[This Transcript is Unedited]
National Center for Health Statistics
4105 Hopson
Road
Research Triangle Park, North Carolina
DR. LUMPKIN: We're going to get prepared to get started. Good morning. My name is John Lumpkin, and I am Chair of the National Committee on Vital and Health Statistics. I'd like to welcome everyone to a joint work group, the Work Group on National Health and Information Infrastructure and the Work Group on Health Statistics for the 21st Century.
I would also like to see if, Dan, you have any welcoming comments before we go into introductions.
DR. FRIEDMAN: No, thanks, John.
DR. LUMPKIN: We'll start off with introductions. I'd like to tell everyone that we are going live over the Internet, so as such, as our usual thing, we would like people to first introduce themselves, and of course when you speak, if you would tell people who you are, because obviously we know, but not everyone on the Internet would necessarily know.
My name is John Lumpkin. As I mentioned before, I chair the work group on NHII. I am also a director of the Illinois Department of Public Health, and only of pertinence to this meeting, Perviso High School, class of 1969. Dan?
DR. FRIEDMAN: I'm Dan Friedman with the Massachusetts Department of Public Health. I chair the Work Group on Health Statistics for the 21st Century, and UNC, 1972.
DR. HARDING: I'm Richard Harding. I am a member of the committee, and I am vice chair of psychiatry for the University of South Carolina School of Medicine, and a child psychiatrist.
MS. CURTIS: My name is Janis Curtis. I am the Senior Associate Chief Information Officer at Duke University Health System, and I am a 1970 graduate of Perviso High School, so that was why Dr. Lumpkin made that statement. Our paths kind of crossed a little bit earlier in our lives. I appreciate the opportunity to come and share with you some thoughts this morning about the proposed infrastructure.
DR. KIBBE: Good morning. My name is David Kibbe. I am one of the panel members. I am the CEO of a company called Canopy Systems, based here in Chapel Hill, North Carolina. I am also a family physician.
DR. LUMPKIN: Actually, I'd like to ask everyone, when you are speaking, you have to move the microphone fairly close to your mouth so it picks up, so we can get a good signal.
DR. RICKETTS: Tom Ricketts. I'm the Deputy Director of the Cecil G. Sheps Center for Health Services Research, and chair of the Committee on Health Information Policy in North Carolina.
DR. ZUBELDIA: Kepa Zubeldia, President of Clare Corporation and member of the committee.
DR. WEINZIMIER: Rob Weinzimier, Chief of the Data Dissemination Branch at the National Center for Health Statistics, and for the purposes of this meeting, though slightly outnumbered, a proud Maryland Terrapin fan.
DR. DEERING: Mary Jo Deering in the Office of Disease Prevention and Health Promotion. I am the lead HHS staff for the NHII work group.
DR. HUNTER: Another proud Maryland Terrapin fan. Ed Hunter, Associate Director for Planning and Budget Legislation at the National Center for Health Statistics.
DR. BUESCHER: I'm Paul Buescher. I work at the State Center for Health Statistics in the North Carolina Division of Public Health. I am a statistician in charge of the statistical services unit.
DR. BOOKER: I'm John Booker. I am the director of the now Center for Health Informatics and Statistics in the North Carolina Department of Health and Human Services, and I work with Paul.
DR. STEINDEL: I'm Steve Steindel from the Centers for Disease Control and Prevention, and staff to the NHII work group, and versus the Maryland people, a Georgia Tech fan.
DR. BLAIR: I'm Jeff Blair, Vice President of the Medical Records Institute and a member of the committee.
DR. SONDIK: I'm Ed Sondik, Director of the National Center for Health Statistics, and a fan.
DR. JACKSON: Debby Jackson, National Center for Health Statistics.
DR. UPCHURCH: Patrice Upchurch, National Center for Health Statistics.
DR. MACKISON: I'm Delta Mackison, National Center for Health Statistics..
DR. SURK: Chuck Surk, National Center for Health Statistics.
DR. CHRISTIE: Heather Christie with Emreddy and Harris.
DR. LUMPKIN: Great. We are here to discuss two reports. Actually, we are not here to discuss two reports, we are here to go beyond these two reports and move towards the development of the final documents.
The National Committee over the last number of years has had a mission which is to look at health-related information and health-related data and data collection. In 1996 with the passage of HIPAA, that activity took on a particularly sharp focus related to standards related to patient medical record information, standard transactions, electronic data interchange, which really brought us much deeper into the realm of health data related standards involved in health care particularly, and really became a sharp focus of the committee.
Over the last year or so, the committee has been trying to redefine its efforts. Most recently, we engaged in a strategic planning process of the executive subcommittee, which was reviewed by the full committee in its last meeting, to begin to set a new direction, which allows us to take where we have been with HIPAA and where we have been historically, and to wrap it up into a consistent whole, a vision for health information into the future.
An important document that has pulled that work together was an initiative to develop a definition of a national health information infrastructure, and we are toying with the title now, Better Information for Better Health.
This approach looks at a much broader and higher level of rendition of health information, so that we can have a national vision. It is kind of hard to get someplace if you don't know where you're going, if you don't know where the roadmap is, you don't know the direction. One could say it would be very hard for a candidate to decide where they are going to be going in their election unless they decide at some point they want to run for President. And of course, that is always a very decisive moment, and having an election is a defining moment in someone's life, even if it goes on for weeks and weeks in a recount.
But for us, there is no particular election. There is no singular event. But we do know that a significant milestone has been yet to be achieved in the area of health information, to the extent that we have established a way for us to have a system that functions at a high level, a level that allow interoperability of information, of information to pass from one system to the other. As important as it is to transport the information, the meaning must also go along with the data.
These are some of the issues that we have struggled with in regards to the most recent document and letter that we sent to the Secretary on patient medical record information. That certainly fulfills a major piece of what we are talking about in a national health information infrastructure.
But yet, that infrastructure is much, much broader than just patient medical record information. The health of a nation is best defined by many categories. In fact, you can go back as far as the Egyptians or Hippocrates to see that the ancient peoples understood that if you wanted to define the health of a community, you look not just at what was going on and what was being treated by the physicians, but in the words of Hippocrates, you look at the air that they breathe, the water that they drink, the environment in which they live and their activities, whether or not they are given to slovenliness or actively engaged in exercise.
As such, the national health information infrastructure is conceptualized as being that piece, that vision, that allows the free exchange of information that is pertinent to each individual's health and as such, the health of the nation as a whole.
This document which we have produced is really the first step. The hardest step is the one that we need to make, based on the hearings that we have been conducting here, in San Francisco and will be conducting in Washington, D.C. in January. If we have a vision and we want to go in that direction, and by and large, the feedback we have been getting is yes, we have been going in the right direction, what are the concrete steps that need to be done.
It is not clear what the future will hold. Certainly it is not clear what the political future will hold in Washington will be. That seems to be being determined as we speak in Florida. But clearly, the role of the National Committee is becoming increasingly important as we begin to identify some standards that will serve to make this vision come into being.
As the process has gone through, we have had a high degree of cooperation between us and the Department of Health and Human Services, as an advisory committee, certainly the involvement of our staff, and made sure that pretty much we are moving in the same direction as the Department of Health and Human Services.
As such, we can begin to identify some of those standards that at least will be viable candidates for adoption of the Department of Health and Human Services as they implement the HIPAA process.
The goal of this meeting is to move forward, both the NHII as well as the work group on health statistics, to begin to identify those concrete steps that we will follow. After this meeting, the two work groups will be having a joint meeting in December, so that we can better integrate the two documents and coordinate them as we begin to move toward their release sometime in the following year or thereabouts.
So that is where we are looking from the NHII perspective. I'm going to toss it over to Dan to talk about the 21st century vision for the national health statistics.
DR. FRIEDMAN: Thank you, John. The 21st century vision for health statistics is a subset of the NHII. Specifically, it is the subset of health data that can be generalized to a known population of individuals, events, organizations or institutions, and data that are specifically used for designing, evaluating the monitoring programs and policies.
The vision for health statistics as we have defined it includes three components. First of all, we are looking at a vision, looking for a vision, which includes a broad integrative definition of health, health not the absence of disease and health not disease itself. We hope to define a vision that includes the population's health, the health care system, the interactions between the population's health and the health care system, as well as the non-health care, non-medical care determinants of health.
We are also hoping to define a vision that includes not only public data systems, but also private data systems, and that builds upon and recognizes the potential strengths of each of them and the potential synergy between them.
A second component of the vision is going to be a definition of the elements, the resources, the organizations that can help to implement the vision.
Third, we are also hoping and planning to define a set of criteria for evaluating health statistics systems currently and in the future.
The process that we have engaged in is now in just about the end of its second year. We started out trying to assess where we currently are. We started out with a series of commissioned papers, authors in this country and abroad, with a series of local and national discussion groups, as well as with a National Academy workshop.
Based upon those efforts, we developed the interim report that I'm sure you have looked at, and based upon feedback from the regional hearings and other feedback that we receive, we are going to go ahead and draft a final report.
The comments that we have received so far in the interim report have been quite consistent. On the one hand, the comments have been complimentary, largely complimentary in terms of the principles, but the comments have also pointed to a need which we recognize and agree with, and the need is for much greater specificity about how we get from here to there, as John said.
One of the things that we are hoping for in today's meeting is specificity about how we get from here to there, and particularly specificity around two of the principles that were delineated in the interim report. The first principle being principle number four, information must be available at a sufficiently detailed level to be relevant to real decisions, and principle number seven, health statistics data must be provided back to communities, community groups, local governments, and so forth in ways that can maximize data access and ease of use.
So we are looking forward to the feedback that we receive today and for your suggestions about how to move forward, and then in conclusion, let me just apologize because I am going to need to leave unexpectedly early.
So thanks for coming, and I'm sorry I'm not going to be able to stay for the day.
DR. LUMPKIN: At this point, we are going to move on to our first panel. The panelists had introduced themselves when we went around the table, so we will start off with Tom Ricketts.
DR. RICKETTS: Thank you for the invitation to speak with you about the vision toward a national health statistics infrastructure.
I come to this from a background of working with a similar effort in North Carolina, as the state began to try to move toward comprehensive health reform at a time when that seemed to be possible. Early in the '90s, the question was not if, but when, we would have some form of national health insurance or national health coverage program. In the early part of the 21st century, that question seems a little naive.
But at the time, we felt that one of the keys to developing a national program of health care coverage and a state program for health care coverage required the coordination of health data at the local, the community, the practice and across the state, to understand our costs, understand our needs, and understand where to go.
The vision that you have outlined is very similar to the vision that was developed in the data and information committee of North Carolina, then called the health planning committee, which became the health reform commission. The vision produced certain vignettes such as those that are described in the NHII vision, where there is a free and easy access, appropriate access to health information for personal and clinical decision making or personal care decisions, or for the development of policy at the local and the national level.
