A Symposium At the National Academy of Sciences Celebrating The 50th Anniversary of the National Committee on Vital and Health Statistics 1949-1999
2101 Constitution Avenue, NW
|Shaping a Vision for Health Statistics by Gary Catlin, Statistics Canada|
|Written comments provided by Kerr White|
|Presentation by Dr. Detmer|
|Presentation by Dr. Lumpkin|
|Shaping a Vision for 21st Century Health Statistics by Dorothy P. Rice|
|NCVHS 50th Anniversary Symposium Reports (1.52 MB)|
|NCVHS 50 Year History|
The National Committee on Vital and Health Statistics (NCVHS), established in 1949, celebrated its 50th Anniversary on June 20, 2000 with a Symposium at the National Academy of Sciences (NAS). The attendees included current and former Committee members and staff, policy makers, other government officials, members of the scientific community, and representatives of professional associations.
The participants used the occasion to reflect on the Committees accomplishments over five decades; to review the current status of health, health care, and information in the U.S. and globally; and to consider future directions and priorities for the Committee. The Symposium discussions pointed firmly to the future by underscoring the need for timely action, with federal leadership and NCVHS guidance, to harness the unrealized potential of information to improve individual, community, and national health.
Health and Human Services Secretary Donna Shalala joined the Chair of the NAS Committee on National Statistics, the three most recent NCVHS chairs, and an HHS Data Council Co-Chair in offering congratulatory remarks. Each of these speakers recognized the National Committees past accomplishments but placed special emphasis on the important roles and contributions that lie ahead for NCVHS following this victory lap. NCVHS Chair John Lumpkin later observed with pleasure that his forward-looking predecessors seemed most interested in reminiscing about the future and what we need to do.
The main focus and catalyst for discussion was two NCVHS interim reports outlining facets of what former NCVHS Chair Don Detmer called an Information for Health Strategy. The two closely related vision documents, now under development by the Committee, are Toward a National Health Information Infrastructure and Shaping a Vision for 21st Century Health Statistics. (Both are published in this volume and also posted on the NCVHS Website.)
The reports were presented by the Chairs of the NCVHS Workgroups that developed them, followed by reactions from distinguished commentators. Rather than proposing any changes to the visions, the Reactors focused on the need to implement them as soon as possible, noting the challenges that can be expected in doing so. The presentations offered complementary perspectives on using the visions to bring knowledge to the point of service to improve the populations health. Many speakers endorsed Dr. Detmers suggestion that building the health dimension of the information superhighway would require a roadmap, a budget, and a designated driver.
The following report summarizes each of the presentations and then reviews the crosscutting themes in the Symposium. What emerged was a picture of a health environment that is challenged, both positively and negatively, by the information explosion, and that faces unresolved needs among which health disparities and the lack of comprehensive privacy protections are top priorities. The Symposium created momentum for action in this environment, based on the evolving information strategy.
John E. Rolph, Ph.D., Chair, NAS Committee on National Statistics
Dr. Rolph welcomed and congratulated the Committee on behalf of the National Academy of Sciences (NAS) and its Committee on National Statistics (CNSTAT). CNSTATs most recent health-related activity was convening a workshop on the future of health statistics (November 1999). The National Center for Health Statistics requested the workshop as a step in developing a vision for 21st century health statistics. The workshops findings, scheduled for release in August 2000, are consonant with those in the NCVHS interim report on the same topic. A general theme of the workshop was that at present, the U.S. health statistics system . . . cannot fully meet the nations current and anticipated health information needs.
John R. Lumpkin, M.D., M.P.H., Chair, NCVHS
Dr. Lumpkin noted the importance of the Nationals Committees partnership with CNSTAT and his hope that it would continue to grow. He commented on the momentous changes during the Committees 50 years of existence and the implications of those changes for the future. During that period, information and knowledge have become a transforming force in the world, facilitated by the technology of information and knowledge management. Dr. Lumpkin welcomed each of his predecessors to the podium, also encouraging participants to read the written reflections sent by former Chair Kerr White, M.D. (Chair 1975-1979).
