Minutes of the October 30, 2000 NCVHS Joint Hearings of the Workgroup on National Health Information Infrastructure and the Workgroup on Health Statistics for the 21st Century

Public Health Service

National Committee on Vital and Health Statistics

Meeting of Work Groups on:

National Health Information Infrastructure

and

Health Statistics for the 21^st Century

October 30, 2000

San Francisco, California.

- Minutes -

The Work Group on National Health Information Infrastructure and the Work Group on Health Statistics for the 21st Century of the National Committee on Vital and Health Statistics held hearings on October 30, 2000 at the Canterbury Hotel in San Francisco, California.

Committee and Work Groups members:

John R. Lumpkin, M.D., M.P.H., Chair NHII
Daniel J. Friedman, Ph.D., Chair, Health Statistics for the 21st Century
Jeffrey Blair, M.B.A.
Simon P. Cohn, M.D., M.P.H., FACP
Barbara Starfield, M.D., M.P.H.
Kepa Zubeldia, M.D.

Staff and Liaisons:

Mary Jo Deering
Steve Steindel
Gerry E. Hendershot, Ph.D.
Rob Weinzimer
Debbie Jackson
Patrice Upchurch

Others:

Christina Bethell, PhD, MPH, MBA, The Foundation for Accountability
E. Richard Brown, PhD, UCLA Center for Health Policy Research
Mary M. Cain, MPH, Health Care Horizons, Institute for the Future
James Allen Crouch, MPH, California Rural Indian Health Board
Jonathan E. Fielding MD, MPH, Los Angeles County Department of Health Services
Reed M. Gardner, PhD, University of Utah, Department of Medical Informatics
Peter I. Juhn, MD, MPH, Care Touch, Inc.
Steven Lane, MD, MPH, Palo Alto Medical Foundation
Philip R. Lee, MD, Stanford University
Kathy McCaffrey, BS, MA, RHIA, California Association of Health Plans
Blackford Middleton, MD, MPH, MSC, FACP, Medscape, Inc.
Rita Moya, MS, National Health Foundation
Linda Neuhauser, DrPH, University of California, Berkeley
Michael L. Rodrian, Center for Health Statistics, California State Department of Health Services
David Solet, PhD, Epidemiology, Planning and Evaluation Unit, Public Health, Seattle and King County

EXECUTIVE SUMMARY

The Work Group on National Health Information Infrastructure and the Work Group on Health Statistics for the 21st Century held hearings on October 30, 2000, in an ongoing process to set a vision for the nation in approaching our health information policy. The Work Groups heard 15 presentations and talked with four panels representing public and private, state and local sectors. The purpose of this second of four regional hearings was to obtain input on how to overcome barriers to moving toward NHII.

Overview of the Interim Report, "Toward a National Health Information Infrastructure."

Dr. Friedman said NHII is NCVHS?s attempt to define a future for health information in the United States. The groups began with the broadest notion of health possible, envisioning NHII as a set of technology, standards, application systems, values and laws that support all facets of individual health, health care and public health. NHII consists of three interrelated domains: a personal health care domain, provider domain and community health domain. Its goal is to deliver information to consumers, when and where needed, so they can make informed decisions about health care. The purpose of this hearing is to obtain input on how to overcome barriers. Dr. Lumpkin asked for their recommendations.

PANEL 1:

Peter Juhn, MD, Care Touch, Incorporated
Reed Gardner, PhD, Professor/Chair, University of Utah, Department of Medical Informatics
Blackford Middleton, Chief Medical Officer, Medscape, Inc.

Dr. Juhn approved of the report?s breadth and how it identified relevant issues, but observed it offered a vision but no game plan. Several important groups were not mentioned in enough detail. Dr. Juhn urged the committees to think, not of barriers, but challenges, and posed key questions.

Dr. Gardner emphasized the need to integrate systems and that results are only possible with structure and standards. He recommended training in setting objectives, establishing values and newly essential skills, and urged the committee to be even more aggressive in pushing for the establishment of standards and the patient identifier.

Dr. Middleton noted the principal unresolved issues for NHII are related to perception, privacy rights, data ownership and property issues around health care data, and inability to adopt a national Patient's Bill of Rights to define health care data ownership and property rights. He said the demand for improved patient safety necessitates implementing components of NHII. Dr. Middleton identified two areas of reimbursement reform that could stimulate development of NHII: quality benefit programs and differential reimbursement for automated clinical information management.