As the committee began to work toward practical development of this program, we found that we were confronted with many technical issues, that this committee wrestles with on a day to day basis.
At that time, we had very few standards for interchange or data exchange. We didn't even have an electronic signature authority. We didn't have a lot of the necessary information infrastructure that would even make such a project feasible.
However, we did have a lot of visioning, and a lot of visioning that raised expectations on the part of the public, on the part of politicians, and on the part of entrepreneurs, who felt that they would take a chance to exploit the expectations that were being developed by these visions.
The vision is good. The vision is at some point in the future realizable. But the vision must be managed as well as the technology must be managed in its development. The expectations of the public and the expectations of the politicians must be managed to match the reality of the technology and the reality of the capacity of the system.
I give that one only because we left a lot more disappointed than satisfied people, even with the great progress that we did make in developing the underlying infrastructure.
At the time in 1993 to 1994, our biggest challenge was data merging, and data merging of existing databases. That is, the creation of standards for existing databases for which there were no standards. These were not clinical databases, but more often they were the collected information that was gathered by government, by regulatory agencies, by the myriad groups who are charged with collecting information about individual, local and government and organizational health activity.
Just those standards proved daunting, in terms of creating what was the goal in something called the community health information network, or CHIN. That was the hot name for the kind of vision that we are seeing today. Rarely do we hear the term CHIN anymore. I think it lost its value as people understood the difficulty of creating such a thing.
In this process, as people came to us to provide assistance in the development of programs, we learned that there was great value in the data, and that there were many economic opportunities for the private sector.
In the vision for the information infrastructure, you mentioned that health data are a private resources as well as a public good. But far less attention is paid to this dichotomy between private resource and public good, and how that would be managed say for the problem of confidentiality.
The biggest problems when dealing with the balance between private resource and public responsibility is that entrepreneurs are willing to take responsibility for the management, handling and marketing of the private resource aspect of health data, where there is very unclear responsibility for the ownership, for the dissemination and for the use of the public interest aspects of health data.
At the national level, this committee, the National Center for Health Statistics, Vital and Health Statistics, have set standards and taken on a sense of responsibility for developing the things that are necessary to meet your responsibilities, which are to understand the status of health care in the United States, and progress and change that we make as we attempt to meet our needs, both as a nation and as a society.
However, as you move down the levels of government and down the levels of aggregation of population, you find less and less sense of responsibility for the coordination of standards, development of standards, and the use of data in the public interest. Many states have data coordination committees. Many states cooperate with the Centers for Disease Control and the Center for Vital and Health Statistics, but they are not the only people charged with coordinating some aspects of data.
In North Carolina, as we worked, there was an immediate conflict, interagency, over who was going to control say a new technology that was entering our vocabulary at the time, and that was geographic information systems, and how they would be handled. One state agency desired complete control over the GIS analysis capacity, while the state center for health statistics was making the greatest strides in its use for public good.
There were no rules for the distribution of responsibility and future planning for the use of those data, whereas the private sector was able to move ahead quickly in making use of the new technology, marketing it, and providing it to those people who felt the need for it.
Our problems with public coordination really become very difficult when one comes down to the personal health level. You have placed a vision for the personal data system, a virtual data entry mechanism, but there still remain some conflicts about the ownership of these data, and how they would be used again for public purpose.
For private purposes, an entrepreneurial spirit guides folks who wish to take that information that is available and use it, providing value to decision makers and to the market.
The public sector is not as aggressive in understanding the values of such data or the aggregation of such data. I believe that we need to spend some time providing the vision for the public sector as opposed to the end user vision. The public sector and those people who are responsible for the public sector and the commonwealth of the nation, the states and communities, need to be educated as to how they may use these data, rather than the gee-whiz examples that we have of personal health utilization.
It is difficult to sell the use of fairly complex data systems to politicians who don't have a particular vision for what they are seeking, and what they want to see in terms of making use of the data. I believe that we need to make more effect in educating people, that is, the politicians and policy makers at the state and community levels, as to what the uses of these data would be.
I would provide the county commissioners, I would provide state legislators, I would provide local health directors some sense of a vision for how they would use the data before I would move into promising personal health systems.
Our balance between the private resource and public interest is like the way we handle mineral rights. You all understand data mining, I'm sure you have heard the term. We license data mining in a way that we handle mineral rights. That is, you can have some sense of ownership of your property as you have some sense of ownership of your body, but you can find that that can be lost to an external organization that owns what is beneath the surface of the ground or beneath the surface of your personal lives in terms of health data.
If you understand the process by which people have exploited the mineral rights of communities in say West Virginia or Louisiana or in the Western states, you know that this is not a pretty process, when people take something that is to be shared. I think that if you recognize this problem as being real, that we should spend a good deal of time working this out and making sure that those conflicts were dealt with formally and up front.
As we moved ahead as a commission and as a committee on data information needs, we found that these conflicts and these opposing forces were never really formally addressed, or never really given a forum for developing some sense of either turf or formal division.
In your vision, you also talk about a community vision for health data. I work daily in this field, and right now am working with the division of shortage designation to try and create a new and improved measure of under service, something that is not likely to occur, but something which the demands of policy will require.
But in terms of developing a measure such as under service or a measure of community capacity, it is very unclear as to who the client is for any kind of community measure. The clients are more likely, those people who seek denominators for the use of information for investigation, or denominators for the use of information for benchmarking, for the purpose of private resource entrepreneurial dissemination in marketing.
We need to develop some better sense of the context and use for community health markers. Great emphasis is placed on this in this vision and prior visions of the utility of health data, where very little effort has been made on developing the market for any kind of public sense community indicators.
So my message to you is that it took us from the time we began in 1992 to two years ago to get the electronic signature passed, and to watch the process of the electronic data interface and interchange committees as they move forward. You recognize the time that it takes just to work out the technology.
But there is also the time necessary to work out the expectations. For that, I think we must pay as much attention to the contents and technology of our visioning as we do to the contents of the technology that will make the vision come true. That means that we must be more realistic and understand that we must develop a market, rather than just provide a vision.
Thank you.
DR. LUMPKIN: Thank you. We'll take all three members of the panel, and then we'll go into questions at that point. David?
DR. KIBBE: Good morning. My name is David Kibbe, and I am the Chief Executive Officer and founder of a company called Canopy Systems, which is based here or very close by, in Chapel Hill, North Carolina.
I am honored to have been asked to provide testimony to assist this committee to further develop the national health information infrastructure. Because Canopy Systems has several clients located in rural areas of the country, and because we have experience in the trenches, so to speak, with both the successes and barriers to success of using Internet-based software in these environments in rural parts of the country, it was suggested by the planners of today's meeting that my comments be directed towards the special requirements of rural health care and the Internet. I was also asked to suggest specific steps and actions that could be taken by the federal government to assure that the national health information infrastructure extends to rural America and Americans.
I have the sense that I am the token entrepreneur in today's meeting, so I would like to take just a couple of moments to tell you about what we are doing, and then get to some examples that I think will address quite squarely the issues of detail of data needed in these systems, and how to achieve some level of feedback to the community.
Canopy Systems is a company that designs and hosts web-based software systems for case management utilization and disease management. So in the developing parlance of the e-health industry, we are what is known as a vertical ASP, or applications service provider, combining the main expertise in health care management with software built to run on the Internet.
Our flagship product, called Canopy, is used by case managers to manage and coordinate the care of patients typically who have chronic and or destabilizing diseases, and to securely share that important clinical information with caregivers in sites throughout the community, for example, physicians' offices, nursing homes, home health agencies and not yet, but hopefully in the not too distant future, health departments.
Our products are designed in a native Internet environment and meet current and anticipated HIPAA standards for security and privacy of Internet transmission. My company, Canopy Systems, is a subsidiary of the Medical Mutual Insurance Company of North Carolina, which I mentioned only to make sure that you understand our heritage is that of the North Carolina Medical Society. We are quite literally a child of the North Carolina Medical Society as a company, and wholly owned by the physician policy holders in the state of North Carolina, which makes us I think the only company of our kind that is owned entirely by physicians.
There is little question that rural populations have very significant health and health care delivery problems that I believe can be addressed by the application of Internet technologies in these communities. As you all are well aware, the Agency for Health Care Research and Quality has documented through its work that almost one in three adults living in rural areas of America is in poor to fair health, and nearly half suffer from at least one major chronic illness. Traumatic injuries are much more common in rural areas, and residents face worse outcomes and higher risks of death than urban patients, partly because of transportation problems and lack of access to advanced life support training and emergency medical personnel.
Low population density in rural areas makes it inherently difficult to deliver services that target persons with special health needs. Groups at particular risk include the elderly, the poor, people with HIV and AIDS, the homeless mothers, children and adolescents, racial or ethnic minorities, and persons with disabilities.
Many small and rural hospitals have closed and are continuing to close, while other health care facilities are in dire financial straits. The supply of primary care providers in rural America is actually decreasing, adding to problems of health care delivery access in rural America.
The Internet as a low cost vehicle for the distribution of information and information management services can play a role in assisting health care professionals and their patients to make better decisions regarding their health, to coordinate care among diverse and geographically separated provider sites, to help avoid errors due to this fragmentation, and to help us all understand, while certain individuals and groups of individuals choose to use particular resources and choose to avoid others.
At Canopy Systems, we have seen the benefits of the Internet in rural areas in real time, so to speak. In 1998, Access Care, which is a 125-physician IPA in 25 medical practices, some in very rural parts of North Carolina, asked us to design and build a web-based information system that manages information on over 85,000 children who are Medicaid beneficiaries in the state of North Carolina.
This web based software, rather imaginatively named Patient Tracker, is used by care managers in 25 medical communities to study, record and report on the experiences of the patients in this population who visit the emergency room or are hospitalized. Case managers in each one of these communities access our software via modem connection and browser, using the system to check patient availability status, previous admissions, medications and other clinical elements.
They also track patient visits to the emergency room. This information collected in a single database is then used to generate regular, sometimes weekly, reports which are studied by access care managers, physicians and nurses, to understand their organization's trends and utilization, to compare rates of hospitalization for specific illnesses among the several practices and several doctors involved, and to test the impact of patient education and extended facility hours on lowering unnecessary ER visits.
We also designed and built a web based asthma disease management component of this system, that links reminders and evidence based guidelines with asthma management and educational tools.
We are told that our Internet based system helped Access Care and the state of North Carolina Medicaid program save several millions of dollars over a two-year period through care management. Although they did not measure patient satisfaction or service quality metrics of this program, many of the case managers involved reported numerous stories and shared anecdotes with us about how their interventions and their timely access to information to their patients' previous experiences made a large difference in the lives of patients and families served.
Another of our rural clients is using Canopy, which is our second generation web based product for a continuum based case management project, an innovative program for the frail elderly in rural Northeastern North Carolina. This program, like TLC for Transition Life Care, is supported by a grant from the Duke Endowment as a joint effort of Halifax Regional Medical Center and Rural Health Associates, a group of five rural clinics, that also owns and operates a rural nursing facility.