Don E. Detmer, M.D., Dennis Gillis Professor of Health Management, Judge Institute of Management, Cambridge University (Chair 1996-1998)
After highlighting aspects of the Committees history, Dr. Detmer shifted the focus to the future, observing that it is probably better to invent part of the future than to inherit all of it. To this end, he proposed that the Committee and the Department find a way to link the two interim vision reports into a national Information for Health strategy, to bring the right information to all the right places at the right time. Realizing this vision will require partnerships among patients, communities, and national bodies including NCVHS, the Department, and the National Academy of Sciences. He also mentioned the need for monitoring systems using solid statistical analysis, as well as progress toward global standards. Many Symposium speakers later reiterated the importance of global connections and standards.
Dr. Detmer praised the two NCVHS reports and urged steady movement toward their implementation. He identified three essential conditions for this to take place: an Information for Health roadmap, a budget, and a designated driver. Dr. Detmer observed that the U.K., Canada, and Australia, among other countries, all have maps or plans, and the U.S. needs one, too. These countries also have far more government funding than the U.S. invests in its information infrastructure. He suggested that 7 billion dollars, spread over seven years, could move the U.S. infrastructure forward significantly. Regarding the need for a designated driver, he asserted that the U.S. needs an agency or a center . . . that leads the agenda and can channel the prevailing enormous good intention and tremendous energy.
Judith Miller Jones, Director, National Health Policy Forum (Chair 1991-1996)
Ms. Jones commented on the high caliber of people in the field of health statistics, where, like the children in Garrison Keillors Lake Wobegon, everyone is above average. She noted that todays Committee builds on 50 years of NCVHS achievements. Its work recently has been made more challenging by the Health Insurance Portability and Accountability Act, compounded by unresolved privacy concerns. Declaring that data and health statistics are the bedrock of good policy, she promised to redouble her efforts to improve information policy.
Ronald G. Blankenbaker, M.D., Associate Dean, University of Tennessee College of Medicine, Chattanooga (Chair 1986-1991)
Dr. Blankenbaker praised the National Committee for approaching its work in the spirit of the broad World Health Organization definition of health. This resonated with Kerr Whites written observation that the health world is starting to recognize the reality that the genesis of ill health and disease involves many factors other than germs and genes.
Dr. Blankenbaker noted the challenge of managing burgeoning data and information while also providing the kind of health care implied by the WHO definition. He joined his colleagues in congratulating NCVHS for its work, affirming that the Committee does make a difference.
Department of Health and Human Services Representatives
Hon. Donna Shalala, Secretary of Health and Human Services
In introducing Secretary Shalala, Dr. Lumpkin commented on her seven years of service as Secretary, longevity that is unusual for this position and that manifests important qualities of commitment and leadership. He reviewed her accomplishments, notably her support for upgrading the status of health information, statistics, and knowledge management within the Department.
After acknowledging the leadership of Dr. Lumpkin, the former NCVHS chairs, and NCHS Director Ed Sondik, Secretary Shalala congratulated the Committee on its golden anniversary and expressed pride in what NCVHS and the Department have accomplished together. She said of NCVHS members, I cant think of a group of people who have worked harder to promote a better and healthier life for the people of this country. The Committee is meeting her goals for it, namely building a broad-based national health information infrastructure and providing bridges to industry, the research and public health communities, and the American people. She noted that there is much left to be done to build a seamless web of information-gathering and dissemination that still protects the privacy of individual citizens. She promised to fight for more resources to accomplish these goals.
John Eisenberg, M.D., M.B.A., Co-Chair, Data Council
Dr. Lumpkin expressed appreciation for Dr. Eisenbergs advocacy for health information and data policy within the Department.
Dr. Eisenberg congratulated the Committee on behalf of himself and his co-Chair, Dr. Peggy Hamburg, joking that NCVHS now qualifies for AARP membership. He thanked the Committee for its hard work and valuable service, not just for the Department but for the entire nation, and he hailed the close relationship between the Committee and the Data Council and Department. NCVHS has provided a framework for bringing the benefits of information and technology to health and health care, in a way that protects the security and confidentiality of the information.
Dr. Eisenberg reviewed the Committees historic contributions to advances in health information policy, noting its proposal for the first national health survey, its advice on Health U.S., its leadership on health data standards, and its close collaboration with HHS to develop the regulations required by HIPAA. He praised the skill with which the Committee brings together policy and diplomacy to help people come to a consensus. In conclusion, he urged participants to look at a new World Health Organization report, released June 20, which reflects the need to measure both the health of the public and the performance of the health care system.
