Minutes of the November 20, 2000 NCVHS Joint Hearings of the Workgroup on National Health Information Infrastructure and the Workgroup on Health Statistics for the 21st Century

11/20/2000

National Committee on Vital and Health Statistics

Workgroup on National Health Information Infrastructure
and
the Workgroup on Health Statistics for the 21st Century

November 20, 2000
National Center for Health Statistics (New Facility)
Auditorium
4105 Hopson Road Research Triangle Park, North Carolina 27709
(919) 541-0171


Committee and Workgroups members:

  • Jeffrey Blair, M.B.A.
  • Daniel J. Friedman, Ph.D., Chair, Health Statistics for the 21st Century
  • Richard K. Harding, M.D.
  • John R. Lumpkin, M.D., M.P.H., Chair, National Health Information Infrastructure
  • Kepa Zubeldia, M.D.

Staff and liaisons:

  • Mary Jo Deering, Ph.D., OPHS, Lead Staff
  • Ed Hunter, NCHS
  • Debbie M. Jackson, NCHS
  • Delton Atkinson, NCHS
  • Ed Sondik, NCHS
  • Steve Steindel, Ph.D., CDC
  • Charles Sirk, NCHS
  • Patrice Upchurch, NCHS
  • Rob Weinzimer, NCHS

Others:

  • John Booker, MD, Center for Health Informatics and Statistics, North Carolina
  • Paul Buescher, Center for Health Informatics and Statistics, North Carolina
  • Heather Christie, Emreddy and Harris
  • Janis Curtis, Duke University Health System
  • Bill Kalsbeek, School of Public Health, North Carolina Central
  • David Kibbe, M.D., Canopy Systems
  • Marc Kolman, Person County Health Department, North Carolina
  • Chris Mansfield, Department of Family Medicine, East Carolina University
  • Tom Ricketts, Cecil G. Sheps Center for Health Services Research
  • Vaughn Upshaw, Department of Health Policy and Administration, University of North Carolina School of Public Health

EXECUTIVE SUMMARY

The Workgroup on National Health Information Infrastructure and the Workgroup on Health Statistics for the 21st Century held hearings on November 20, 2000 to identify essential steps in setting a vision for the nation in approaching our health information policy. The groups heard 9 presentations and talked with 3 panels.

Overview of the Interim Reports

Dr. Lumpkin described the National Committee?s mission to look at health-related information, data and data collection and how the committee engaged in a strategic planning process that illuminates this course taken with HIPAA and has begun to define an emerging direction and broad vision for health information. NHII is seen as the vision that enables the free exchange of information pertinent to each individual's health and the health of the nation. The goal of this meeting is to identify specific steps to follow.

Dr. Friedman stated that the 21st Century Vision for Health Statistics is a subset of the NHII: health data that can be generalized to a known population of individuals, events, organizations or institutions and utilized to design and evaluate programs and policies. Based on insights from commissioned papers, discussion groups, and a National Academy workshop, the groups developed their interim report. The purpose of this third regional hearing was to gain further understanding around principles delineated in the report: principle number four--that information must be available at a sufficiently-detailed level to be relevant to real decisions; and principle number seven--that health statistics data must be provided back to communities, community groups, local governments in ways that maximize data access and easy usability.

PANEL 1

  • Tom Ricketts, Cecil G. Sheps Center for Health Services Research
  • David Kibbe, M.D., Canopy Systems
  • Janis Curtis, Duke University Health System

Dr. Ricketts said the vision is realizable, but its development (and expectations of the public and politicians) must be managed to match the reality of technology and the system?s capacity. The biggest challenge was data merging and creating standards for existing databases. He cited a need to provide vision for the public sector and urged an understanding that a market must be developed, not just a vision.

Dr. Kibbe discussed his experiences bringing Internet-based software to clients in rural areas, special requirements of rural health care and the Internet, specific actions the federal government can take to assure NHII extends to rural America, detail of data needed, and how to achieve feedback to the community. He recommended the federal government, in concert with states and other agencies, find ways to support care coordination programs that bring together rural providers to improve care coordination and health status of particular patient groups.

Ms. Curtis said a problem inherent in this vision that begins with capturing data at the point of care is that those responsible for capturing Internet data are not always trained, but are a linchpin to quality data. Training, she emphasized, is a significant aspect of implementation. She cited a need to be cognizant of the burden implementation could put on the smaller provider. Ms. Curtis reaffirmed she supported the vision, but noted it was overwhelming and emphasized it had to be segmented into manageable pieces. She encouraged the committee to: fund proof of concept and pilot demonstration projects, continue to promote and develop policies necessary to support the technical solution, and make sure funding invested long-term target is in ventures proven to work.

PANEL 2

  • Chris Mansfield, Department of Family Medicine, East Carolina University
  • Paul Buescher, Center for Health Informatics and Statistics

Dr. Mansfield addressed vision issues and challenges from a conceptual, practical and technical point of view, beginning with Healthy People 2010. He encouraged the groups to think about how they can help communities address the two most important goals of Healthy People 2010: life span and disparity. He mentioned collaboration with other departments of HHS on Healthy People 2010, and the need to provide an information infrastructure that will help at the local level. Dr. Mansfield also recommended focusing on interagency relationships. He noted the vision does not yet include all branches of the government.

Commenting from a state government perspective, Dr. Buescher said the challenge is providing the resources, commitment and political will to carry out this vision in the next decade. He called for discussion on resources and the statistical instability of small numbers. He supported the report?s view that data must be returned to communities, local governments and health care providers for local decision-making. He recommended the groups explore ways to utilize existing administrative data systems, e.g., Medicaid. Dr. Buescher noted that data linkage is an important means of increasing the usefulness of health data and argued important activities would grind to a halt under regulations suggested in the report.

JOINT PANEL on NHII and Health Statistics for the 21st Century

  • Marc Kolman, Person County Health Department, North Carolina
  • John Booker, MD, State Center for Health Informatics and Statistics, North Carolina
  • Vaughn Upshaw, Department of Health Policy and Administration, University of North Carolina School of Public Health

Mr. Kolman said Person County has little technical interface with other pieces of the health care system and that there is minimal automation in local public health. Until there is some real application, he does not believe training or information sharing would be of much value. Questions often come up about smaller municipalities or the county seat and about environmental determinants. He said having real-time access to this data and the skills to interpret would be useful.