TLC's Canopy links nursing home personnel, hospital nurses and physicians with the web based medical records of over 100 frail elderly and nursing home patients. One of this program's components under development is a website that helps direct patients and families to community agencies and programs for the elderly in these three rural counties.
Dr. Jane McCaleb is the person most responsible for the success of this program, and someone who can rightly be called a physician champion of rural health Internet initiatives. She considers the information in the web based system to be part of a triad involving information, intervention and interaction, which she feels must be in what she calls a dynamic balance in order to optimize patient care and to anticipate future decisions among the frail patient population for whom transitions are to be expected.
Dr. McCaleb was also instrumental in the design of the TLC version of our product Canopy, including the sections maintaining up to date information on patients' advance directives and alerts for patients on multiple prescription drugs. Her system is now being integrated with the case managers who use Canopy on the in-patient services of Halifax Regional Medical Center.
Perhaps the most helpful comment I can made regarding my company's experience delivering web based information systems in rural areas like this to date is how successful they have been. That is, how few complications and barriers we and our clients have encountered. These are not unsophisticated software programs. We are not talking about web portals here. Canopy is a multi-tiered software program written in JAVA HTML and X-HTML. It is servercentric and it is built with the security and privacy guidelines of HIPAA firmly in mind.
The security subsystem alone is very complicated, involving client size, strong authentication via digital certificates and industrial strength 128-bit encryption or higher. The product provides usable audit trails. It is optimally run via high speed connections, either DSN or partial T-1 lines, and the software programs have over 70,000 lines of code.
Yet, even in rural areas, where case managers and providers have had to connect via telephone modem at relatively low speeds, they have found value in using these web based systems. For the most part, we have been able to negotiate the intricacies of third-party digital certificate authorities with minimal difficulty, and training of the providers has been much less time consuming than anticipated.
This last point I think bears some mention. Our training experience has been very positive, and I think is due primarily to the universal familiarity with the web-browser interface. Even somewhat computerphobic nurse case managers in rural areas have found our software easy to navigate and familiar because of the browser interface.
What have been some of the problems and barriers to overcome? Clearly one problem for us has been the quality of the telephone lines in some rural areas of the country. We and our clients would prefer to see the same dependability, reliability and modernity of telephone equipment that exists in urban and suburban areas extended to rural areas. It is a very practical issue. We have also had occasional problems with small local Internet service providers who may not always have the capacity needed to support rapid growth in their customer bases.
Finally, there have been occasions when just the idea of the Internet posed problems, due to lack of understanding about security or fear that the Internet is inherently less safe than the hodgepodge of paper and unsecured server systems that predominate in health care organizations, particularly in hospitals.
Every contract to put our software into operation has to go through a lawyer's office. It might surprise you, or perhaps not, to hear of the variety of opinions being expressed out there by legal firms regarding use of the Internet for health care information. This is not exactly their strongest suit. However, I want to emphasize that in large part, we have been able to overcome these problems, albeit much slower than we would like to, at times. We have found that some of the programs that we have been supporting literally get delayed months by this issue of lack of understanding about the security in the legal firms.
What can the federal government do to promote the quality use of online health information management in rural America? I would suggest that there are a range of activities that the federal government could take and that this committee could encourage to improve directly and indirectly the capture, storage, communication and processing presentation of health information for the benefit of individuals, providers and communities located in rural areas.
Here is my short list of recommendations. The federal government, perhaps in concert with the state government and other agencies, should find ways to support care coordination programs that bring together rural providers, including hospitals, physician offices, health departments and long term care facilities with the goal of improving the health status of particular groups of patients such as the frail elderly, those with specific common diagnoses such as diabetes or congestive heart failure, and those who are disadvantaged with regard to economic or social standing such as those who have no insurance.
Best practices and collaborative efforts that show promise should be showcased and their leaders made available to publish the results. I firmly believe that the value of the Internet as a means to overcome the problems imposed by a fragmented health system is becoming so obvious and well known, that coordinated care programmers and their planners will by themselves invent the rural health information infrastructure and find Internet based solutions on their own, if given the opportunity.
Unlike any other information technology to date, the Internet combines an open architecture with very low marginal costs to sustain its use, making it particularly attractive in rural areas. What rural health care providers need is seed money and models for planning to get things started.
I would echo Tom's remarks about the CHINs. One of the problems with CHINs of course was technological, but another problem with the CHIN was the vision. I believe it is the care coordination around definite population of patients that will provide the glue to hold these provider organizations together. Otherwise, the political and economic portions of the rivalries will win out. We have to bring these models to these communities that are successful and show them how they can create win-win-win-win situations.
Secondly, I think the federal government should encourage grants and studies in rural areas that examine best practices for Internet security and privacy, for example public key encryption infrastructure and HIPAA implementation in rural areas. These are rather obvious, but I think they need specific focus and grant monies.
There is a lot that can be done to help educate leaders in rural populations as to the value of Internet technologies and to overcome the fear or lack of knowledge I alluded to earlier. Unfortunately, I have heard on several occasions health care leaders in rural areas express the attitude that, that is fine in Chapel Hill, but the rural folks in my part of the world are never going to use the Internet. These same leaders are sometimes very surprised by how many children are online right in their own backwards, in chat rooms and so forth.
The digital divide cannot be allowed to be a self fulfilling prophecy in rural areas. We need to think about how to overcome this kind of bias with education and public relations campaigns. I would like to see the federal government support informatics educational grants for rural health care professionals of many different kinds, and I will volunteer my company's involvement in helping those be successful, if so asked.
Four, we need to develop demonstration projects using the Internet for rural provider networks that show sustainable promise of delivering value in the day to day world. I have been a rural family physician, and I can tell you that it is a very daunting task. There are policies and practices that often discourage continuity and efficiency, and without access to informational resources that could make a difference in my practice.
We cannot expect success to occur if we simply add another three hours work at a computer to each rural physician's day. Combining informational systems that work on a new level of capability which we already have with innovative forms of reimbursement and financial incentives is really essential if we are going to move beyond isolated successes.
Thanks for this opportunity to talk with you. I look forward to any questions and discussion.
MS. CURTIS: Thank you. My name is Janis Curtis again, and I am going to do a little bit of a different format than my former colleagues. I have some specific points I want to put out on the table this morning.
Let me also give you a little bit of my background, so you will have a framework for understanding the comments that I am going to show you this morning.
First of all, I had the opportunity and privilege to chair the data committee that Tom talked about a few minutes ago that the state had as part of the health planning commission a couple of years ago, so I clearly understand and support the need to have a vision. You need to know where you are going in order to get there; it just doesn't happen.
I have had the benefit of augmenting my experience of the benefit of a vision with real-world experience since I have been at Duke for the last nine years.
Currently, I work in the information systems department for Duke University Medical Center and Health System. I have responsibility for budget preparation, HR responsibilities and also strategic planning.
Several years ago, Duke University Medical Center embarked upon the integrated delivery system strategy, the way many other institutions have around the country. We purchased two community hospitals, one in Durham and one in Raleigh. We also purchased 14 primary care group practices. We also had a vision that within the health system, having ubiquitous connectivity and systems and applications that interfaced appropriately and seamlessly and would get us to where we wanted to be. Again, a vision is good, but where the rubber hits the road is when you become very knowledgeable about the challenges that you have to confront.
So what I wanted to do with the time that I have this morning was to go through a couple of bullets and give you my reaction to the document that was presented. What I would hope is that you would ask questions after I finish, because it is easier for me to respond to specific questions and give you the perspectives that come from my real experience at Duke.
I wholeheartedly support the vision. The first thing that came to my mind as I read through the report was the identification of cost categories identified in the report. There were references to network costs, systems costs, application costs. One of the things that I have become quite knowledgeable about at Duke is, once you get the capital to invest and implement a network or to have applications developed or to buy a particular application product, or even to support the development of interfaces between those applications, it is the operating costs that kill you. We generally allow about 20 percent, or take whatever the total cost is to implement something, and establish or estimate an additional 20 percent for ongoing operating costs. Operating costs really sometimes is the sleeper. Many times when we have departments from Duke Hospital come and ask for capital, they generally underestimate the operating expenses associated with supporting that particular system once implemented. So one thing to keep in mind is the ongoing operation costs, because if you get the capital to install and implement this infrastructure that we are talking about, you want to be able to have the funds to support it after the fact.
DR. LUMPKIN: Janis, I'm sorry, is that 20 percent per year.
MS. CURTIS: Yes. That is a broad -- sometimes you're going to need increased FTE, sometimes you are going to need to replace hardware, sometimes you're going to need system enhancement, or whatever.
The other area that I wanted to pick up on that Dr. Kibbe referenced a few minutes ago is training of people. I think that many times, we underestimate -- us technicians and visionaries, we all envision, once we get the technology in place, you build it and they will come sort of a deal. That is really not the case, and that is not our experience at Duke as well.
We do have a number of clinicians and providers who -- and when I say providers, I mean the actual people who provide hands-on care, who are computer savvy, but not all people are who are involved in the patient care process. I think inherent in this vision that we have is that you capture data at the point of care, and then you progressively build on it and aggregate it, to the point that we can share it back and forth and have this huge system.
The problem is, we overlook the fact that people who are actually responsible for capturing Internet data are not always trained. They are generally the low people on the totem pole, and they are a linchpin to having good quality accurate data to be able to do something with it. It doesn't make sense to have a system where you can transmit inaccurate information. You want to be sure that you have accurate information. So training of people is a very significant aspect of implementing this vision.
When I wear my public health hat, I also wanted to make a comment that when I read this report, I took away an inherent bias in the report towards people who are computer savvy. There was reference in here that we needed to make sure that we had ubiquitous access to computers. That is true, but that is only one aspect of it. People have to feel comfortable using a computer and know that they have a responsibility to share information or to allow people to have access to that information. It is not just technology and training of how to use the technology, but to educate and train people about what their responsibility is, to make sure that the vision that we put forward in this report is realized.
Another point that I wanted to make has to do with the rule of vendors. Just to give you some idea, at Duke we are truly a multi-system, multi-vendor environment. I can't tell you how many different systems that we have. We spend a lot of time developing interfaces to be able to share information back and forth between the systems.
We recently purchased Raleigh Community Hospital. Raleigh Community had been a single system vendor and they had vendored what is called Medi-Tech as their hospital information system. Through no fault of theirs, but now that they are part of the Duke health system, we are making them become a multi-system, multi-vendor environment, and quite frankly, they are overwhelmed right now and they can't handle that. So I think we need to be cognizant of, as we move forward in terms of trying to implement this vision, what burden that puts on the smaller provider.
I appreciate Dr. Kibbe's comment about rural providers, but it is really all small providers, all small hospitals, all small physicians, et cetera. They do have computers, but they don't always have the level of computer savvy necessary to support a system once a system is put in place, or they hook up with additional systems.