Moderator: Edward J. Sondik, Ph.D., Director, National Center for Health Statistics
Dr. Sondik began by extending his own thanks to the Committee, its Chairs, Executive Secretary Marjorie Greenberg, and her predecessor, Dr. Gail Fisher. On the theme of rapid technological progress, he noted the short lapse in time between the horse and buggy, figuratively and literally, and the deciphering of the genome, as well as the implications of the latter breakthrough for the health community. The Committee is very important, he said, in helping to guide and catalyze responses to the technology that increasingly drives the system.
With this he turned to the two featured reports, first introducing John Lumpkin, who chairs the Workgroup on the National Health Information Infrastructure (NHII).
Toward a National Health Information Infrastructure
John Lumpkin, M.D., Chair, NHII Workgroup
Dr. Lumpkin observed that the attainment of health is a shared responsibility. The process is driven by the use of data, which, when converted into information and knowledge, can lead to action to create better health outcomes. Information allows us to understand the links among the many factors that affect health. Although health care today is still approached much as it was 100 years ago, relying on the information in the individual physicians head, information technology offers the opportunity to transform health care. This change can be brought about by following through on the vision for the national health information infrastructure (NHII).
The Committee envisions the NHII not as a centralized database, but as a means of connecting distributed health information into a secure network, with strict confidentiality provisions. Making these connections involves a data model, data standards, and connectivity standards. The purpose of the infrastructure is to push knowledge to the point of service, making todays wealth of information available for clinicians, patients, and public health professionals to use in improving peoples health. These capabilities are expected to dramatically reduce medical errors and other adverse effects of care.
The NHII has three dimensions, representing the three categories of key stakeholders: personal health, health care provider, and community health. (Health statistics, the focus of the second vision report, is part of the community health dimension.) The information and knowledge within each of these dimensions is controlled by the designated stakeholder i.e., the individual, the provider, or public health workers. Dr. Lumpkin described the core data for each dimension and ways in which the dimensions and stakeholders will interact and exchange information in this dynamic system. For detail on the provider dimension, he referred the audience to the Report on Uniform Data Standards for Patient Medical Record Information (which NCVHS sent to the Secretary in September 2000).
He observed that the health care system now undergoing such transformation still must address basic issues of inequity and disparities. By providing decisional support and improving the quality of care, objective information systems can help the nation overcome treatment and outcome disparities.
Privacy is another special challenge, and he outlined the confidentiality protections that will operate within each dimension and in the transactions between them. For example, the community health dimension will use information in its least identifiable form, with controlled access on a need-to-know basis. Despite precautions such as these, he acknowledged that protecting privacy and confidentiality remains a major challenge, along with assuring equity of access and treatment quality.
The next steps in the development and promulgation of the NHII are to validate the vision, identify the barriers, and develop recommendations. Four hearings are scheduled around the country over the next six months. Then comes the hard part, when well be done with the talking and it will be time for the doing. Dr. Lumpkin stressed the urgency of moving to the action stage, in view of the proliferation of new health information systems whose multiplicity will make change more expensive the longer it is delayed.
Reactor: Edward Shortliffe, M.D., Ph.D., Chair, Medical Informatics, Columbia University; member, IOM National Research Council
Dr. Shortliffe had earlier that day presented to NCVHS members the National Research Council report, Networking Health: Prescriptions for the Internet. He called the NCVHS vision for a national health information infrastructure, as articulated in the NHII report, exactly right. He focused his Symposium remarks on a complementary subject, the background and potential role of the Internet, which he suggested is interwoven through much of what you envision for the future of the NHII and indeed is likely to potentiate it.
Dr. Shortliffes account of three decades of Internet development portrayed the medical world as slow to take advantage of this resource. As the infrastructure, standards, and consensus developed, parts of the medical world got involved but in general medical applications lagged far behind others. While consumers have embraced the health-related uses of the technology, the health care community just didnt get it. Noting that the prevailing culture in the biomedical and health world creates resistance to the use of information technology, he said what is needed is nothing less than a fundamental cultural change. Part of the problem is the fragmentation of the health care industry, which exceeds that of other industries; other factors are changing modes of practice and fear related to financial pressures. At this stage, the health care community should support focused information technology research as a component of biomedical research, to further such interests as protecting privacy and achieving large-scale system integration.