Noting the proprietary nature of data, Dr. Booker observed technology is not what separates us. He urged NCHS to continue to support the development of state-level health data and health statistics and encouraged development of a research identifier. He emphasized the need to: continue to prove what is possible out of health data sets, establish value, and do a better job of addressing policy and practice questions. He cited the importance of moving beyond race and ethnicity as proxies for what affects people's health at the community level. Dr. Booker said he would choose ingenuity over development of data systems and spoke of the need to continue to build and support local and state capacity and allow people to find ways to address public health questions with existing systems.

Dr. Upshaw said guidance in analysis and interpretation is needed at the local level. Noting the majority of local public health agencies? staff has no background in public health, he encouraged basic training. He emphasized the importance of localities thinking outside of traditional geopolitical boundaries and cited the need for a way to link financial and health statistics. He said Web-based systems will be a critically important next step and recommended achieving goals through mechanisms already in place. Noting many programs require data by federal and state governments, he recommended meeting needs within the emerging system, rather than building parallel silos.

Public Testimony

  • Bill Kalsbeek, University of North Carolina, School of Public Health

Dr. Kalsbeek encouraged the Work Groups to consider two initiatives. He recommended establishing a separate broadly focused, semi-independent health information planning board to provide overall focus, direction and coordination to the national health data system. The board's main function would be to orchestrate and broker production and dissemination of population-based health statistics. He also proposed the creation of a comprehensive national longitudinal health study to better understand the behavioral, treatment and policy effects on whole life health outcomes.


DETAILED HEARING SUMMARY

November 20, 2000

Overview of Interim Reports

Dr. Lumpkin convened this hearing of a joint Work Group of NCVHS, the Work Group on National Health Information Infrastructure and the Work Group on Health Statistics for the 21st Century. He described the National Committee?s mission to look at health-related information, data and data collection and how, with passage of HIPAA, this focused on health data-related standards: patient medical record information, standard transactions, and electronic data interchange.

Over the last year, the committee engaged in a strategic planning process of the executive subcommittee, confirmed in the full committee?s last meeting, that illuminates this course taken with HIPAA and begins to define an emerging direction and broad vision for health information. As the interim reports state, NHII is conceptualized as being the vision that enables the free exchange of information pertinent to each individual's health and the health of the entire nation.

Based on hearings conducted in Chapel Hill, San Francisco, and this January in Washington, D.C., the groups continue to define this vision and supporting standards. The purpose of this meeting is to identify specific, essential steps to follow. At a joint meeting in December, the groups will discuss how to integrate these insights into the development of the final documents.

Dr. Friedman stated that the 21st Century vision for health statistics is a subset of the NHII: health data that can be generalized to a known population of individuals, events, organizations or institutions, and utilized to design and evaluate programs and policies. This vision for health statistics includes: (1) a broad integrative definition of health (the population's health, the health care system, and interactions between them, as well as non-health care, non-medical determinants of health); (2) a definition of elements, resources, and organizations to implement the vision; (3) a set of criteria for evaluating health statistics systems.

A series of commissioned papers, local and national discussion groups, and a National Academy workshop assessed the current situation. Based on these insights, the groups developed the interim report. Comments from regional hearings have been consistent: validating the emerging principles, and pointing to a need for greater specificity about how we get from ?here to there.?

The purpose of this third of four regional hearings, Dr. Friedman said, was to gain further understanding. He said the groups looked forward to the participants? insights into a ?roadmap? and, specifically, around two principles delineated in the interim report: principle number four--that information must be available at a sufficiently detailed level to be relevant to real decisions; and principle number seven?that health statistics data must be provided back to communities, community groups, local governments in ways that maximize data access and easy usability.

PANEL 1

  • Tom Ricketts, Cecil G. Sheps Center for Health Services Research

Dr. Ricketts, Deputy Director, Sheps Center, and chair, Committee on Health Information Policy, described working an a companion effort early in the '90s as North Carolina moved toward comprehensive health reform. The visions were similar, he said, with vignettes like those in the report offering free, easy, appropriate access to health information for personal and clinical decision-making and development of policy at the local and national level. He noted a key to developing a national and state program for health care coverage is coordination of health data at the community level across the state to understand costs, needs, and ?where we need to go.?

The vision is realizable, but its development must be managed as much as technology. He said expectations of the public and politicians also must be managed to match the reality of technology and the system?s capacity. Technical issues were confronted that this committee now wrestles. They left more disappointed than satisfied people, even with progress developing underlying infrastructure.

Their biggest challenge was data merging and creating standards for existing databases. They learned the value in data and about economic opportunities for the private sector. He noted that, although the report cites health data as a private resource as well as a public good, little is said about how to manage this dichotomy: e.g., for issues of confidentiality. Entrepreneurs will take responsibility managing and marketing private-resource aspects of health data, but responsibility is unclear for ownership, dissemination and use of public-interest aspects of health data.

Dr. Ricketts noted that NCHS set standards and took on responsibility, but observed, as one moves down the levels of government and aggregation of population, there is responsibility for the coordination of standards and the use of data in the public interest. Many states have data coordination committees and cooperate with CDC and other DHHS components, but other interests are charged with coordinating data. Interagency conflict flared in North Carolina over who controlled technology, while the private sector moved ahead and marketed it.

Problems with public coordination were most difficult at the personal health level. Dr. Ricketts noted a personal data system was part of the interim vision, but emphasized conflict continues over ownership of these data and how they will be used for public purposes. He cited a need to provide the vision for the public sector; those responsible for the public sector (county commissioners, state legislators and health directors) need a sense of how they might use this data.

Dr. Ricketts observed that data mining is licensed the way we handle mineral rights. ?You can feel a sense of ownership,? he cautioned, ? but it can be lost to an entity that owns what is beneath the surface of our personal lives.? He emphasized that these conflicts and opposing forces need to be addressed and given a forum for developing some sense of turf or formal division.

Noting it often was unclear who the client was for any community measure, he expressed the need for a sense of the context and use of community health markers. The Work Groups? and prior visions placed great emphasis on the utility of health data, but Dr. Ricketts noted little effort has been made in developing the market for any kind of public sense community indicators.

Dr. Ricketts remarked on how much time it takes to work out technology, and reiterated that it also takes time to work out expectations. He encouraged the committee to pay as much attention to the contents and experience of visioning as they do to the technology that will make that vision come true. He urged the groups to understand that they must develop a market, not just a vision.

  • David Kibbe, M.D., Canopy Systems

Dr. Kibbe, a family physician and founder/CEO of Canopy Systems, discussed his experiences bringing Internet-based software to clients in rural areas, special requirements of rural health care and the Internet, specific actions the federal government could take to assure NHII extends to rural America, detail of data needed in rural systems, and how to achieve feedback to the community.