The reason I brought that up is because we at Duke -- and I know that this is probably true and reflects many organizations across the country -- we are trying to move away from development of applications all the time, and we are trying to buy applications, only allocate resources towards development when it is going to give us competitive advantage, or it is something unique to what we have to do.
Taking that into consideration, you have to acknowledge the significant role that vendors play in terms of having to bring about that realization. The philosophies and the standards and the discipline that they bring to developing their own applications, there has to be some uniformity to easily share information back and forth between different systems and applications. So while we can have the need to do it at a provider level, sometimes our biggest struggle is with the vendors, whose systems we are buying, and getting them to make sure they can assist us and make sure that those applications interface.
When I read the report also, I picked up on the level of detail that is needed to achieve the objectives. I think, Dr. Lumpkin, you had mentioned something earlier in your introductory comments about the level of detail needed. I think we have to be very careful to balance the data that we need in order to achieve this vision and the burden that that puts on the provider to provide that information.
Many times, you will find that the systems that exist in these provider organizations, their data structures, their data systems, et cetera, that are comprised of data elements that they themselves felt were important to meet their objectives. So as we identify the need for additional data, we need to make sure that we are not overburdening those providers to capture this level of detail and extent to which they can benefit from that, as opposed to just meeting what our larger need is.
There is this need for money also to make -- or, I would like to encourage you to acknowledge the funds that are going to be required within institutions to make the changes to the internal systems that are going to be necessary to provide data and that we will decide that is needed, regardless of what that particular data set is.
Again, this is from experience at Duke. We believe that because an organization has computers, that all the needed data is computerized. It has been my experience that that is not always the case. Some providers are going to require additional support to help take data that exists, but it exists in manual form, to convert it into an electronic format to be able to participate and exchange this data electronically.
The key role of standards. I won't dwell on that, because I am sure that you have heard that in different hearings across the country that you have had. All I can say to that is, amen, we need standards, and I think the extent to which we can identify those critical standards that are required and adhere to them and endorse them, the better.
When I read the report as well, again, I completely support the vision, but also, the vision was overwhelming. I wanted to pick up on some comments that Tom Ricketts made earlier. We had a vision that came out of the state work that we did, and fortunately, where we are now, a lot of advances in technology have occurred that put us in even a better position to help realize that vision.
But I think it is going to be important as we go forward to acknowledge that we have to break the vision down into manageable pieces. I think that Tom made an excellent point earlier about how important it is to manage expectations. This is something that we have to do at Duke all the time, manage expectations of the -- and I'm saying physicians now, because a lot of what we are doing really relates to clinical systems, to make sure that we appropriately set their expectations about what technology can do, and what the applications can do to help meet their needs, just in general, but also out of the starting block. Many times, you implement a system and it takes several years of enhancements and customization before you get to the point that a physician's needs are adequately met.
I think it is important to begin to break the vision down into manageable pieces. The other thing that is important to recognize and get across to people who are going to be significant in helping to realize this vision is that all things are not equal. Certain things have to be done first before you can do other kinds of things. The extent to which we can break it down and begin to prioritize, we can also then make sure that the dollars are appropriately channeled to make sure that those foundation pieces are addressed first before focusing on some of the high end.
I think in one of the scenarios, there was a reference to a person walking in, and all this electronic automatic sharing of information, and your Palm Pilot and your PC and your this and that are all in sync very quickly. While that is a great vision, if I had a limited pot of money right now, I would opt not to focus my money there, and focus on some of the fundamental areas, like trying to make sure everybody can convert the minimum level of information from the menu format or from a hard copy format into an electronic format.
I had a conversation briefly before this hearing started with Dr. Deering about the return on investments and infrastructure. Again, drawing on my experience at Duke, it is very, very difficult to ask people to give you money for infrastructure. It has been --
DR. LUMPKIN: Did you say money for instruction?
MS. CURTIS: Infrastructure, technical infrastructure. It has been easier to this point, because as Duke pursued the business strategy to create an integrated delivery system, the need for a network to connect all the hospitals and all of the primary care practices was a given. So it was relatively easy to say, in order to do that, we need this money to extend the network out, we need these routers, we need these X, Ys and Zs.
But as that infrastructure has been implemented, it becomes more difficult to convince people how you have to maintain that infrastructure. So I come back to my support comment at the very beginning. People believe that once you spend a half a million dollars for routers, et cetera, that once you spend it, you don't have to go back and update those routers or replace those routers.
So I would encourage you to build in the notion of a scheduled replacement of that infrastructure, so that it is not all at once and it doesn't hit you all at once.
What else did I want to say about infrastructure? Just that it is important. I go back to -- I have always had a bias in favor of networking and networks. Many times I have had conversations with people who are so interested in application development, and believe me, I believe in applications. But they are so focused on the bells and whistles, and all these features, sometimes they omit the fact that in this distributed world, if you don't have a reliable network, it doesn't matter about the bells and whistles in the applications; you won't be able to get to it, you won't be able to transmit the data that you need. So I really want to emphasize how important infrastructure is.
Just a few more comments. Picking up on Dr. Kibbe's comment about level of computer savvy, he had made reference to some of the providers taking to the use of his application because of their familiarity with browser technology. I would just underscore, that is true. We always make reference, kids can do more than what their parents can.
The bottom line in terms of our experience is that providers want to provide care. We need to make sure that when we put computer technology out there to help them, that we also recognize that the more they have to learn, or if the application itself is cumbersome, that it is taking them away from what they are supposed to be doing and what they are interested in doing, which is providing care. So we need to recognize the level of computer savvy out in the community.
I had been asked also to comment a little bit about what government can do to help make this a reality. Actually, Dr. Kibbe made a couple of comments that I would support wholeheartedly. One is to fund proof of concept projects and pilot demonstration projects. Again, that is consistent with the notion of breaking this vision down into manageable pieces, and making sure that where we invest our money long term is something that has been proven to work.
The other area is to continue to promote and in some cases to develop the policies necessary to support the technical solution. Again, sometimes the technology is much further ahead than the supporting policies that are needed to take full advantage of that technology. I'm sure you have heard that over and over again.
I think the experience that we have right now with security and privacy is an excellent example of that.
Those are my comments.
DR. LUMPKIN: Thank you. Questions? Well, I've got a bunch. Jeff, go ahead, Jeff.
DR. BLAIR: While you're asking your question, I'm going to think through so I can articulate mine a little more plainly.
DR. LUMPKIN: I guess my first question goes to David and Janis. That is, to what extent do the systems that you are implementing replacing paper, or are they in addition to paper?
DR. KIBBE: I'll take a shot at that.
DR. LUMPKIN: Please.
DR. KIBBE: Canopy is a system that helps -- it is an ASP model, a remote software application that requires nothing of the client other than the browser and access to the Internet. Utilization management, disease management and case management done in most health care organizations -- hospitals, integrated delivery systems -- is now a combination of paperwork and electronic systems. Data is taken off of machines by case managers, by utilization managers, put in paper format, sometimes scribbled down, then put back into computer systems. In some very small communities it could be 100 percent paper, although even there, there is some information coming to the case managers off of the patient accounting systems.
In some organizations, it is much more complicated than that. They may be using three to four systems simultaneously over the course of a day, as well as interacting with information systems that are not in their organizations, such as the systems that exist in insurance companies. So it is really a very mixed bag.
We think that that is a real problem in terms of utilization in case management processes in hospitals regarding HIPAA's security and privacy components. These are activities that are by definition very insecure. Information is taken off of a computer without any session or audit trail, then it is put down on paper, put in a box. It is open to the public. Susan comes along later on, writes it up, hands it to somebody else, somebody else puts it back into a computer.
So I think that one of the things that we are helping our clients do is envision a redesign for case management and utilization management, which involves working entirely within a ASP software application.
MS. CURTIS: Where we are at Duke right now, we are in transition. Our intent is to move away from paper, but that is something that takes awhile.
One of the things that we have done is, we have developed what is called accommodator repository. It is not a data dump for all clinical information, but it is a place where we draw data from other -- key clinical information from other department processes into this accommodator repository.
In addition to pulling data from existing systems, what we are also working on and have implemented as a matter of trying to get it out to get many of the doctors using it is, we have an ability to, once they do dictation, to automatically import that electronic record into the accommodator repository. Then we build the applications so that physicians can look online and look at the transcribed dictated reports, they can look at some of the key clinical information relative to lab, radiology images, et cetera.
We are in like I said transition right now, because while we developed this to help physicians to provide care and clinicians to provide care on the spot at the point of care, there are still the JCHO requirements, et cetera, that require some stuff to be in paper. So our intent is to eventually be at a point where it is only electronic, both in terms of meeting the patient care needs, but also meeting whatever accreditation needs. We're just not at that point right now.
But that is again what I was saying, where you want to allocate your resources for development, those precious resources. So that is where we are pushing a lot of our development right now, is to make it so those documents can become electronic from the very beginning, and get in that accommodator repository.
DR. LUMPKIN: You just said something which I think is the first time we have heard this, about accreditation requirements being a barrier. Maybe not at this meeting, but I would appreciate it if you could send us by e-mail or whatever any of the specifics on those specific requirements that are barriers.
MS. CURTIS: And I don't mean to be nitpicky; rather than referring to them as barriers, I would say they are requirements that we have to take into consideration. I am really being nitpicky, I realize that.
DR. LUMPKIN: Well, but you can dance around it, but I would particularly say that to the extent that we have federal, state or accreditation organization requirements, which we certainly do have in Illinois, that mandate paper, that is a barrier. Particularly in the environment after the federal legislation on digital signatures, we should have an environment in which we can move away from that.
A recommendation from this committee may highlight those, and prompt those organizations to use an alternative way of meeting certification. I think they would be open.
MS. CURTIS: That's fine. We have JCHO coming up, so I don't want them to read that I made reference to JCHO as barriers. I'm trying to be good here.
DR. RICKETTS: This is probably unexpected by David, but I am the evaluator of some of the programs that he is involved with providing the data system support to. The Canopy system is seen as a good way to assess the clinical efficacy of some of the reorganizations and the programs that are going ahead.
However, the implementation that I have seen is on an experimental basis by one of the facilities at least that is doing this. In other words, they want to see what their paper system yields, as well as the Canopy system.
So if you were to ask does this replace -- generally, the transition I would say in medium to large institutions usually does not replace that. There is usually an experimental and high cost implementation period.
The results of these kinds of comparisons need to be distributed much more rapidly and broadly to avoid people having this duplicative cost. But I would say the standard operating procedure is to duplicate data entry at least, if not analysis for the clinical decision making.
DR. LUMPKIN: And that is standard procedure even if you have a paperless system and you're moving to another one. You've got to have the new system prove that it is actually working before you stop the double data entries.
Jeff, did you have your question formulated?
DR. BLAIR: Thank you. I guess it was this last weekend when I got my reading done, I ran across an announcement that was especially thought provoking. Like many of you, I have been immersed in all of the implications of moving towards the Internet and all the technologies that are associated with that, and trying to use application service provider technologies to be able to reach out to where Larry is and smaller group practices in cost efficient manners.