PANEL 2:

Steven Lane, MD, MPH, Medical Director of Health Information Management, Palo Alto Medical Foundation
Mary M. Cain, MPH, Director, Health Care Horizons, Institute for the Future
Linda Neuhauser, DrPH, Faculty School of Public Health, University of California, Berkeley

Dr. Lane commented on challenges to adapting the new technology. Information overload can be daunting for providers. Senior physicians express anxiety about changing established patterns of practice. A loss of autonomy can be perceived as systems monitor providers? use of data. Some physicians feel an intrusion on the doctor-patient relationship and question what happens to the healing experience that can come about when this long-term trust is called upon in a crisis.

Ms. Cain noted the report called for discussions about technical and operational barriers, but said little about technical specifications. The next step, she urged, is to create a game plan and a map for moving forward. She said it is imperative to determine where and with whom to begin and how to lay a foundation that encourages use and development by others. Ms. Cain cited two major challenges: identifying investment in integration of information needed to move forward on all levels, and understanding the target market.

Dr. Neuhauser noted that NHII?s definition had the flavor and texture of what people told her. They want information they need, when and where they need it, so they can make decisions broader than what is usually discussed in health care. She approved of the reports and suggested they be broader in scope, deeper in specificity, universally accessible and usable. She advised that NHII be the result of many different public/private partnerships and that the three domains be more dynamically linked. Dr. Neuhauser counseled that, if NHII is to work, it will be more than a database; it will connect people with meaningful guidance. She noted many of these issues could be dealt with simply by letting the users design the content; they would make sure it was useful.

Overview of Interim Report: Shaping a Vision for 21st Century Health Statistics.

Dr. Friedman explained three partners: NCHS, HHS Data Council, and NCVHS share a three-fold goal. One aspect is to develop a vision for health statistics that: (1) reflects a broad definition of health and the health care system; (2) models transactions between the population's health and the system, and other determinants of health; and (3) addresses the relationship and potential synergy between national, state and local data systems, public and private. Another facet is to describe and define disciplines and components to implement the vision. Third is to set clear criteria and a process for evaluating a health statistics system. The subcommittee commissioned a series of paper in this effort. National discussions and a series of local sessions are being conducted, focused on health trends and associated health information needs, and a National Academy of Sciences workshop was held. Several themes emerged in the interim report: (1) there is a lack of clarity about what is meant by health statistics; (2) Americans feel strongly that health statistics have unrealized potential; (3) people felt there was an abundance of health data, but that it is not translated to the extent possible in terms of health information or intelligence. Dr. Friedman spoke of the need to actualize a general vision into something that can be used for. He emphasized the subcommittee?s awareness of how much this planning document and structure need to embody state and local perspectives.

PANEL 3: State and Local, Public and Private

Michael L. Rodrian, Chief, Center for Health Statistics, State Registrar for Vital Statistics, California State Department of Health Services
David Solet, PhD, Assistant Chief, Epidemiology, Planning and Evaluation Unit, Public Health, Seattle and King County
E. Richard Brown, PhD, Director, UCLA Center for Health Policy Research, Professor, UCLA School of Public Health

Mr. Rodrian said a strong point of the report is how clearly it outlines principles essential to mutual success. He emphasized the importance of utilizing economic motivators to drive this system in the desired direction. Value is not only about money; Mr. Rodrian observed it is also about job satisfaction, recognition and other motivators. What is needed, he said, is a common sense of the value to be gained from integrated systems. He suggested that NCHS and CDC, together with HCFA, could ?use their pulpit and economic weight to start the ball rolling.?

Dr. Solet remarked on the reports? broad sweep and candid inventory of system shortcomings. The difficulty, he noted, lies in how change will be accomplished and what shape it might take. Noting political challenges, Dr. Solet suggested a stronger framework to justify the enhanced system. He acknowledged that real-world questions remain about implementation, and suggested next steps should focus on easily accessible, locally meaningful national data, and national support for local data development and data set integration.

Dr. Brown called for the federal government to recognize that producing state and local population-based data for policy making and health planning should be a shared responsibility; substantial resources should be provided to promote collaboration, provide technical assistance and offer states matching funding for surveys. Dr. Brown suggested that CHPR?s experience developing state and local data to inform health policy making in California might serve as a useful model for other states and for national efforts to promote collaborative state and local surveys that help integrate population-based data collection across different levels of government jurisdictions.