Finally, he pointed out that the national infrastructure on which the Internet depends would not have come into being without a substantial investment by the government. He stressed that government leadership remains essential to promote needed cultural change, help carry the costs of change, and bring the health world fully into the information age. Dr. Shortliffe agreed with Dr. Detmer about the three components needed to realize the NHII vision. All HHS agencies must be involved in this effort, and the National Committee is well positioned to help the government figure out its role. Now is the time to start the federal process, he said, even as the Committee continues to elicit comments from around the country to flesh out the vision.
Shaping a Vision for 21st Century Health Statistics
Daniel J. Friedman, Ph.D., Chair, Workgroup on 21st Century Health Statistics
Dr. Sondik acknowledged Dr. Friedmans leadership in crafting the vision for health statistics and moving that process forward.
Dr. Friedman said that the National Committee, NCHS, and the Data Council are collaborating on developing the health statistics vision in response to a 1998 request from Dr. Sondik. The vision encompasses population health, the health care system, and the interaction of the two at local, state, and national levels, using both public and private data. An important goal of the process, beyond developing the vision, is to define what is needed to implement itwhich is going to be the really difficult part. A related goal is to clarify the criteria for evaluating the health statistics system, today and in the future.
Developing the interim report and getting national feedback to its content represent the second of five phases planned for this process. The first phase was dedicated to learning from the past and the present through commissioned papers, consultative sessions in several communities around the U.S., forums at professional meetings, and the CNSTAT workshop described above. Finding a dearth of definitions of health statistics, the Workgroup developed its own, emphasizing the use of statistics in designing, implementing, monitoring, and evaluating health policy and health programs. Phases three through five of the processfurther national consultation, completion of the vision, and implementation are described below.
U.S. health statistics have been marked by unrealized potential, Dr. Friedman said, due to this nations failure to deal adequately with privacy and confidentiality issues, together with the existence of multiple unconnected data silos and the lack of a consistent conceptual and organizational structure. The result is a surfeit of data but a dearth of information, as well as multiple unanswered questions, at both macro and micro levels. One significant unanswered question, for instance, concerns the impact of health care on health.
From the vision development process thus far have emerged ten very rough-cut principles around which a detailed 21st century vision will be constructed. Dr. Friedman commented briefly on each of the principles, which are enumerated in the report. They include the need for privacy protection, flexibility to address emergent issues and needs, usefulness at different levels of aggregation and for different purposes, maximum access and ease of use, and policy relevance. Broad collaboration among private and public stakeholders will be needed to carry out this vision.
The next steps in the process are to receive further input through regional hearings and comments from the public via the project Website as well as at professional meetings, to map the current system against the conceptual framework, to delineate and address specific privacy and confidentiality concerns, and to produce a final vision report. The ultimate, and most important, phase follows the release of the report: using this vision for federal, state, and local population health information planning.
Reactor: Dorothy Rice, Sc.D., Professor Emeritus, Institute For Health and Aging, University of California, San Francisco
Dr. Rice, who directed NCHS from 1976 to 1982, delivered the keynote address at the November 1999 CNSTAT workshop on 21st century health statistics. Dr. Sondik acknowledged her significant public health contributions, in particular her analysis of the costs of smoking.
Dr. Rice characterized the interim report on health statistics as very, very important and the beginning of hopefully a very fruitful effort. After praising Dr. Sondik for stimulating the development of the vision, she highlighted what she regards as the most glaring gaps and cross-cutting issues addressed in the report. The most serious gap concerns health statistics on sub-population groups, including children and racial and ethnic minorities. Compounding this gap is the difficulty of obtaining data on socioeconomic differences. More longitudinal data are also needed We should start with children and follow them through their life and she called for pilot projects to move that idea forward. Our pluralistic healthcare delivery system creates special problems in data collection, analysis, and dissemination, with proliferating data systems and little sharing. The fragmentation of the system makes it imperative to integrate statistical systems, using uniform definitions.