Canopy, an applications service provider wholly owned by physician policyholders in North Carolina, designs and hosts Web-based software systems for case management utilization and disease management. Case managers use Canopy to manage and coordinate the care of patients with chronic or destabilizing diseases and securely share clinical information with caregivers in sites throughout the community: physicians' offices, nursing homes, home health agencies and (hopefully, soon), health departments.

Rural populations have health and health care delivery problems the Internet can address. A low cost vehicle for the distribution of information and information management services, the Internet can assist providers and their patients make better decisions about their health, coordinate care among diverse and geographically separated sites, help avoid errors due to fragmentation, and help everyone understand why individuals and groups use particular resources and avoid others.

In 1998, Access Care, a 125-physician IPA in 25 medical practices, some in very rural North Carolina, asked Canopy to design and build a Web-based information system that manages information on over 85,000 children who are Medicaid beneficiaries. Care managers study, record and report experiences of patients who visit the emergency room or are hospitalized. Accessed by modem and browser, the system checks patient availability status, previous admissions, medications and other clinical elements. Collected in a single database, this information is used to generate reports studied by access care managers, physicians and nurses, to: (1) understand trends and utilization, (2) compare rates of hospitalization for specific illnesses, and (3) test the impact of patient education and extended facility hours on lowering unnecessary ER visits. An asthma disease management component of this system links reminders and evidence-based guidelines with asthma management and educational tools. Dr. Kibbe noted the system helped Access Care and the state Medicaid program save several million dollars over a two-year period through care management. Case managers reported timely access to patient information made a difference in the lives of patients and families served.

A second generation Web-based product supports a continuum-based case management project for the elderly frail. 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. The system links nursing home personnel, hospital nurses and physicians with medical records of over 100 nursing home patients.

Dr. Kibbe said Canopy and its clients encounter few complications and barriers delivering Web-based information systems in rural areas. They have usually been able to negotiate the intricacies of third-party digital certificate authorities with minimal difficulty; training providers has been less time consuming than anticipated, due to familiarity with the Web-browser interface.

One barrier is the quality of telephone lines in some rural areas. Problems sometimes occur with small local Internet service providers who do not always have the capacity needed to support rapid growth in their customer bases. A lack of understanding about security on the Internet can pose problems. Every contract to put Canopy?s software into operation goes through a lawyer's office and the range of opinions expressed about using the Internet for health care information is broad. Dr. Kibbe said they have been able to overcome most problems, although some programs have been delayed months by a legal firm?s lack of understanding.

He recommended the federal government, in concert with state governments and other agencies, find ways to support care coordination programs that bring together rural providers, (hospitals, physician offices, health departments and long-term care facilities) to improve the health status of particular groups of patients (elderly, specific common diagnoses such as diabetes or congestive heart failure, disadvantaged with regard to economic or social standing). Dr. Kibbe envisioned that care coordination around definite population of patients will provide the glue to hold provider organizations together.

Best practices and collaborative efforts that show promise should be showcased and their leaders made available. Dr. Kibbe contended that, given the opportunity, coordinated care programmers and their planners will by, themselves, invent the rural health information infrastructure and find Internet-based solutions on their own. Rural health care providers need seed money and models for planning that includes how to create win-win situations.

Dr. Kibbe recommended the federal government encourage grants and focused studies in rural areas that examine best practices for Internet security and privacy, e.g., public key encryption infrastructure and HIPAA implementation in rural areas.

He encouraged the federal government to support informatics educational grants for rural health care professionals and volunteered Canopy?s involvement. He also recommended developing demonstration projects using the Internet for rural provider networks that show sustainable promise of delivering value in the day-to-day world.

  • Janis Curtis, Duke University Health System

Ms. Curtis, Senior Associate Chief Information Officer, Duke University Health System, chaired the health planning committee Dr. Ricketts discussed--and so, she explained, she understood and supported the need for a vision. She is responsible for budget preparation, HR responsibilities and strategic planning at DUHS.

Duke University Medical Center purchased community hospitals in Durham and Raleigh and 14 primary care group practices several years ago as part of its integrated delivery system strategy. Ubiquitous connectivity and systems and applications that interfaced appropriately and seamlessly, Duke believed, would get them where they wanted to be. Ms. Curtis reiterated that a vision is good, but emphasized being knowledgeable about the challenges you have to confront.

Noting the cost categories identified in the report, she remarked that departments from Duke Hospital generally underestimate operating expenses associated with supporting a system once implemented. She advised allowing an additional 20 percent per year for ongoing operating costs.

Ms. Curtis said a problem inherent in this vision that begins with capturing data at the point of care is that those responsible for capturing Internet data are not always trained, but remain a linchpin to having good quality accurate data. Training, she emphasized, is a significant aspect of implementing this vision. People not only have to feel comfortable using a computer, they also need to know they have a responsibility to share information and allow access to that information. Training is not just about how to use technology; its educating people about their responsibilities.

Ms. Curtis told how Duke purchased Raleigh Community Hospital, a single system vendor that it is turning into a multi-system, multi-vendor environment. They are understandably overwhelmed, she said and pointed out a need to be cognizant in implementing this vision, recognizing the challenges it can put on the smaller provider.

She encouraged the committee to acknowledge the funds that will be required for institutions to adapt internal systems to provide data. Some providers will require additional support to convert manual data into an electronic format.

Ms. Curtis reaffirmed that she completely supported the vision, but added that it was overwhelming. She emphasized the importance in going forward of segmenting the vision into manageable pieces. And she agreed that expectations also have to be managed.

Another important thing, she noted, was to recognize priorities and ensure the dollars are appropriately channeled. She recalled one of the report?s scenarios was about Palm Pilots and PCs, all in sync. While a great vision, she reflected that, if she had a limited ?pot of money,? she would opt to make sure everybody could convert the minimum level of information from the menu or a hard copy format into an electronic one.

The bottom line, she said, is providers want to provide care. The more they have to learn, the more they are distanced from what they are supposed to do and are interested in doing. She encouraged the committee to: fund proof of concept and pilot demonstration projects, continue to promote and develop policies necessary to support the technical solution, and make sure that money invested long-term is in ventures proven to work.