PANEL 4: State and Local, Public and Private

Christina Bethell, PhD, MPH, MBA, The Foundation for Accountability
Kathy McCaffrey, BS, MA, RHIA, Vice President Health Care Data and Operations, California Association of Health Plans
Jonathan E. Fielding, MD, MPH, Director of Public Health and Health Officer, Los Angeles County Department of Health Services

Dr. Bethell proposed that the reports position consumers as the key audience and ultimate source of data who need to be fully integrated. She discussed the elements FACCT identified to a consumer-based data and quality and health care data collection strategy, and described five kinds of health care information people seek. Dr. Bethell presented principles (e.g., sustainability, flexibility, acceptability, interpretability) FACCT uses to ?swing through all the measures that could fill in this matrix? and encouraged the Work Groups to consider FACCT?s online-based data collection as a strategy that could be implemented nationally in collaboration with private sector efforts.

Ms. McCaffrey commented on the role of health plans in the national collection of data; identified reasons they have not been involved, and suggested ways that could be changed. Pointing out concerns about standards and stating the importance of uniformity and commitment to consistency, she emphasized the importance of HIPAA. She suggested involving the health plans? accreditation organizations could help resolve difficulties with definitions, and that engaging them in the CHIP projects, Medicaid, and Medicare could help coordinate collections.

Dr. Fielding said the most important thing he could contribute was a realization that, in thinking about health, it is critical to think about multiple determinants. More paired data sets and more longitudinal surveys are needed that take full account of multiple exposures, starting with prenatal experiences and going forward. And he suggested collecting more information on the burden of illness and looking at future health as well as current. Dr. Fielding pointed out that local jurisdictions need better assistance; efficient ways need to be found to provide technical assistance.

COMBINED PANEL:

Rita Moya, MS, President and CEO, National Health Foundation
Philip R. Lee, MD, Consultant Professor in Human Biology Program, Stanford University
James Allen Crouch, MPH, Executive Director California Rural Indian Health Board

Ms. Moya cautioned that the reports underestimate the importance and difficulty of creating the degree of public/private collaboration essential to realizing NHII. She emphasized the cost of change is significant and public and private funding will be needed to implement the Work Groups? proposals through the early stages of reengineering, collection, transfer and use of health information and data. If the public and non-profit sectors are to play a major role in this change process, resources must be identified. Ms. Moya recommended that public and private sources of funding be made available and the role of philanthropic support in creating and sustaining public/ private partnerships be encouraged as a key to change and innovation.

Dr. Lee noted that the interim reports, which he called a major step forward, built on work done in HHS dating back to the foundation of NCHS. He said including a community health dimension is a major conceptual milestone toward integrating population health strategies into NHII. He stated the need for leadership around the issue of collaboration, formal interagency agreements regarding collaborative tasks and accountability. He proposed a Health Information and Communications for America Initiative, a $14 billion investment and a ten-year initiative, that would serve to build out NHII. Dr. Lee said he would like to see more history in the reports and recognition of where the leadership has come from and how much has been accomplished. He recommended utilizing the health field model and developing it by life course and longitudinally for the health statistics.

Mr. Crouch endorsed the report?s focus on having information at the individual, provider and community levels. He noted IHS? broad perspective on public health and their mission to elevate the health status of the Indian community is compatible with the ultimate goals of the Work Groups? proposal, and encouraged them to think about HIS as a test pad for this new vision.

DETAILED HEARING SUMMARY

October 30, 2000

Dr. Lumpkin convened this hearing of two Work Groups of NCVHS, the Work Group on National Health Information Infrastructure and the Work Group on Health Statistics for the 21st Century. Dr. Lumpkin stated both groups represent a major endeavor by the National Committee, to set a vision for the nation as we approach our health information policy. Some long range and strategic planning was confirmed at the last meeting of the National Committee.

Dr. Lumpkin defined the focus of the Committee as balancing and integrating two major tasks. One, directed by Congress, is setting standards for health information policy, most notably, the adoption of the first set of HIPAA rules, concerning transactions. The other mission is to pay attention to the population-based information challenges America faces, as it moves toward a broader sense of health.

Both groups are working to integrate their visions of population-based prevention and data collection to meet the standards-based approach and goals. Their work will be closely integrated in future actions of the overall Committee.

Overview of the Interim Report, "Toward a National Health Information Infrastructure."

Dr. Friedman stated that NHII is NCVHS?s attempt to define a possible future for health information in the United States. Realizing current health information systems do not adequately portray health, he noted the groups purposely began with as broad an integrative notion of health as possible. NHII is envisioned--not as a centralized database or set of databases--but rather, as defined in the interim report: as a set of technology, standards, application systems, values and laws that support all facets of individual health, health care and public health. NHII consists of three interrelated domains: a personal health care domain, a provider domain and a community health domain.