On the federal side, Dr. Rice noted the many knowledge gaps that remain despite a broad array of surveys. For example, information on health insurance coverage is available only from a Labor Department report on unemployment. State and private data systems compound the fragmentation, and to these problems are added those caused by the irregular quality of data sources. She contrasted these with the more comprehensive California Health Interview Survey, one of several current models of collaborative data collection involving states, academics, and the federal government.
Above all, she stressed the need to invest in health statistics, as a demonstration of a judicious political commitment to quality health statistics in the public and private sectors. Returning to Dr. Detmers list of preconditions for the Information for Health strategy, she asserted that NCHS should be the designated driver. One of the next steps toward implementing this strategy, she said, should be an effort to make people more conscious of the importance of health statistics, thereby generating a constituency that would support a greater investment of resources.
Gary Catlin, Director, Health Statistics Division, Statistics Canada
Introducing Mr. Catlin, Dr. Sondik noted the importance of looking to other countries to learn how they have dealt with challenges like those the U.S. is now facing.
Mr. Catlin said Canada has confronted and is confronting the same issues as those outlined in the NCVHS health statistics report. A Canadian task force on health information in 1990 recommended creation of a health information coordinating council, citing concerns much like those identified by NCVHS. That very influential report led to formation of the Canadian Institute for Health Information (CIHI), an independent nonprofit organization that serves as Canadas designated driver for health statistics. In 1994, Canada started a longitudinal national population health survey and embarked on a series of cross-country consultations that resulted in the Health Information Roadmap (posted on the CIHI Website).
The 1999 Canadian federal budget allocated $95 million to Statistics Canada and CIHI over three-to-four years to implement the vision outlined in the Roadmap. Some 38 projects are funded to answer two basic questions: How healthy are Canadians? and How healthy is the health care system? Also under development are a health infrastructure report describing the existing health information system, and a two-year strategic plan for moving ahead.
Canada is also dealing with privacy and confidentiality issues, with one focus being the development of harmonized privacy legislation among the provinces and territories. Like the U.S., Canada envisions project-specific linkages rather than a mega-database. 95 percent of Canadians gave their consent to linking household survey information to administrative data for the 1994 national population health survey. To combine privacy protection with controlled data access for researchers, Canada is setting up research data centers in universities around the country.
Mr. Catlin described a major initiative related to the Roadmapa new community health survey that will begin in September 2000 and generate tailored local and regional data for 130 health regions. Other Roadmap initiatives include a pilot project involving person-oriented longitudinal health histories, and the production of annual health reports. Starting in the Spring of 2000, Statistics Canada began reporting on the health of Canadians, with CIHI reporting on the health of the health care system. Dr. Catlin stressed regular reporting as an essential byproduct of health statistics. This reporting, he said, must be done with the public in mind and must offer the information the public wants to know. He also affirmed a priority mentioned by several previous speakers, the need to develop internationally comparable health indicators for use in health surveys and reporting. Canada, he said, would like to work with NCHS and others in moving this forward.
Mr. Catlin concluded by sharing lessons from the Canadian experience. They relate to the challenges of standardization, the importance of cooperation and consultation among a vast number of interests, the fact that the public are amazed at what we dont know, and the need for a long-term investment to realize the vision.
Dr. Detmer proposed that the market value of health has gone up: many people are getting interested in health because of environmental concerns and other factors. Given the likelihood that this interest will stimulate a greater willingness to invest in information, those responsible for information for health must be ready to take action.
Dr. Myron Straf raised the possibility that with the proliferation of private sector data, bad data will drive out good data and people will lose sight of the relevance of population-based surveys. Dr. Lumpkin said the question gets to the heart of how we use population-based data; the latter are needed to provide the denominator that gives meaning to the numerators derivable from administrative and clinical data. Thus, the proliferation of data sources only intensifies the need for community- or population-based sources. Dr. Lumpkin and Dr. Sondik noted the worrisome trend toward the commodification of data.
Dr. Manning Feinleib suggested that basic scientists, especially those in the genome project, should be treated as an important group of stakeholders and involved at an early stage in considering confidentiality and other complex issues.
Ms. Jones observed that more and more people want to know how their individual data compare to population data, in order to know their relative risk and improve their health-related decision-making. This is an application for which health statistics could be used more effectively.