Discussion

Dr. Kibbe commented that the utilization, disease and case management done in most health care organizations by a combination of paperwork and electronic systems is problematic in terms of HIPAA's security and privacy components. Information is taken off a computer without any audit trail and passed around on paper in public--activities which, ?by definition,? are insecure. He stated the need to envision a redesign for management that involves working entirely within an ASP software application. Ms. Curtis said Duke is in transition and moving away from paper takes time. At Duke, data is drawn from other department processes into an accommodator repository. The electronic record of a doctor?s dictation is automatically imported into the repository. Physicians can look online at dictated reports, key clinical information relative to lab, radiology images, etc. She said Duke plans to allocate resources for development, so documents will be electronic from conception and always in the repository. Dr. Ricketts concurred that standard operating procedure is to duplicate data entry, at least for the clinical decision-making. There is an experimental and high cost implementation period. He said results of comparisons need to be distributed rapidly and broadly to avoid duplicative cost. Dr. Lumpkin observed this is standard procedure, even if you're moving between paperless systems. The new system has to prove it is actually working before you stop double-data entries. He noted that federal, state or accreditation organization requirements mandating paper are a barrier. After the federal legislation on digital signatures, the environment needs to move on. He said a recommendation from the committee could prompt organizations to use alternative ways of meeting certification.

Commenting on the virtual private network the American Hospital Association offers health care providers to overcome limitations of current Internet technologies, Dr. Ricketts said he expected more of this as systems find they can improve connectivity within their controlled environment, control throughput, training up, and standards. He considered this a complementary direction, so long as standards remain common, but cautioned they are diverging. He cited more imaginative adaptations of LINUX operating systems, the JAVA alternative, and user processes that have difficulty with inter-operation on an Internet standard. Dr. Kibbe viewed AHA?s decision as recognizing that they had to ?get in the mix? with their member hospitals and find ways for creating local Internet solutions for community-based systems. He observed the tendency for people in health care to not really want to share information. In every community Canopy worked in, providers saw their information in proprietary terms. And as they thought about who might share or see it, they worried. Ms. Curtis said she viewed virtual private networks as an option worth exploring. VPNs are a cost effective alternative, but she noted any option had to be considered relative to security and privacy.

Dr. Kibbe said language divergences (e.g., JAVA and HTML) are minor glitches. Momentum is developing for using the Internet as a mechanism, not just for displaying information, but transferring tools for managing information into various locales. He noted he had visited some 60 200-to-400 bed hospitals last year and every one acknowledged their internal information systems were ?a total mess.? There is a feeling of being overwhelmed. They are looking for opportunities to outsource. He considered outsourcing a double-edged sword, particularly in health care.

Dr. Ricketts remarked that many people told to purchase or support systems are moving into ?unknown lands? and need a sense of what happens and where they might go. Many need to learn about privacy problems, the use of medical records and flow. Others need best cases to see how decision processes work when data is available. ?We are presenting an ideal vision and doomsayers hold out disaster scenarios that ?ruin peoples' privacy.? He focused on existing ?in-betweens? as best cases. Noting the real benefit from managing information better is managing patient care better; Dr. Kibbe encouraged a patient-centric focus. He recommended case examples of how managing information better helps the patient and also providers, hospitals, and the community. It takes a community, he said, to manage children with chronic illnesses and elderly people who need resources to die in dignity. He recommended models where information systems not only improve the outcomes of patients, but collect data that goes back to physicians and hospitals, merging with claims data and cost data, and is presented to community leaders in ways that get them to buy into the vision. He stressed the need to identify projects meaningful to various constituencies, and then go about the business of convincing them that this works.

Ms. Curtis agreed that demonstration projects were essential, but said it is also important to communicate that there is no one solution. Models need to be presented so people understand that they were customized to meet a specific community's needs and that each of us has this ability to adapt the solutions applied in our own environment.

Dr. Kibbe recommended working ?from both ends? to build support for NHII. He encouraged the federal government to articulate this vision and why it is in the public interest and the best interest of public health. He emphasized that health care is delivered locally; implementation involves strong support and active participation at the local level. It cannot be mandated, but it must be encouraged and supported.

PANEL 2

  • Chris Mansfield, Department of Family Medicine, East Carolina University

Dr. Mansfield, associate professor and director of Health Services Research and Development (HSRD) at this regional university charged with improving the population's health, addressed vision issues and challenges from a conceptual, practical and technical point of view, beginning with Healthy People 2010.

Over a century vast improvement are seen in the survival curves. Looked at by race however, the picture is different. In 1997, Blacks caught up to where Whites were in 1950. The challenge, Dr. Mansfield said is getting those survival curves squared up against each other.

Noting North Carolina?s lack of historic data, Dr. Mansfield said they ?can take a snapshot, but can't provide a moving picture.? Another challenge is to be able to see longitudinally and project into the future. Dr. Mansfield pointed out a need to evaluate whether existing systems at the state level can parallel the Healthy People 2010.

One metric lacking, he noted, is measuring life span in terms of premature mortality. Survival curves have value but are predominantly a snapshot, and not particularly useful ?where we work? at the community level. Observing that GAO decided premature mortality was the best single measure of a community's health status, he said communities need a benchmark in terms of life span. Premature mortality is something you can show county commissioners and area legislators; it is a useful way for communities to begin to see how they are relative to each other.

HSRD looked at years of potential life loss before age 75 and projected it. Displaying a graphic of 3,080 counties, Dr. Mansfield showed a geography to premature mortality. North Carolina ranks 40th. The analysis was produced from area resource file data. He emphasized the importance of making this data available and accessible in easy formats. Area resource files on a CD-ROM are useful.

He noted the objective of reducing coronary heart disease to 166 per 100,000 population and asked was that too great a challenge, given that half the counties would need to reduce 20 percent or more. It was doable, he said-- exactly what did happen in the state over the last 20 years. That insight came from data taken off SASS spreadsheets, manipulated and tracked for disparities.

He encouraged the groups to think about how they can help communities benchmark themselves on the two most important goals of Healthy People 2010: life span and disparity.

Dr. Mansfield said one thing lacking is a projection of where we will be in 2010. He displayed a linear regression trend and extrapolation for coronary heart disease showing that, except for non-white men, ?we will meet it if we don't do anything but what we have been doing.? Because of a lack of clarity, he said some sights might have been set too high. Benchmarks need to be revised.

Do we have the data to realize the best possible survival curves for all population groups? Dr. Mansfield said that is the challenge he was presenting. Not just mortality, but also morbidity and disability data are needed to determine quality of life. The mortality data is available. Funeral home directors send the certificates to the health department, who sends them to CHIS. David Kindig believes we can purchase population health if we can first measure it. Dr. Mansfield encouraged the groups to consider how to pursue the measures of disability and morbidity.

He addressed collaboration with other departments of HHS on Healthy People 2010, and providing an information infrastructure that will help at the local level.

Dr. Mansfield mentioned the issue of measuring the availability of community health services and their use. Ever since the privatization of the hospital discharge data in North Carolina, it has become increasingly difficult to get data.