Here is this article, and I don't know more than what I am about to repeat to you here, so I'm going to ask you for your insights and perspectives, and help us interpret this.
The announcement was that the American Hospital Association in response to frustrations and complaints with health care providers moving towards Internet technologies, has -- in particular it was concerns about confidentiality over the Internet, reliability over the Internet, and limited data rates over the Internet. They have decided to provide an offering of a value added network at low cost, which would be able to provide network capabilities that would inherently overcome those limitations of Internet technologies, at least the way they exist today; we don't have Internet two yet.
I thought, my goodness, with all of the things that I have been hearing for these last several years about how revolutionizing Internet is going to be, for the AHA to make this announcement at this time, it was a surprise.
So could I please have your insights into this? Is this something we should just consider to be a minor incident on the road to the future, or is this something we have to really consider?
MS. CURTIS: Just for clarification, minor incident relative to AHA taking that course?
DR. BLAIR: I'm sorry?
MS. CURTIS: A minor incident relative to AHA taking that particular course of having a VP in, virtual private network?
DR. BLAIR: Yes. How should we understand this event?
DR. RICKETTS: I think that it is happening far more often than just AHA. This is the way in which institutions and organizations can realize the value of electronic intercommunication, and who have the capacity to set up standards and allow it to expand or grow to their needs.
The fact only is that it interfaces at some point with the Internet that makes it maybe seem like it is different because of its containment. But this is more than likely the way in which things will go as systems find that they can improve connectivity within their controlled environment, and control throughput and control the training up and the standards across that. It only makes sense for any organization which is trying to get value out of its communication system to go this way.
The Internet standard will be roughly equivalent, but I know that we are having difficulties now with Internet standard and some of the new virtual networks within our organization that has to communicate with a number of groups. LINUX is not solving all the problems.
DR. BLAIR: Are you saying that this is complementary, and not a different direction?
DR. RICKETTS: It is complementary currently, as people work from an essentially common standard. But standards are diverging, not converging.
DR. BLAIR: Really? Can you give us some examples?
DR. RICKETTS: Some of the more imaginative adaptations of LINUX operating systems or in some of the user processes that people are developing, the JAVA alternative that Microsoft is working with, have difficulty with inter-operation on an Internet standard. Anybody who does the Internet and knows when you had frames incompatible systems that this next development is creating some divergences that are going to have to be worked out.
So I think you can see it yourself. To work into a system that is say infrared based in an organization that is firewalled out, they will have built a specific translator. That is our system; we have built our own translator and our linkages to manage ourselves within our LINUX environment. That is the kind of thing people will have.
So I think that there is a potential for divergence, as people find ways to improve for the unit in which they control the information, and to make things work faster for themselves. They are not worried that maybe two steps away, there is a little bit of incompatibility that will sometimes translate into inability to use across platform.
I am not a technical person. I am the chairman of our IT system, and I am on the committee for the IT system for the University of North Carolina, or at least was until I made such a nuisance of myself. But now I know that these problems have cropped up constantly.
DR. BLAIR: Can I also get reactions from David and Janis?
DR. KIBBE: Sure. I take that action and announcement by the AHA as very positive, because I think that they are recognizing that they have to supply -- they have to get in the mix, so to speak, with their member hospitals, finding solutions for creating local Internet solutions for community based systems.
There is a hidden secret in all of this. It is sort of a dirty little secret that people don't want to acknowledge, although I think I acknowledged it earlier. People in health care really don't want to share information a lot of the time. I think that any community we have worked in, we have had to deal with the fact that people see their own information -- that is, providers see their own information in very proprietary terms. As they start to think about who might be sharing or seeing that information, they get very worried.
On the other hand, the consumer health movement is pushing very, very hard as we all know towards more sharing of information. Ultimately, I think people who have illnesses, people who are seeking information about illnesses, people who are seeking information about their own treatment, are going to push everyone in the direction of finding out ways to communicate information.
A lot of people don't want to do that still. I think that the hospital industry in general has been very tentative up until now, thinking about ways in which they would acknowledge that the Internet is going to be a set of technologies that are used in this way. I think what they are doing is acknowledging this, and trying to put their own brand on it, basically.
I do believe that there are some divergences developing within this environment that have to do with languages, like JAVA for programming, that have to do with standards for presenting data, HTML and so forth. I think those are really very minor glitches. I don't see those standing in the way of the momentum that is developing towards using the Internet in all of these environments as a mechanism for not just displaying information, but transferring the tools for managing that information into various locales.
One of the problems that the hospital industries have -- I have visited about 60 hospitals in the last year, most of them 200 to 400 bed institutions. I have not been in a single hospital that didn't acknowledge that they have a total mess with their information systems internally. This is not the place to go into the details of what that mess is, but there is a real feeling of just being overwhelmed, not having enough people to manage, too many systems. They are beginning to look for opportunities to outsource as much of that as they can.
Of course, outsourcing is a real double-edged sword. This is true particularly in health care. So I think we are going to see an ongoing set of moves and countermoves and technological changes that -- but they will inevitably move towards a more outsourced information system infrastructure for hospitals, because that is the only economic solution.
DR. BLAIR: Janis?
MS. CURTIS: Clearly, this is looking at it from a practical standpoint. I view VPNs, virtual private networks, as one option that is worth exploring and considering.
I think Tom's points were well taken. All options now always have to be considered relative to security and privacy. That is just a given. We find ourselves in a situation of looking at VPNs because it was a very cost effective alternative for us.
I had mentioned earlier that we have two other hospitals and 15 primary care practices that we owned. We were under the gun to get them connected to our common services network. For the majority of them up the starting block, we did 2-1 lines. The cost is killing us.
What happened was, at that time also, there were significant concerns associated with the Internet. Here we are, several years later, when Internet has improved to a certain extent. What the virtual private network is, is a sort of subset within that. It becomes a better cost alternative option for us.
When we were looking recently at connecting some clinic sites, we had to look at the cost of capital, how much it was going to cost, they needed work stations, they needed these applications, they needed a printer. We needed to work with the local telecom company, et cetera. The cost really started to be enormous even though there was a business need. So we started looking at VPN as an alternative, and it turned out to be much cheaper to go that route.
Again, we are still evaluating the security concerns. But the way I look at right now, it would be inappropriate and short sighted not to consider VPNs. It would be irresponsible to completely embrace it, but I do think it represents a viable option that warrants close study.
DR. LUMPKIN: We have only got time for one more question.
DR. SONDIK: Tom, you said very interesting things. All your presentations I think were very useful. In terms of having all of this process make a difference, you said some things about working with decision makers vis-a-vis their expectations, not overselling and managing expectations.
I wonder if all of you could briefly address how you think we should go about that, we as the country should go about that, beginning at the top, with making the kinds of investments that we need in this. Or perhaps we begin the other way. Perhaps we begin at the local and the state level to make these investments.
But you have raised a real concern for me about overselling, if you will.
DR. RICKETTS: Just briefly, I think that that problem does exist in communities where people are being asked to either purchase systems or to give the go-ahead or to support these systems, not really knowing what they entail.
The problem of how privacy came up and hit us squarely in the face and was very much a concern meant that there was very little basic education about privacy problems and the use of medical records, and their actual flow of how they were used. So we needed to educate people who were in some position to make either a cooperative decision to allow their system to join or to purchase or to work with even supervising a county health department to have concerns at that level.
Then there are folks who are appropriating or allowing the coordination of say vital statistics at the state level and how they can be used for the benefit -- for public policy benefit. I think that this is a situation where best cases should be presented to the folks, to see how some decision processes work through when data were available at these levels, so that they can see how it really works.
I think people are moving into an unknown land, and they would like to get a sense of what happens and where they are going, rather than what we are presenting to some people. We are presenting an ideal vision on the one hand, and then we have doomsayers on the other hand who are presenting problems of ubiquitous health information availability that is going to ruin peoples' privacy. We really do have the in-between of, here is how it worked for this situation here in this community. Those situations are the best things for folks to get a feeling of, what am I dealing with.
But then you also have to anticipate who these policy makers are and these decision makers, and that requires you to work at the practical level, of who is doing things at what level. Often an information system will start at the top and disseminate across a system that is not usual and normal for policy dissemination, and it should parallel the normal policy things.
So it is usual common sense policy systems that would be the people to target.
DR. KIBBE: My comments would be very similar to that. I think we need to have a very patientcentric focus. In other words, the real benefit here from managing information better is to manage patient care better. The tactical difficulty, the expectations I believe that have to be managed is that we have way too few examples of how managing information better helps not only the patient, but helps providers, helps the hospitals, and helps the community.
It takes a community to manage a very sick person. It takes a community to manage children who have significant chronic illnesses. It takes a community to help elderly people find the right resources that allow them to die in dignity. I believe that what we need are to take examples where information systems are used not only to improve the outcomes of patients, but are used to actually collect the data that can then go back to the physicians and back to the hospitals, and merge with claims data and cost data, and present those to community leaders in a way that gets them to buy into that vision.
I think this can be done almost as a PR campaign, provided you don't mix apples and oranges. Those things that are going to be potentially relevant and exciting to a community hospital with a nursing home, 400 beds, 58 physicians on its medical staff, et cetera, are very different perhaps than the situations that would be exciting to a major medical university.
So again, in line with perhaps what Janis was saying, we need to pick through what projects are meaningful to what kinds of constituencies, and then go about the business of convincing them that this works.
MS. CURTIS: I certainly don't disagree with anything that Tom and David have said. The one piece I would offer is, have demonstration projects. But I think it is also important to communicate when those projects are being described to people, to get them to understand that there is no one solution.
An appropriate solution for a community locale is one where you have a corps that abides by certain standards or adheres to certain principles or achieves a common set of objectives. Above and beyond that are features, functionalities, policies, procedures and whatever that are tailored to meet any particular community's problems and challenges.
I think one of the things that happens is, when Tom comes to my community and he says, we use ABC system and X, Y and Z, the first thing I'll say to him is, yes, but my community is different. We have X Y and Z, or we don't do blah, blah. What happens is, I reject it out of hand, because there is some piece of what he did in the solution that he adopted for his community and I'm saying it is not going to fit in my community. If I were to tease it back and I find out, here are certain aspects of that solution that will meet some of my needs, and then that other quarter, customized or tailored features or functionality or whatever, policies, to meet Tom's community's needs I can do the same thing to meet my community needs.
So what happens is, it becomes a solution that is towards the common good, but yet is amenable to meet my unique needs. I think what happens is, many times we fall into this all or none framework or way of looking at something and it is like, here is the solution. What happens is, people reject it out of hand because they have their own particular challenges that they are dealing with. Then they can't see the forest for the trees anymore.