In closing, Dr. Lumpkin noted that the Committee has recently completed three significant reportson computer-based patient records, health statistics, and the NHII. He continued, Now that we have said what we need to do and advised the Secretary on what needs to be done, it is time to do it. Looking ahead, he said the Committee has important work to do with respect to privacy, security, population health and health statistics, and functional status measurement, among other areas.
Finally, he acknowledged the contributions of Executive Secretary Marjorie Greenberg and Executive Staff Director Jim Scanlon and their staffs, without whom the Committees accomplishments would be impossible. He then adjourned the Symposium, inviting all participants to join the Committee and staff at a reception in the Great Hall.
Several speakers came armed with statistics to illustrate the rapid growth of technology, the proliferation of data sources, and the sheer quantity of data now available to health systems and health professionals.(1) Noting the difficulty of managing the speed and volume of this explosion and the fragmentation that often accompanies it, they portrayed these forces as both challenges and opportunities. Proliferation, fragmentation, lack of standardization, and lack of utility were all mentioned as information challenges in the health area, both within the U.S. and internationally.
The point was made repeatedly that to be useful, data must be converted into information and knowledge; and beyond this, that the potential value is only realized when information and knowledge lead to action in such forms as service delivery, reporting, and policy.
A major tension in this area concerns privacy, a theme that wove through the discussions. Many speakers observed that the value of information for health is contingent on having adequate privacy protections. This point was especially salient in discussions of the two vision documents, where the Committee is designing blueprints for the ideal information infrastructure and applications that can only become a reality when adequate privacy protections are in place.
These challenges notwithstanding, the major emphasis of the Symposium was the demonstrated value and unrealized potential of information as a tool for improving health. Brought to the point of service, information can improve decision-making by policy makers, public health workers, health care providers, and consumers. Information technology greatly increases the forms and speed of communication. And given adequate laws, policies, and security measures, it can improve privacy protections. Thus, a strong message to emerge from the Symposium was that information can be a vital resource for health, provided that it is guided by a national strategy based on clear principles and goals. The elimination of disparities was highlighted as an especially pressing goal for health care and population health systems, and one for which better information can make a critical difference.
The question, then, is how to develop the national strategy and use it to take action.
Dr. Detmer moved the discussion in this direction with his call for action and federal leadership and his characterization of the NHII and health statistics visions as a nascent Information for Health strategy. Dr. Shortliffe added a sense of urgency by asserting that now is the time to start the federal action, a point Dr. Lumpkin repeated in his final remarks.
Two questions from Dr. Detmer Whats holding us up? and What do we need to move forward? gave focus to the discussion. His answer, using the information superhighway metaphor, recommended three forms of facilitation: a roadmap, a budget, and a designated driver. Other speakers elaborated on these themes, including Dr. Rices nomination of NCHS for the role of designated driver.
In general, the Symposium discussions confirmed that the two NCVHS vision papers are a good start toward a national health information strategy and infrastructure. In the Canadian experience participants recognized an instructive model and a promising source of future collaboration. Other countries examples were also cited, notably those of Australia and the United Kingdom.
As these nations have shown, developing and implementing an information strategy requires an ample budget and strong leadership. The presenters agreed that in the U.S., only the federal government can provide the leadership and funding needed for this effort.
Dr. Rice and others pointed out that the information infrastructure in general, and health statistics in particular, suffer from underinvestment. Dr. Shortliffe contrasted the 18 percent that American Airlines invests in information technology with the 2 percent invested by the health care industry. Mr. Catlin reported that Canada has budgeted $95 million (Canadian) for its health information roadmap. Dr. Detmer noted that the U.K. has $1.5 billion (U.S.) budgeted to modernize their information infrastructure. He suggested that the U.S. government think in terms of $1 billion a year for seven years.
Several presenters observed that the National Committee, through its collective expertise, commitment, relationship with the Department, and 50-year track record, is well positioned to advise the government on providing the needed leadership. The initial stages have already begun, through the actions highlighted in the Symposium: refining the visions for the information infrastructure, engaging and consulting stakeholders, and laying the groundwork for implementation.
This report was written by Susan Baird Kanaan.
(1) For example, Dr. Blankenbaker noted that there were 10,000 journals in 1951 and there are more than 140,000 today; and given the present trajectory of information generation, by 2020 information will double every 73 days.
November 5, 2001