He noted it is also still difficult to gauge who does not have health insurance in a community, relying on the Census Bureau?s current population survey for extrapolation. Other ways to get a handle on a better measurement are needed for health care reform and the expansion of health insurance considerations.

In doing community health planning, he noted the opportunity to subsequently utilize community assets mapping as a way of linking people to services.

Noting that as we move toward defined contribution it is going to become more difficult to negotiate the health insurance system, Dr. Mansfield encouraged using the Internet to empower people. In Eastern North Carolina not everyone has access to the Internet, but everybody knows somebody who does. He discussed online community resource directories, available to every physician, care manager, lay health advisors and faith-based group, so everybody can understand what options they have for insurance, at end of life, or for cancer treatment in any community.

One thing lacking in the vision is data on disaster. He described the immediate data gap during last year?s flood in Eastern North Carolina. FEMA and the American Red Cross did not know the local health care system or who to communicate with. He urged the groups to consider preparations for health disasters and following up once they occurred. It has been difficult to track chronic disease that may have occurred as a result of the flood, partly because of confidentiality issues with American Red Cross and FEMA.

Dr. Mansfield also recommended focusing on interagency relationships. He noted the vision does not yet include all branches of the state government and emphasized a lot of state laboratories need to be included. He suggested that the population the military wants to maintain healthy for readiness purposes presents an opportunity to track longitudinally what happens in a person's lifetime. He said it could be important to understand what goes on in the military experience and how that carries through into civilian life.

  • Paul Buescher, State Center for Health Informatics and Statistics, North Carolina

Dr Buescher, a CHIS statistician who has worked in public health statistics for 20 years in North Carolina, commented from a state government perspective. The real challenge, he said, is providing the resources, commitment and political will to carry out this vision in the next decade.

He said the report correctly states that more geographic and demographic details of health data are needed, and recognizes the expense and technical difficulty in obtaining this data. Dr Buescher called for discussion in the report on two issues: resources and the statistical instability of small numbers. Who will pay for collecting data at finer levels of geography necessary for local needs assessment and action? He noted the expense of implementing data systems that can collect population data (e.g., surveys such as BRFSS) and questioned how useful this data will be, given that minimal numbers of events in a small geographic or demographic category may lead to unstable percentages and rates. He emphasized that local data users need more education on statistical issues related to small numbers.

He supported the report?s view that data be returned to communities, local governments and health care providers for decision-making, noting that providers who know data is used for policy or other decisions will improve the quality of the data, especially if decisions affect them.

Noting the report acknowledged some people lack equipment and skills to find information and use it to make informed health decisions, Dr Buescher mentioned the need for hard copy as well as the Internet. Information published only on the Internet excludes many local users.

He also noted the report recognized that data derived from systems established for non-statistical purposes (e.g., Medicaid payment systems) can be of broader use, and recommended the groups explore ways to utilize 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. Considering the expansion of HMOs and capitated payment systems, Dr Buescher said it is critical that health care providers be required to submit detailed encounter data for services not paid on a fee for service basis. Otherwise, large gaps will foul paid claims databases and important data systems (e.g., Medicaid) will become less useful.

Dr Buescher noted that data linkage is an important means of increasing the usefulness of health data, but disagreed with the report?s view that 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. He argued important data linkage activities would grind to a halt under such regulations. State health statistics staffs, which have signed legal statements to protect individual privacy, already have access to confidential data files. Linking confidential data files does not usually result in new confidentiality problems if staffs already have approval to access the individual data files. Adding legal or administrative hurdles would unnecessarily impede data linkage activities in state government settings.

Discussion

Dr. Mansfield commented that when making some estimations dealing with small numbers, there is a need for either a longer time frame or statistical techniques (e.g., a regression trend.) Asked if, in setting goals looking at various diseases, one had to expect a plateau effect at some point, Dr. Mansfield replied no, one could project forward based upon the best data available. He described how, when they first plotted coronary heart disease on five-year averages, they saw a remarkable downturn at the time cardiac surgery was initiated. But when they plotted all the data points and put in the trend line, they no longer saw the effect. He emphasized the need to be careful and always use more, rather than less, data.

Dr. Lumpkin challenged the value of paper documents. He observed there would be mostly information (data with analysis) users at the local level; people who generally do not go to primary sources, but seek information about their community at the state health department or library. He suggested that the system they were conceptualizing should present data in the most useful way for users and would create customized hard copy. He also noted that the library is the usual source for hard copy data and most libraries have access to the Internet. Dr. Buescher observed that not all local politicians, community health improvements, or local coalitions have access to the Internet. He suggested the bulk of the data might be published in electronic form, but some synopses or fact sheets could be made available to citizens and advocacy groups in printed form or in a PDF file on the Internet. Somebody at the library could print it.

Dr. Ricketts clarified that state-required reporting of hospital discharge data goes to a qualified data vendor who makes it available to the CHIS. Shep Center does quality control for the Division of Facilities Services. A private user can purchase data from HCIC SACS. They agreed to flow it into the HCUP on a restricted basis next year. Some availability for communities is possible through Shep Center, with permission of the Division of Facilities Services, which provides it for research purposes. The private owners do not want to see their market ?trampled on--If we are a loss leader for them, they are happy.? Dr. Buescher explained that CHIS gets the data through a legislative provision, but it probably is not as available to others as it used to be. He said data received under the new system is higher quality, more timely, with more variables available.

Dr. Sondik asked if different relationships would be seen if longevity was calculated instead of years of life lost. Dr. Mansfield explained that survival curves require census data; premature mortality can be calculated off of vital records data on an annual basis. In intercensal years, population estimates in the latter 1990s tend to be less reliable, particularly looking at disparity.

Dr. Buescher explained that in North Carolina they have linked Medicaid, WIC, and other data to vital statistics since the early 1980s. He said he was not trying to minimize confidentiality issues: they have written approval and agreements and MOUs with other agencies to access their data files with names for purposes of linking. But, he contended if a health professional has appropriate clearance to access two different data files, then linking them together does not create any new confidentiality issues. He did not see a need for institutional review board approval or written consent from patients every time you link those databases--something that would practically halt activity. Dr. Lumpkin noted there were no checks and balances on what state government asks for. He mentioned a lawsuit in Illinois with a newspaper seeking access to cancer registry data: three variables, which would jeopardize confidentiality. (An expert was given these elements in 50 cases and identified half of them.) He said some entity within state government should review these practices and determine whether the benefit is worth the potential risk, rather than leaving this an internal decision for each operating unit. Dr. Buescher clarified he was talking about administrative database linkage internal to state government--not a data release issue to someone outside of the state government.