So I am in support of the specific examples of how things have worked in particular communities, as long as it is explained in such a way that people understand, there is a certain part of that that was customized to meet Tom Rickett's community's needs, organizational needs or whatever, and that I have that same ability as that solution is applied to my environment.
DR. BLAIR: Should we draw the conclusion from what you are saying that it might be well if we look at a national health information infrastructure that we have to build support for this from the bottom up, instead of trying to come out with solutions and ask people to react to that? Is that what you're saying? That we have a better chance to --
DR. CUSTER: I'm a firm believer in working with systems from both ends, I really do. I think that there is a benefit and role that the federal government can play in terms of articulating that vision and why it is in the public interest and the best interest of public health to move forward in a particular direction. The reality is, health care is delivered locally. To achieve this objective the strategy involves strong support and active participation at the local level. So it is something that you can't force down, you can't mandate it, but at the sam time if you wait for all the local folks to make all the right decisions, it probably will never happen.
So I am a firm believer in the synergy between the two, and you kind of have to work both ends at the same time.
DR. RICKETTS: Could I just -- I want to get this in because it is something I have been working on. I said, to give the positive vision, but one thing we are trying to use David's work on is, you are probably familiar with the term ambulatory sensitive condition admission rates. Basically, it is when a person goes into the hospital for something they probably shouldn't.
When we look at those, and we say what are the reasons for that, we find that the most common are social services, pharmacy, internist and specialist. That is the kind of local value that people can be demonstrated. Then you can sell them what will give them that information.
I think you have to sell folks the need to communicate first, before you sell them just the information that comes out. I think we have been selling information before we sell them what they want, and they have to be shown what they want, which is how to fix this problem that I don't know how to fix.
DR. LUMPKIN: I actually feel like I might have to seek professional advice from Richard, because I am of two minds on this discussion. I think it has been a very useful discussion, and part of me wants to keep on, but the other part which is charged with keeping us to the schedule, which I have done a lousy job of, says that we have to end and move on to the next panel.
We have gone through our break and way past the break, so we're just going to push on. I'd like to thank the first panel for coming. I'd like to suggest that maybe if we do have the opportunity, if you aren't pushed to immediately leave, I certainly would like to continue some of this discussion maybe over a working lunch, since there isn't a lot in the neighborhood around here for people to go. But if we all have to leave, we appreciate it, and those of you who can't stay, we also appreciate that.
So thank you, and if we can go on to our second panel, if the panelists will introduce themselves, starting off with Chris Mansfield.
DR. MANSFIELD: First of all, I have to say I am definitely honored to be here, and a bit baffled I am here; I certainly had a difficult time finding it.
DR. LUMPKIN: Could you introduce yourself?
DR. MANSFIELD: Yes. I'm Chris Mansfield, and I am an associate professor at East Carolina University in our Department of Family Medicine and director of health services research and development.
I have been involved with data I guess ever since 1967 when I was a VISTA volunteer and had to become a health planner, to convince powers that be that we ought to have a community health center. So I learned a little bit about community epidemiology then, and then went on to direct that -- and later become a real health planner, later a professor. I teach at ECU in health policy, health administration, and direct our Center for Health Services Research, which is our population focus for ECU.
East Carolina University, a regional university serving most of Eastern North Carolina, an area that has a considerable amount of pathology that exists in North Carolina, a new medical school, but one that is charged with improving the population's health. That is part of our mission. Our university health system of Eastern North Carolina centered around Pitt County Memorial Hospital, the flagship has as its mission improving population health.
So that is essentially my background, the paradigm that I come from. I am actually trained in public administration, but all my life have been involved in public health.
I first became aware of what you all were doing when I attended the Healthy People 2010 launch conference. I have to say, it was probably one of the best conferences I have ever been to, partly because it snowed and we were stuck and we had great services. I also have to say, the best presentation at that conference was delivered by Jeff Blair. It was my introduction to what you all are doing, and it was crystal clear in Jeff's presentation. I can't hope to do as well as Jeff did.
But what I would like to do -- and I don't have anything prepared in terms of handouts, but I would like to talk to you about some of the vision issues and challenges, trends and gaps, and speak to them from a conceptual, practical and technical point of view, starting with Healthy People 2010.
I have been really amazed at how little empiricism there has been in regard to the two overarching objectives of Healthy People 2010, first being increasing life span and quality, and the second being eliminating disparities.
Now, what I have done is, I have taken some slides that I have used in a presentation just recently at APHA, and put them up here. I'm not sure what order they need to be in. I was not sure at all how you all were going to be doing this. But I did see that you had a reference in the vision document to Evans and Stoddard's model, and I would argue that this is a very good way of focusing it. So if there is nothing else up on the screen while we talk, I would like this one to be up. But I will come back to some of the issues in terms of the empiricism involved with Healthy People 2010, and helping communities pursue the Healthy People 2010 objectives for healthy people and healthy communities.
I would skip to basic challenge. This is what we have seen in the last century, incredible improvement in the survival curves. This I think is the basic challenge that we have before us.
Jeff, if you're not familiar with any of these, I can explain them later, but you can clearly see how much we have gained in the space of a century. If we look at it by race, we see a different picture. The dotted lines are whites, the solid lines are the non-whites. You can see that blue line in 1997 for blacks catches up to where whites were in 1950.
So one of the ways we need to conceptualize this in terms of disparities is, you've got a chronologic gap, perhaps because we are all getting healthier, we are all seeing longer lives. When we get to North Carolina though, this way of looking at it is a little bit more difficult to do, because we don't have historic data. So one of the things I think we need to be doing initially immediately is thinking about whether or not we have good systems at the state level that can parallel the Healthy People 2010. Some states can, some states can't.
Jeff, this is just a survival curve for whites and non-whites in North Carolina. We can't go back very far. We can take a snapshot, but we can't provide a moving picture. One of the real challenges I think is to be able to see this longitudinally, historically, and be able to project it into the future.
Now, one of the metrics that I think is lacking from this, and maybe you all can have an impact on it, is the notion of measuring life span in terms of premature mortality. The survival curves are nice and are predominantly a snapshot, but they are not particularly useful at the community level, where we work.
One of the things that we had done was to look at the years of potential life loss before age 75 and project it. I happened to have to do this for a paper I was doing for American Journal of Public Health. This is what we see for the country. Green is good, red is bad. There is clearly a geography to premature mortality. This is 3,080 counties.
One of the things that I am particularly struck by with the Healthy People 2010 is why the benchmark or target for premature mortality got dropped out. If somebody here can tell me, I would very much appreciate it. It was in the draft, and it did not occur in the final document. Since it is the first overarching objective, why? Why can't communities have a benchmark for where they are in terms of life span? I think this is probably one of the best benchmarks we have.
DR. LUMPKIN: Since Mary Jo is not here, it was her fault.
DR. MANSFIELD: Oh. Is she coming back? I want to talk to her.
For instance, if you look at North Carolina, we see North Carolina ranks 40th. GAO had decided that premature mortality was the best single measure of a community's health status or a state's health status, and it would be useful as a guide for resource allocation. Perhaps that is the reason it was dropped out; people really didn't want to quantify resource allocation, I don't know.
We thought it particularly useful. It can be done by race. We did it just simply from area resource file data. One of the things that I want to talk about is making the data available and accessible to people in easy formats. Area resource file on a CD-ROM was particularly useful.
Taking a look for instance at another objective, say reducing coronary heart disease to 166 per 100,000 population, this is how it looks in North Carolina. Is that a great challenge, given that we have half of the counties that need to reduce 20 percent or more? No, it isn't really because this is what has happened in North Carolina over the last 20 years. These are data that we have been able to get from John Booker and put into from SASS spreadsheets and manipulate, and begin to track the disparities.
One of the things that I would like you to be thinking about is whether or not you can help communities benchmark themselves on the two most important goals of Healthy People 2010 -- life span and disparity. This happens to show a regional disparity in North Carolina in the East, trailing behind the rest of the state by a factor of about 20 percent on a rate ratio. One of the things that we need to do is get out some understanding of what the right metrics are for measuring disparities, what ratios, percentages.
Rate ratios are pretty useful. Here we use them just to show for coronary heart disease how we are doing in Eastern North Carolina, the region there, plotted in red, is Eastern North Carolina against the rest of the state. So you see we have grown from a 10 percent disparity to a 20 percent disparity in terms of region, a rate ratio of 1.2 to 1 in 1998.
By gender we see some progress on coronary heart disease, but by race -- and again, empiricism virtually absent in the Healthy People 2010 document in terms of where we are with disparities, looking back for sure and even looking forward.
Here for North Carolina we see disparity, rate ratio, going from null in 1979 -- this is blacks versus whites -- to a 1.2 to 1 ratio in 1979. But that just gives a picture of where we have been. The challenge needs to tell us where the disparities are, and this is what we have been able to do. The bull's-eye there is the target for 2010, but of course that is in the wrong place. We want to move it out there.
Another thing that I thought has been lacking is any kind of projection of where we are going to be in 2010. What we see here is for coronary heart disease, all but black men are likely to make it.
Now, these are pretty simplistic measures. This is just simply a linear regression trend and an extrapolation with a two standard error bar. But I think we can safely say, except for non-white men, we are going to meet it if we don't do anything but what we have been doing. So maybe because of lack of vision, we may have set our sights too high. The goal was too high, and maybe we should be rethinking what the benchmarks ought to be.
DR. LUMPKIN: Could you go back to that slide? Are one of those lines the mortality for all races?
DR. MANSFIELD: I'm sorry, I'm going too fast. The top two lines are men. The black bar is African-Americans, blue is white men. You see there a crossover in coronary heart disease mortality, about 1985, black men versus white men. Then the lower two lines are women.
What you see is a disparity gap increasing when you look at it by gender, an increasing disparity gap. So it is not just the fact that a disparity exists, it is where that disparity begins and what the slope of the lines are relative to each other, to find whether or not the disparity is increasing or not.
Here we were able to take a look at a single county in North Carolina, and the solid line is just a trend line stuck on there to smooth out the data. The R squareds are not big, but these are the data. The blue line is Hyde County, a small county in Eastern North Carolina of about 5,000 people. The red line is Orange County, and this is the racial disparity rate ratio increasing for both, but it started off in Hyde County that whites had the greater disparity, and as a matter of fact, still do. The whites still have the greater disparity in Hyde County, African-Americans in Orange County now have a disparity rate of 1.6 to 1 on the coronary heart disease.
This just takes us back in terms of Eastern North Carolina to looking at the issue of disparity. We find that racial disparities are actually greater in the rest of the state than Eastern North Carolina, where the population is typically a third non-white. But that is only because the whites are so unhealthy also. So if the whites are the denominator, their rates are abysmal, too.
Now, we have both a challenge of burden disparity and disparity trend. What we have been able to do here is map in two dimensions, mortality and the disparity, highlighting for instance those counties with 25 percent variance from the objective for in this case stroke, shaded the white to dark green, and then superimposing upon it the counties that have a higher disparity ratio.
