions and how we ask people for data and take into account a much different social structure than we had before.
The issue that is raised in the thing about the importance of being able to respond to new questions, there are a lot of questions now about the differences in existing data systems, the SEER data system does not, because it collects data from medical records, does not include information on socioeconomic status. So it is difficult to sort out these things and planning for them in advance, everybody thought it was a major breakthrough that they got race into the data set for the SEER or they got course of first treatment, asking a hospital to provide information, financial information or even education would require the hospital to participate in these programs that provide additional data and there is not a lot of optimism that that is going to happen so the important questions that could be answered to existing data bases are not going to be answered unless we begin to thin differently about how these things are coordinated.
Well, what I was going to suggest was that we needed to do some things and one of the things I think we need to give some consideration to is how to define a constituency fr public health that is meaning to the people who are making decisions. Again, I will cite the recent experience in Illinois with the tobacco money where our legislators voted to send a great deal of it back to the taxpayer as a rebate on property taxes. The people who were opposed to that, that is, the tobacco interests and the public health interests, argued that this is a travesty but they didn't point out, for example, that by the time you got your tax rebate and paid taxes on it, it was going to be less than it was and they didn't have any data to report on what the alternative costs would be of not providing better tobacco, prevention and cassation services to the population for that money.
These are the kinds of issues. We have to learn how to address these issues in the way that is responsive to the current norms, even though they may be offensive to us. I mean, talking about things that we think are in the public bid in terms of economics is sometimes offensive but I think that is the way they are being considered and that is the way we need to learn how to talk with them.
I think also that we might benefit by socializing future generations to understand better what public health is about. They are doing some interesting things in tobacco control in California by incorporating issues related to tobacco control into the school curricula in various schools. I think we should work to get that to happen for public health in general so that in math class the students compute rates and understand what morbidity and mortality in these things are and how they affect them and how the statistics that are collected by your system are important for answering those questions.
I think we need to involve the health care delivery system in whatever partnership or coalition or collaboration comes out of this but I think the question is, if we do that, again we come back to confidentiality and concerns, are those collaborators going to want to use the information that they are providing together with the information that they are collaborating and collecting for purposes that we may not want them to and I think that is going to be a big issue. Insurance companies may be a big source of data. They also may want access to the data that they are providing to help.
You mentioned that in your report. I think, though, around the issue of collaboration that is going to be significant. And finally, I think it is time that OPRR, Office of Management and Budget, the major statistical and survey agencies, get together and work out a strategy for confidentiality and the protection of research risks that make sense because right now it is not understandable to anyone and it is not going to help you implement the kind of system that you have. Thank you.
[Applause.]
DR. LUMPKIN: Thank you. Are there questions for the two panelists? I would like to welcome Dan who has only been trying to reach here for the last 18 hours or so.
Al, I have a question. You said a number of times that state health agencies don't do research by and large but I think that we may have a problem with terms in that I would be hesitant to say that state health agencies don't create new knowledge.
MR. ZANGRI: I would agree.
DR. LUMPKIN: And so the difficulties that we have in trying to define this because I think, for instance, making the connection as I said in my opening comments, between a group of illnesses and an organism in the water in Milwaukee was, in fact, new knowledge that had an impact on health throughout the country. One would say that if you are a health official in the middle of this outbreak, you are not doing research. You are actually doing your job and we may need to have some term to better define the reconversion of data into information and information into knowledge in the course of public health business activities.
MR. ZANGRI: I agree. That was exactly my point, that as we know research in the in-state health agencies and the academic community, we are generally talking about a defined protocol with a defined set of subjects and a defined hypothesis. When we talk about health status monitoring, as you are well aware, in a public health agency, what we are generally talking about is a reaction to a major problem and making sure we have the information there to deal with the problem and making sure we have the information there to identify where potential problems are coming from.
DR. ZUBELDIA: Dr. Warnecke, you made the comment that hospitals and entities that are collecting data may not want to collect the additional information or maybe may want to withdraw from the studies because of the additional requirements. Do you think that the principle of collecting data just once would be helpful in those situations? They may not have to collect inc