Dr. Hunter observed there is something about a combined database that puts an individual at greater exposure in a privacy setting as opposed to confidentiality. He said the patient side of him, wants greater clarity. And that part of him that is the public health agency side wants greater clarity also. What he heard was not inconsistent with the desire for ground rules review. Dr. Buescher agreed and suggested the document or subsequent regulations need to be specific about types of data linkage that require IRB approval. Dr. Booker urged the committee to be balanced in its concern about use of these data. Dr. Lumpkin countered that the concept they were working towards with access to health information is based upon consent. Public agencies are the only ones accessing health information without consent. Cancer registries are accessed without consent. Communicable disease surveillance has to be done without consent. There is a long tradition of maintaining private health information in a confidential way. There is also the obligation to make sure that, as public expectations and technology change, they are consistent in their response to those changes and take all the steps that need to be taken.

Dr. Buescher noted public good is created through data linkage. In North Carolina, they evaluated public health programs and provided data to Medicaid on outcomes (e.g., infant mortality) that they would not have had without linking Medicaid data to the birth certificates.

Dr. Sondik discussed appropriate risk of disclosure as criteria when formulating public policy. He noted that in NCHS there must be a certain number of individuals in a cell before they release the data, but observed, given the wide variety of databases and the number of ways to ask for data from a public agency, sooner or later someone might be able to triangulate and identify individuals. He queried what are appropriate criteria for risk? Dr. Buescher said he needed to give that more thought: there had to be some balance; yet clamp down too much and one missed all the advantages of linkage.

Joint Panel on NHII and Health Statistics for the 21st Century

  • Marc Kolman, Person County Health Department (PCHD), North Carolina

Mr. Kolman is Director and Administrator of the Person County Health Department and chairs a committee working to develop a statewide automation system. PCHD, with a staff of about 60 and a three-million-dollar operating budget, serves a rural community on the fringe of the Research Triangle area.

Person County, a medium-sized county of about 35,000, does not have much technical interface with other components pieces of the health care system. The department has PCs and a network connected to a state mainframe via a T-1 line, but there is minimal automation in local public health. Mr. Kolman said the staff is still scared of ?touching a mouse.? Until they have some real application, he does believe that training (or information sharing) will be of much value.

People ask why the information in their two-year community health assessment is 4 or 5 years old. Mr. Kolman said real-time data access would be useful.

Questions often come up about smaller municipalities or the county seat. And questions are asked frequently about environmental determinants. Having real-time access to this data and the skills to interpret it are issues. Mr. Kolman said it is a challenge to figure out how to collate all that data and present it in a way the community can understand.

Some 86 public health departments covering 100 counties in North Carolina dump data online on a periodic basis into a statewide data system designed in the late 1970s. Ten proposals were received from private vendors proposing statewide solutions, but the development committee questioned whether any they could afford would meet statewide architectural requirements or manage implementation across different platforms and programs. Local and state public health departments and HHS are considering jointly developing a comprehensive automation system.

  • John Booker, MD, Center for Health Informatics and Statistics, North Carolina

Before becoming CHIS?s director, Dr. Booker spent 25 years in Alaska and the Southwest working with state government, public and native health, and tribal entities. He said he was drawn to North Carolina by the promise of the quality and capacity of its health statistics agency. The agency includes the vital records program as well as vital statistics registries for cancer and birth defects. It has a health services analysis unit that is the TA arm for the state Medicaid agency and does assessment analysis of Medicaid managed care throughout the state. North Carolina would like to have Alaska?s trauma register that tracks events from the first call through hospitalization and ultimate outcome. Dr. Booker said the purpose drives the opportunities to produce connections and systems that capture information of interest. ?When there is interest, we figure out a way.?

Dr. Booker suggested that the statistics document, which looks strong from the information technology side, has not sparked the user side in health statistics; some experiments in health care and provision of services may not immediately attract people who work with and use health statistics, reflections of the health sector?s fragmentation.

He said the report?s references to Canadian and European systems brought to mind political, economic and other barriers the nation faces due to the way our health care is (or is not) organized. Referring to the proprietary nature of data, he noted ?technology isn?t what separates us.?

He urged NCHS to continue to support the development of state-level health data and health statistics and encouraged development of a research identifier to serve as proxy to the patient's name and other personal data, insulating individuals captured in the health data sets.

Dr. Booker stated the importance of moving beyond race and ethnicity as proxies for what affects people's health at the community level. Often the terms are used as a surrogate for the community in which the person lives, works and is sick or healthy. He stressed the need to go beyond that in order to address public health issues and limitations that are coming with the new race and ethnicity coding in the census and other data sets.

He underscored suggestions of an incremental approach to things, but he emphasized that the vision needs to be operating continuously in the background, so that the increments add up in the right direction to the fullest extent possible.

Dr. Booker put Dr. Buescher?s discussion about linkage of data sets in a larger context. Given a choice between development of data systems and ingenuity of analytic staff, Dr. Booker said he would choose ingenuity. He emphasized the need to continue to prove what is possible out of health data sets, to establish value, and to do a better job of addressing policy and practice questions as they arise. He suggested Dr. Buescher?s point could be generalized to simply not overlooking the need to continue to build and support local and state capacity and to allow people to find ways to address public health questions with the systems we currently have.

  • Vaughn Upshaw, Department of Health Policy and Administration, University of North Carolina School of Public Health

Dr. Upshaw coordinates the Leadership Program in Public Health and is president of the National Association of Local Boards of Health. He commended the vision report?s strong support of a coherent framework. Dr. Upshaw emphasized the importance of localities thinking outside of traditional geopolitical boundaries. He pointed out the complexity of multiple geographic jurisdictions and how people might pull data relevant for them in considering a framework.

Dr. Upshaw highlighted the need for a way to link financial and health statistics. He emphasized the need to look simultaneously at both cost of doing business to affect population health and outcome data on what health status measures are. In this way, he said, mechanisms can be built for local policy makers and administrators to say, ?If we do this and commit these resources, here is a fair expectation of yield.?

Using Web-based systems is a critically important part of whatever is done next. Dr. Upshaw recommended a central clearinghouse where individuals, businesses, and providers can draw down from a Web-based data source.

Dr. Upshaw commented that much in the community component of the infrastructure report is already captured in Mobilizing for Action through Partnership and Planning (MAPP), a strategic health-planning tool being built by the National Association of County and City Health Officials working with groups under contract with CDC. He encouraged looking at existing products and building in recognition for what you are trying to achieve through mechanisms already in place.

He noted guidance in analysis and interpretation is needed at the local level. They know how to collect data; they do not know how to analyze and interpret that data well. A Web-based tool providing standardized formats and suggested reports could model how data can be analyzed and interpretively reported. Individuals at local agencies could draw their own data in and create against that model to move data where it could be considered for policy.