So these are data that are pretty easily grasped in a policy arena. The next extrapolation of this of course is taking it and showing the direction of trend as well. So which counties have the high disparity have the high burden to begin with, but which have a disparity trend going in the wrong direction, whether or not you can bend the trend.
In summary on some of these data, I think years of potential life loss, premature mortality, is a very useful metric. It is easily grasped, and certainly highlights for us in Eastern North Carolina just how poor our health is, in terms of premature mortality. If we treated Eastern North Carolina as a state, and there would be some 13 that would be larger in terms of population, or smaller in terms of population, we would end up being 51st. That is something you can show your county commissioners, your area legislators, and it is a useful way for communities to begin to see how bad they are in relation to other communities.
Another way of looking at it would just be excess mortality. If we took the western portion of Eastern North Carolina as the standard and just created a standardized mortality ratio and cranked that into excess deaths, we can express that such that in terms of all-cause mortality -- that is what this one is -- there are about 1600 excess deaths in Eastern North Carolina compared to the best part of the state.
But the real challenge is getting back to those survival curves. What we would hope is that in the future, the curves get squared and squished up against each other, whites and blacks together. That I think is the health policy goal for any population group.
Do we have the data to do that? That is the challenge that I am presenting to you all. It is not just the mortality, it is the morbidity and the disability data that we need to get at, because we are all getting to live longer, but at what quality of life. So the challenge I think is whether or not we can compress the morbidity curve up against the mortality curve and how are we going to go about measuring the disability?
The mortality is there because we get the certificates filled out by the funeral home directors, who send them to the health department, who send them to John Booker. But how are we going to gauge morbidity in a community?
Another David, not David Kibbe, but David Kindig, believes that we can purchase population health if we can first measure it. That is a real challenge. So what I am throwing out in terms of your visioning is whether or not you are helping us pursue the measures of disability, morbidity as well as just mortality.
These are the existing measures that we have. Can we -- and this is where statistics come in -- can we take some of these things and generalize them? Some of these don't have to be generalized. The premature mortality, one of the beauties of that is, that is all deaths. It doesn't generalize to anybody; it is just simply what is. But when we get down to measuring morbidity and disability and functional status, we can't measure that in a whole population. But we can perhaps take it from groups from which we can generalize.
So I guess that is what I have to share in terms of the graphics. Let me leave this slide up, and move on to talk about -- I wanted to make sure that somebody was addressing in the vision the collaboration with other departments of DHHS on Healthy People 2010, and providing an information infrastructure that will help not only DHHS at the national level measure what is going on, but help us at the local level.
We have for example in North Carolina Healthy Carolinians group. We have communities pursuing this. We definitely have some challenges on measuring the quality of life. I'm not sure -- Fort Collins, Colorado and Los Angeles have been able to do it. I'm not sure that anybody has really approached it here in North Carolina. Maybe we need some collaboration with John and Tom Booker and David Kibbe to do that, because it definitely goes back to the data that exist in health care systems to be able to do that.
But also, the issue of measuring health services availability in a community and their use. One of the things that we did in North Carolina not long ago, and I certainly am sorry that it happened, I didn't have anything to do with it, but that was privatizing the hospital discharge data. It has become more and more difficult to get hold of. Communities have a very difficult time getting hold of it. A hospital may be able to provide some of their data from what used to be the medical database commission, but you can't get a good handle on it system wide. So I think privatization of the hospital discharge data took us in the wrong direction.
The next thing is gauging access. We had what, 480 objectives in Healthy People 2010 and 28 focus areas, 20 leading health indicators. At the bottom of that list is access. We still have a very difficult time gauging who does not have health insurance in a community. We rely on the current population survey of the Census Bureau to extrapolate it. But I think there are ways that we can get a handle on it. Who knows what direction public policy will go at the national level, but certainly the access issue is going to come up again. I think we ought to be able to better measure it the next time we talk about health care reform and the expansion of health insurance.
Helping communities map their assets. This is something that David mentioned. It takes communities to grasp health care utilization data and manage patients through oftentimes.
When we do community health planning today, we need to do the community assets mapping, and then just not leave it. We ought to be able to use that assets mapping as a way of linking people to services.
Health literacy is going to become -- I guess it is already a buzz word. It could become more of a problem if we go more to defined contribution for folks than defined benefit. It is going to get more and more difficult just to negotiate the health insurance system. I think we can empower people with a better grasp of that, and I think we can use the Internet. Certainly in Eastern North Carolina everybody does not have access to the Internet, but I think everybody knows somebody who does.
It is not a digital divide that is the problem, because people get digital signals in the poorest, most run-down shacks that you can imagine through a satellite dish for cable TV, or digital signals to their cell phone. It is more a skills divide, and a way of plugging people in to the people who understand how to negotiate the system. I think the Internet is simply a way where we can plug care managers in and then get people to negotiate a health care system.
I am envisioning community resource directories online, available in every physician's office, available to every care manager, available to lay health advisors and faith-based groups, so that everybody can understand what options we have at end of life, or what options we have for cancer treatment in this particular community. So I don't think we have to be digitally literate to use these.
There are two other things I wanted to cover. I've got some technical issues I could go over, but definitely one that I think is lacking is, in the vision data in disaster. I go back to the flood we had last year in Eastern North Carolina as an example. Both in the immediate incident, there was a data gap. We had lots of people come in with FEMA and the American Red Cross, but they didn't know the health care system. They didn't know who to communicate with. It was lucky we had some physician directories that we could plug people into, because we were absolutely reliant on folks from Chapel Hill and all the rest of the state, but they did not know the territory.
So I think being prepared in terms of health disasters is another thing that you might consider. And following up on the health disasters, it has been very difficult to track chronic disease that may have occurred as a result of the flood in Eastern North Carolina, partly because of confidentiality issues with American Red Cross and FEMA. We could not track patients who were actually displaced, other than identify them in our own clinics. So that might be an important issue.
It gets to the final point, and that is interagency relationships. I would ask, does this vision include all branches of the federal government. We know it doesn't include all branches of the state government. We are going to have to have lots of laboratories, lots of state laboratories to work this out in. But it certainly could involve all branches of the federal government.
Specifically, I am asking whether or not you've got
DoD cranked into this, because there is a population in the military that the military wants to maintain as healthy for readiness purposes, but it is also a tremendous opportunity to track longitudinally what happens in a person's lifetime.
I don't think the military has embraced Healthy People 2010. There are three Surgeon Generals that David Satcher could be talking to, and I guess there is a Secretary also, an Assistant Secretary for Health in DoD. They are a population that we could be tracking, and it could be important to understand what goes on in the military experience, and does it carry through into civilian life. So that is another place to look at whether or not you have covered the bases.
That's all I have. Thank you.
DR. LUMPKIN: Paul?
DR. BUESCHER: I'm Paul Buescher. I'm a statistician in the newly renamed Center for Health Informatics and Statistics in North Carolina. I have worked in public health statistics for 20 years in North Carolina. My comments are coming from a state government perspective.
I have provided a copy of some brief written comments to Dr. Lumpkin, and I will summarize those now.
My comments overlap with some that other people have made already, so I won't try to eliminate the redundancy, but perhaps just reinforce some of the things that other speakers have said. Certainly it is a very good idea to have a vision, but as other people have mentioned, thinking up a vision is just the first step. The real challenge comes in terms of providing the resources and the commitment and the political will to carry that out over the next decade or more. So I'm sure you are all aware of that, just having a vision but not carrying through simply gets peoples' hopes up, but doesn't get the job done.
The report correctly states that increasing geographic and demographic detail of health data is needed, and also recognizes the expense and technical difficulty in obtaining such data.
There needs to be more discussion in the report of two issues. One is resources, and the other is statistical instability of small numbers. Who will pay for collecting data at smaller levels of geography for purposes of local needs assessment and action? If you are talking about surveys such as BRFSS, then those are very expensive, and somebody is going to have to foot the bill for collecting those. We already have vital statistics data at the local level, and there are complete counts, but if you are talking about implementing other data systems that are going to collect population data, who is going to pay for that is a very important issue.
Then once the data is collected, how useful will it be, given that small numbers of events in a small geographic or demographic category may lead to very unstable percentages and rates. Even with the complete count of data, you have random error and percentages or rates may be not very meaningful if you're talking about a very small population group or a very small geographic area. Local data users in particular need more education on statistical issues related to small numbers.
A second point is that the report indicates that data must be provided back to communities, local governments and health care providers to maximize data access and ease of use. Certainly getting data back to the people that are going to use it for local decision making is very important, but there is another point that probably should be emphasized in the report.
A key principle of data quality improvement should be emphasized. That is, giving data back to the providers of the data shows them that it is being used. A lot of times, people complain that they are submitting data to the state and it just goes into a black hole and they never see anything out of it.
If providers of data know that the data is being used for policy or other decisions, it is an impetus for the data providers themselves to improve the quality of the data, especially if the decisions affect them.
There is a feedback loop where more accurate data leads to increased use of the data, which leads to increased visibility of the data outputs, which further improves accuracy at the source. So it is important that the people where the data is coming from know that it is being used and particularly if there are decisions that will affect them. It is an impetus for them to improve the quality of the data.
Related to the issue of providing data back to local communities and other users, there will continue to be a need for hard copies of documents and reports, in my opinion. This should be emphasized more in the report. I think it is mentioned in one place, and certainly trying to increase electronic means of using data on the Internet is very important. But there is a discussion of the so-called digital divide or the gulf between the technological haves and have-nots. If information is published mainly or only via the Internet, many citizens and local users will be excluded.
As the report states, some people are able to find information and use it to make informed decisions about their health. Others lack the equipment and skills to do so. So I think that for some time to come, there will be a need for hard copies and printed publications to complement the Internet and other means of providing information, particularly when you are talking about local data users.
The vision report recognizes that data derived from systems established for non-statistical purposes such as payment systems, Medicaid payment systems, for example, can be of broader use, but these systems may not readily be converted to a useful form.
I think there needs to be more discussion in the report of making better use of existing administrative data systems such as Medicaid. With limited resources, the establishment of new large-scale data collection systems will be difficult. Improving the use of existing data systems should become a priority.
An issue in this regard is the expansion of HMOs and capitated payment systems. It is critical that these health care providers be required to submit detailed encounter data for services not paid on a fee for service basis. Otherwise, there will be large gaps in paid claims databases and important data systems such as Medicaid will become less useful over time.
There is a discussion in the vision report of data linkage, and certainly data linkage is a very important means of increasing the usefulness of health data. The report states that quote, linkages of individual record data must occur within a newly established legal framework with appropriate human subject review board approval or permission from data subjects.
This statement seems misguided to me. Implementation of such regulations regarding data linkage would result in important data linkage activities grinding to a halt in many settings. Many state health statistics staff already have access to confidential data files. Protections are in place, such as requiring staff to sign legal statements to protect individual privacy. Linking two confidential data files does not usually result in any new confidentiality problems if staff already have approval to access the individual data files to be linked. Adding legal or administrative hurdles to data linkage seems unnecessary, and would greatly impede data linkage activities in state government settings.