Dr. Upshaw concurred with the vision document's call for broad collaboration and support. NALBH emphasizes that business people, educators, retirees, county commissioners, and others outside the provider arena make big decisions about what is going to be done and not done in terms of funding, manpower, programs, etc.

Noting the infrastructure report states medical care systems need to be able to communicate, Dr. Upshaw emphasized this need extends to public health and health and human service systems. How the system recognizes determinants of health and draws in that data is important.

Measuring health at the local level and building an evidence base requires creativity about tools and approaches, small area analyses, running multiple year averages, etc. Localities need help figuring out how to make a strong evidence-based decision using the kind of data available. Dr. Upshaw stressed this will be critically important as the mantra for evidence-based decision making becomes more prevalent and county commissions, boards of health and others ask local programs for evidence that things work.

Convenience and consistency are essential on the local level where plates are already full. Adding more to collection without building it into existing programs and making them more convenient to use will not help.

Dr. Upshaw remarked on the increasing need at the local level to protect confidentiality and privacy as numbers become smaller and you cannot easily aggregate and make people anonymous.

Some 75-80 percent of local public health agencies? staff s have no background in public health. Biostatistics and epidemiology are not part of most peoples' training. Local public health people and others in the health care and health and human services arena need basic training (e.g., definitions of a ratio, an incidence, a prevalence). Simple statistical and epidemiological procedures that can be run and understood locally will help people begin to analyze and interpret.

Dr. Upshaw addressed the need for software systems and hardware that interface. He discussed working with counties where health data is in one system and financial data in another ?and never the twain shall meet.? He cautioned if the financial side continues to be left out, ?we will find ourselves in an upward spiral.?

Noting many programs require data by federal and state governments, Dr. Upshaw encouraged the Work Groups to consider how each can have its needs met within the emerging system, rather than building parallel silos.

He discussed the Community Health Status Indicators project, a Public Health Foundation and Health Resources and Services Administration collaboration, which makes county-by-county reports available online. Counties can pull up their own health data, compare it with 2010 objectives, national and state rates, and peer counties across the country. He emphasized the importance of comparative data.

Dr. Upshaw recommended a tool, not widely used by local health departments because of its cost, the American Hospital Association?s outcomes toolkit and Health Care Forum. With the Web-based software, secondary data can be drawn down from a central server. The hospital, local providers, the health department, et al., can enter data which anyone granted access can see and manipulate to generate reports. Suggesting such tools are models for how this process might evolve, Dr. Upshaw suggested it is partly a matter of willpower, of directing ourselves to say ?this is a reasonable way to make things available locally that everyone can access.?

He encouraged the groups to see this as an opportunity to work both from the bottom up and the top down. The infrastructure needs to build an evidence base at multiple levels, but he emphasized that it will only work when it works well locally.

Discussion

Dr. Booker clarified that complexity of the changes and the elaborations and coding of data collected by racial and ethnicity present huge challenges in using that data. He said capturing race on a birth or death certificate is, at best, a proxy for much that has or will happen in a person?s life. Overlooking issues of family income, education and all the social determinants of health shortchanges our ability to detect and deal with how those factors influence health outcomes.

Asked what could be done to bring his employees ?up to speed? on computer issues, Mr. Kolman replied that people are not going to adopt something unless it has practical application. Dr. Harding noted that in his hospital, pediatric residents have an electronic medical record and spend their lunches inputting it--That is what it means to them. Mr. Kolman responded that, even if his staff sees this vision and wants to get on the bandwagon, unless something makes their lives easier, it would be difficult. He said people acquire skills because they have the Internet at home.

Mr. Kolman explained 35,000 people reside in the county. The health department, with a staff of about 60, provides clinical services, though they are not a primary care provider. A home health and hospice agency has about a dozen employees. Environmental health (septic and well permitting, food and lodging) has a staff of 7, administrative is 4 people. Other departments include case management care coordination services for children and pregnant women, child health, maternity, family planning, breast and cervical cancer prevention, TB, communicable disease control, and WIC.

Dr. Booker observed there is a more immediate sense of benefit, purpose and attractiveness to patient records systems from the practice side. Such things do not track quickly over to the public health statistics side, though there are benefits in their potential connection. He observed that data systems will not solve some fundamental issues. Healthy Carolinians tries to provide data to local groups down and below the county level; he noted an inherent tension about how low they can go, how thin the numbers can get. Dr. Booker expected a lag before the public health side is in a position to take advantage of the development in patient care and the data being produced. Some dimensions in public health, he reflected, would never be part of those patient record systems.

Dr. Sondik recalled that Ford gave all its employees computers and noted there are plenty of slower computers around that could be harnessed for training. Dr. Kolman noted a geographical information system was being set up in his county. The primary application was for tax records, but ideally it would be used for health-related information. The county dealt a lot with STD's and teen pregnancy and they thought about using GIS; but the staff knew where the pockets were in the small county and decided the technology and training would be questionable. He thought that a GIS mapping system to mark incidents of cancer in the county might be useful.

Mr. Kolman said leading health issues were cerebral vascular, cardiovascular disease according to a community health assessment process the state provided. He said it made sense intuitively (based on economic status, racial background, a somewhat elderly population, sedentary, formerly agrarian community), but he was not convinced until statistics confirmed it.

Dr. Lumpkin noted that one issue addressed was availability of county specific data. Behavioral risk factor does not provide county specific data for Person County. If chronic diseases are the county?s number one problem, the vision should provide tools to determine the sedentary lifestyle and introduce and monitor a program to change that.

Mr. Kolman said he believed that people died from the causes indicated on the mortality statistics. He noted that in Person County and other small communities, they do not have resources to determine causes; there is no epidemiologist or anyone to do policy research.

Dr. Sondik observed that this vision called for more communication between health providers, including the schools. He asked if the physician community had a good sense of the problems. Mr. Kolman said that he did not know the physician community. The department was seen as a health services provider, not a public health authority--there was little communication.

Mr. Kolman said he believed third parties had better statistics than he did. Dr. Sondik said he sensed third parties used a looser standard of evidence, doing more on the basis of evidence and inference, then feeding back in a loop. He emphasized the importance of understanding how better statistics and information would be used by other sectors and intersecting more.

Dr. Harding observed that the health statistics vision is about better informing our intuition and inferences. He suggested much of Mr. Kolman?s intuition about his county came, not from health data, but from census data. He noted that inadequate communications across public and private are common, and encouraged tapping into what drives other?s intuition and inference, and adding that to what already drove yours.