So those are my main comments. I would like to echo what Janis Curtis said about perhaps dividing up and prioritizing the division, so that there are certain things that are considered top priority and should be done first, and then maybe a second tier of things. As it is, it sounds great, but it is a bit overwhelming. I think to maybe come up with some priorities would be a good idea.
Those are my comments.
DR. LUMPKIN: If I could toss it back at you, and you may not necessarily want to do it right at this moment, but if one were to priortize the pieces of the division, what would be your priorities?
DR. BUESCHER: I don't know that I can respond just off the top of my head. I have to go back and review it, and maybe come up with some ideas for that.
DR. LUMPKIN: We would appreciate it if you could just e-mail it to us or send us a letter. That would be helpful.
DR. BUESCHER: To Rob, is that right? Because I have been communicating with him.
DR. LUMPKIN: Sure, and he can send it to us. Questions? Thank you both for the presentations. They have been very thought provoking.
I've got a couple of questions and comments. Chris, in your presentation, you seemed to place a lot of emphasis and analysis on county level data. Some of the challenges that I seem to be facing in Illinois is, what do you do in the inter-census years in trying to calculate rates?
Second is, when you start trying to look at rates particularly -- and I assume that you probably have the same problem here; we've got counties that go down to seven, eight, nine, ten thousand people. Looking at anything over a short period of time gets to be very hazardous in trying to make some estimations of what is going on.
DR. MANSFIELD: That is always an issue. Perhaps John Booker wants to respond to it. But I think when you have small numbers, you just simply have to go to a longer time period, or use statistical techniques such as a regression trend to look at it. Otherwise, I think you get led into areas you don't want to go into by small numbers.
DR. LUMPKIN: Let me -- unless Paul has a comment on that, or anything to add?
DR. BUESCHER: No.
DR. LUMPKIN: Let me take that a little bit further. In your analysis you were using trend lines. The assumption is that the trends would continue. Now, cardiovascular disease mortality is a combination of a number of factors. One is increasing technology and preventing deaths in those who develop cardiovascular disease. Another is preventing the cardiovascular disease from occurring at all. At some point, one has to expect that there is going to be a plateau effect. To what extent do we look at in setting those goals -- can we at some point, particularly as we look at various diseases, expect that we are going to run into a plateau effect, much as we have seen in the slowing of the rate of decreasing infant mortality deaths?
DR. MANSFIELD: I'm not a cardiologist, but --
DR. LUMPKIN: That's okay, the others aren't, either.
DR. MANSFIELD: But obviously, if -- I don't know why we would want to anticipate a plateau. I think if we have to project forward, we project forward based upon the best data that we have.
Maybe there are better techniques. Those are just simply the utilities that exist in Power Point, to plot those. But the time frame is important. One of the things that of course you hope for when you start looking at this is, for instance, was there an effect of having a new medical school in Eastern North Carolina, a new academic health center there. When we plotted the coronary heart disease first on five-year averages, we saw a very remarkable downtown that began occurring in 1985. That is when we brought cardiac surgery there. But when we plotted all the data points and put the trend line in, you don't see the effect. So you have to be careful, and I think always use more data rather than less.
DR. LUMPKIN: Paul, and then I'll get to Ed. I wanted to challenge your position on paper documents. I'm not sure -- and I am kind of stuck between agreeing and disagreeing. The reason is that it seems to me those that are going to be data users at the local level, and by and large, many of them are going to be not data users, but information users, data with analysis being information.
They don't generally go to the primary source. They want to know about the data or information related to their particular community. They are willing to ask somebody for that, whether it be the state health department, or go to the library.
At that particular instance, it seems to me that the system that we conceptualize ought to not develop a Vital Records Report Illinois, which is a big huge tome that I'm not sure very many people read, and certainly the people we are talking about in the community would have very little utility. But the ability to create hard copy that is particularly customized for the requester, and that maybe ought to be the role of the holders of the data to present in a means which is useful for those data users, rather than just saying that it has to be hard copy or an electronic means.
Also, those who would be looking for that, the normal sources that would go for this hard copy data, which would be the library, and most libraries in the nation have access to the Internet, so that would be certainly a means for them to get to it.
DR. BUESCHER: Well, I'm not proposing that we continue to produce large printed volumes with tons of data. For the health professional and the savvy individual, accessing on the Internet is no problem. It depends on who your audience is. If you are talking about local politicians or community health improvements or local coalitions or this type of thing, not all of those people have access to the Internet.
Perhaps the bulk of the data could be published in electronic form, but if it is NCHS or state government, maybe there needs to be some synopses or some fact sheets or some boiled-down version of the data that can be made available in printed form, even if it is in a PDF file on the Internet. Somebody at the library could print it.
I'm just saying that not everybody is going to always be able to go to the Internet, and there needs to be some consideration of those folks as far as data dissemination goes. Not that all the detailed tables need to be continued to be printed, but some synopsis.
For the people that are working in public health professionally, it may not be that necessary. I'm thinking more in terms of citizens and advocacy groups at the local level.
DR. SONDIK: Chris, I have several questions -- through the Agency for Health Care Research and Quality, through their HCUP program?
DR. MANSFIELD: No. I think Tom Ricketts can probably speak better to this. He has followed that and he had tried to catch up and plug the gap. But there was an interesting privatizing -- one thing that they could find to privatize, and I would have to say, if health care is not going to be seen as a public good, damn it, health data ought to be a public good.
DR. SONDIK: I'm surprised.
DR. RICKETTS: The state requires the reporting, and the reporting goes to a qualified data vendor. The data vendor then makes the data available to the state center for health statistics or health informatics, and the Shep Center does the quality control for the Division of Facilities Services, which actually regulates this.
We just started an agreement with the HCUP people to flow the data to that system now. It took a while for that agency, as I call them to day, would you like our state data, we have received approval from the private vendors and the hospital association, which politically controls this, they said, no, you don't have a state database system.
Well, we have a continuous hospital discharge database system since 1989. It is just that it is hard sometimes to get people to believe we do. But the data are available if you purchase them from HCIC SACS for a private user, for a nice little chunk of change. But they will flow into the HCUP on a restricted basis next year.
DR. SONDIK: They will?
DR. RICKETTS: Yes, they will.
DR. SONDIK: In which case, they can be retrieved by the state.
DR. RICKETTS: Well, the state gets them. We do analyses. They can be retrieved by a community. We respond to communities who request it with permission of the Division of Facilities Services, that provides it for a research purpose. So there is some availability, but we are creeping along as the private owners of this don't want to see their market abused or trampled on. If we tend to be a loss leader for them, they are happy.
DR. BUESCHER: We may be in a little bit of a special position, in that the center gets the data through a legislative provision, but it is probably not as available to others as it used to be. But I will have to say that under the new system, the data that we have gotten from HCIA has been of higher quality, there has been more variables available to us, and the data has been much more timely than it was under the old system.
So as far as public health goes, I think we are better off now. That leaves maybe some other people out, but we have been fairly pleased with the change from the standpoint of the data we have been getting.
DR. SONDIK: So you say it is value added?
DR. BUESCHER: I think so.
DR. SONDIK: Mary Jo decided to leave again, so she can't answer the question about Healthy People. But I would think that if you calculated instead of years of life lost, you calculated longevity, you would see different numbers, but you would see the different kinds of relationships. That is a question.
In other words, basically the same numbers are going into calculating years of potential life lost, which you are cutting off at 75, but if you calculated longevity --
DR. MANSFIELD: Oh, you mean the survival curve.
DR. SONDIK: Yes.
DR. MANSFIELD: Those survival curves -- that one that you saw for North Carolina was done with the '89-91 data that CDC had. I don't think states routinely do those. And of course, it is difficult to do at the local level.
DR. SONDIK: Because of the denominators?
DR. MANSFIELD: Yes.
DR. SONDIK: The demographics.
DR. MANSFIELD: Right. But premature mortality is a very simply graphed concept, and it is all the deaths.
DR. SONDIK: Well, it still requires the demographics to do it.
DR. MANSFIELD: But to do survival curves, don't you need census data? And you can calculate premature mortality just off of vital records data, and you can do that on an annual basis. Once you get into the intercensal years, the population estimates particularly in the latter parts of the sevens, eights and nines, tend to be less and less reliable, particularly if you are trying to look at disparity, because the ratio makeups at least in our experience, our estimates have not been reliable in the latter years of the decade.
DR. BUESCHER: Can I comment on that? We have one of the census user's offshore sites here. Nationally, we are finding some -- the 2000 census as a census, the intercensal estimates may be more accurate in and around certain -- as we go forward in the 2000 census, because of lack of response and problems with applications of the census.
So don't sell your intercensal estimates short, and don't compare them directly to the enumeration, because the enumeration has a margin of error probably greater than the estimate error. Especially for small area statistics, the imputations that are done are almost always statistical, anyway.
DR. MANSFIELD: And I don't think you have to do it every year. To do it every year is to be tyrannized by the data or the technology. It is a gross population descriptor.
DR. LUMPKIN: But I think the point being on the survival versus the years of productive life lost is that you can make those calculations. You don't require censal data to do that. As a measurement, we ought to take a look at that as perhaps being more useful, and take that suggestion and look at it a little bit more.
DR. MANSFIELD: Either one are easy graphics.
DR. SONDIK: I do think to make sense of a time stream of YPLL measurements, then you need the demographics. But one point in time, you could certainly do it. But then when you start comparing populations for which the demographics are changing, you need some way of being able to compare the population at one point versus the population at another point.
I think that the reason that longevity was used rather than YPLL had to do with picking an age at which to calculate YPLL. In fact, John just said years of productive life lost. Some would say years of potential life lost. But it really is a value judgment as to whether or not you want to choose 75 as the right age, because clearly people can be productive between 75 and 80, 75 and 85 and so forth and so on.
I think there is a kind of a value judgment that comes in on that that it makes me nervous to make. Whereas, longevity is not something in which you are making a value judgment. I think it is important to use those kinds of measures in looking at the country as a whole or in looking at counties or whatever. But I think that was an issue.
DR. BUESCHER: Well, the quantification was just simply greater longevity and no disparity. There are no numbers applied to either.
DR. SONDIK: Well, we probably could talk about that offline as to how quantitative one wants to get, including setting goals and that sort of thing, quantitative goals overall, versus setting a more general goal of eliminating disparities.
Paul, I wanted to ask you if you could say a little bit more about your next to the last point, which had to do with the linkages of databases and confidentiality. What about in those situations or those states, for example, in which this is a difficulty at this point? Do you think that these guidelines or -- I'm not sure what the right word would be, other than guidelines, to allow one to in fact link databases but still preserve confidentiality would be an improvement in other states?
DR. BUESCHER: I guess maybe I am biased in North Carolina, that we have been linking Medicaid