Dr. Lumpkin cautioned that measurements are important. Physicians say they counsel patients on smoking 80 percent of the time, while the records indicate only 40 percent.

What Mr. Kolman would most like to know about his county is the truth on its cancer rate. The community is deeply concerned: Person County has the biggest contribution per capita to Relay for Life, an American Cancer Society fundraiser. He is seeking more detailed statistics and a way to present them to the community.

Environmental issues, viz., the impact of manufacturing and septic systems, are also concerns. Mr. Kolman?s priority is collecting more data rather than hiring somebody to do more analysis.

Dr. Deering noted that underlying NHII?s vision was an emerging concept of public health as a proactive link connecting with individuals and providers in the community. She asked if it ?hit? the participants that assumptions were being made about the way public health is viewed and viewed itself, that might not ring true.

Mr. Kolman agreed with the Work Groups? assessment on where public health could lie. Dr. Booker, who already had cited a need for a trauma registry, said he would like to have ?a handle? on how many people had been seen by physicians or other providers in Person County for diabetes, management of heart disease, etc. A significant next step would be access to the private and managed care organizations' patient care data. He noted Dr. Mansfield had ?made a good pitch? for years of potential life lost, but said he would like to know more about what happens along the way. He said they are continuing the effort in North Carolina to try through linkage to compile a longitudinal data set for children up to the time they enter school. Many health related events happen that do not result in death or hospitalizations, and there is an informational void.

Dr. Sondik expressed hope that the standardization realized through the HIPAA process would enable transaction information to be more useful to public health. He noted that the committees that work on standardization were focused on this important step.

Asked about the usefulness of data, Dr. Booker replied some data was used simply because it was all they had. Transaction data from HMOs, ?Blues? or HCFA could fill in the picture, since they already know a lot about Medicaid clients or CHP enrollees. He noted that in some states, state employee benefit plans help. He mentioned the issue of children moving in and out of Medicaid, CHP, and managed care and a long-term goal of utilizing this information to follow people over the life course and through events in their lives.

Dr. Upshaw observed that difficulties many local jurisdictions have analyzing data might best be addressed by designing information systems so people can learn while using analytical tools. Getting people ?up to the first rung of the ladder? and utilizing software similar to the Health Care Forum and the Outcomes Toolkit provides a way for individuals to enable themselves to analyze, interpret, and disseminate local information. Most local health departments do not have resources to hire biostatisticians and epidemiologists; health educators and nurses will do much of this. Software could help them get a basic analysis done. Dr. Upshaw proposed that foundations could provide pilot funds for developing these tools. As models developed, there would be incentives for states to put money into tools that will produce value for them.

Mr. Weinzimier suggested that NCHS or other federal agencies could work through schools to build a curriculum to help local health departments. NIH and CDC have SBIR grants that have funded potentially commercial innovative technology applications. Dr. Upshaw commented that universities could do more to communicate how health data can be used and appropriate ways of collecting and managing data locally. He remarked on the tendency in large, research universities to do the big studies. He noted there is no clear agenda for what needs to happen, and suggested this vision might shape one and kindle an interest. He emphasized there is still a fair gap between the health services research agenda which is well organized and financed through AHRQ and other organizations such as NIH, versus population-based data and population-based evidence research. He said we are still trying to figure out what the boundaries are, what kinds of things would be of interest, how to make that fundable and meaningful. The faculties are probably going to be receptive only when it is clear that there is money and a goal in mind. Dr. Bill Kalsbeek from the School of Public Health, UNC-Chapel Hill, noted that, despite constraints in doing big-time research with local data sets, there are interesting research issues in locally gathered data sets. He said there needs to be some systematic mechanism for a researcher who recognizes an important issue to use to select and study local data.

Dr. Sondik remarked in biomedical research one continues to learn and products continue to come out of it. He imagined that when this vision was realized, products would come out of this too. He said this was a major opportunity and role for the private sector as a partner and bridge between the research and the applications public health communities.

Public Testimony

  • Bill Kalsbeek, University of North Carolina, School of Public Health

Dr. Kalsbeek said in any context, whether dealing with a major national data system or a local study, public or private, one faces issues relevant to methodologists. What does (or does not happen) often boils down to resources, some mechanism whereby if something comes up in the process of collecting substantive information, one has the ability to systematically study these things. Dr. Kalsbeek said the center was trying to forge a partnership between people doing research in the substantive area and methods people, so in partnership they can learn to facilitate research and address important issues as they see them.

Dr. Kalsbeek encouraged the Work Groups to consider two initiatives that would help shape the future of the nation's data system and enable it to meet health outcomes information needs.

He recommended establishing a separate broadly focused, semi-independent health information planning board to provide overall focus, direction and coordination to the national health data system. This board would forge an ongoing partnership of health providers and insurers, as well as public and private users and producers of health data. Dr. Kalsbeek suggested the Australian Institute of Health and Welfare, and the Canadian Institute for Health Information as models. The board's main function would be to orchestrate and broker production and dissemination of population-based health statistics. Major functions might include: (1) identify and organize information needs at all levels of the health care system; (2) establish a working collective partnership with all producer agencies; (3) negotiate a clear set of information gathering roles; (4) develop and implement a long-term plan to promote a collection of standardized high quality health data; (5) develop and implement innovative new ways to gather needed health data; (6) promote the privacy and confidentiality of all publicly acquired data and explore ways to deal with accompanying threat; (7) support the development of new methods to effectively use collective data to answer important health related questions being asked by the health community; (8) promote access to health data by public and private researchers and policy makers; and (9) explore new outlets and uses for health information based on current information technology.

Dr. Kalsbeek also proposed the creation of a comprehensive national longitudinal health study to better understand the behavioral, treatment and policy effects on whole life health outcomes. Potential interrelationships cover the full span of a person's lifetime and cross the full spectrum of a health care system, e.g., considering the impact of exposure to second-hand smoke as a child on respiratory ailments in adulthood, the role of stress during middle age as a determinant of cardiovascular disease in later life, features of the health care system that affect the health outcomes of its recipients, the long term effects of medical treatments.

Dr. Lumpkin thanked everyone who participated. He indicated that the workgroups will be preparing their respective reports: with NHII aiming for completion in the spring, and the 21st Century Vision report targeting later in the year for completion.

The meeting was adjourned at 3:50 p.m.


I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.

/S/ 3/7/2001

_________________________________________________
John R. Lumpkin, M.D., M.P.H. Date
Chair, NHII Workgroup
/S/ 3/7/2001

_________________________________________________
Daniel J. Friedman, Ph.D. Date
Chair, Health Statistics for the 21st Century Workgroup