Dr. Friedman stated the broad goal of NHII as defined in the interim report, is to deliver information to consumers, when and where they need it, so they can use this information to make informed decisions about health care.

The purpose of this second of four regional hearings, Dr. Friedman said, was to obtain input on how to overcome barriers to moving toward NHII. He expressed the Committee?s view that these barriers are not solely, technological, but encompass a broader set of policy, communication, and privacy issues. Dr. Lumpkin invited participants to imagine they were in the position of giving advice to the Secretary of HHS on how to make this vision happen and asked for their recommendations.

PANEL 1

Peter Juhn, MD, Care Touch, Incorporated.

Dr. Juhn, CEO of Care Touch, Incorporated, said the start-up e-health company, incubated by Kaiser Foundation Health Plan, provides information (e.g., about needs not covered by traditional health insurance) and decision resources to help consumers interact with the health care system.

Dr. Juhn cited the interim report?s breadth and commented that the report identifies relevant issues critical to making this vision a success. He approved of the order in which key stakeholders were identified (consumer/patient, provider, community at large) and said the report recognized essential facts about today: (1) the Internet is here to stay; (2) it will have a profound impact on health care and may revolutionize how we view health care delivery; (3) the delivery system is not optimally functional.

Dr. Juhn observed the report presented a vision without a game plan. Being an entrepreneur had taught him that it was fine to dream, ?but dreams are hard to eat.? He said the report was a postcard of where we want to go--what was not clear, was how to get there.

Several important groups, Dr. Juhn pointed out, were not mentioned in enough detail: insurance companies, managed care organizations (including the managed health care industry) and the employer group. Employers, he remarked, exert considerable influence.

The health care system is a living paradox, Dr. Juhn observed. Rising costs, dissatisfaction among patients and providers and employers, and growing distrust of the medical profession and traditional hospital institutions put it in disarray. Interest groups prevented comprehensive reform and may block establishment of a true NHII. Yet, we have the greatest arsenal of weapons in history to combat disease, disability, and illness, global leadership in the biotech and genomics industries, and medical research. Patients have an increasing array of choices and sources.

Dr. Juhn urged the Work Groups to think, not of barriers, but challenges. He posed four questions: (1) Who will lead in drafting a road map for this vision? Leadership, he noted, is demonstrating courage in identifying an end point. It is asking: ?How best do we get there?? And it is having the persistence to get through turbulent political waters. (2) Who will participate and how will the Committee get input from stakeholders? (3) Who will pay? (Studies suggest an investment of $200-$500 per person will be needed for infrastructure.) What will they get in return? Will what they get lead to the benefits envisioned? (4) Who will do all that needs to be done?

Dr. Juhn emphasized understanding the business case. What is each stakeholder?s incentive; what will motivate each to fulfill the vision? He recommended building off the four key questions to describe a business case to each stakeholder, focusing on why NHII is vital for their success.

Dr. Juhn invited the Work Groups to consider public/private partnerships. He said government efforts would not be enough, and suggested entrepreneurial start-up cultures could infuse the vision.

Reed Gardner, PhD, Professor/Chair, University of Utah, Department of Medical Informatics, Salt Lake City, Utah

As an example of using data to improve health, Dr. Gardner described how studies show, the best time to give antibiotics was just before the incision for surgery. Everyone knew: given too early or too late, infection rates rose. But nothing happened until ?antibiotics should be given? was put on the surgical schedule. With improved communication, compliance rose from about 60 percent to over 99 percent and infection rates dropped. Does it make a difference if a patient gets an infection? Yes, an increased length of hospital stay, averaging about $5,000 more in cost. Even, the risk of dying is six times greater. This isn't a technology problem, he said. It is a communications problem. We have to integrate systems, and can't without standards.

Dr. Gardner showed a computer screen that, in one view, identified the patient, room, gender, diagnosis, white count and temperature, and computer-generated recommended antibiotics. A human can collect that data in 15 minutes; the computer presents in 10 seconds. You can do this with a structured database and standards. Moving this to other hospitals in the corporation was difficult, he explained. Definitions and structure were different. They had to ?go back through everything, paying a huge price to do simple things.? Dr. Gardner noted the recommendations in the report and urged the committee to be even more aggressive and ?push the envelope.?

He discussed how a first-look at adverse drug event rate found only nine events in the 425-bed hospital for the whole year. The next year, with a computerized search, looking for antidotes and other identifiers, adverse drug events soared beyond 373. Old tools and reporting mechanisms did not adequately report adverse events. Dr. Gardner said, ?We now find them quickly. We know how to prevent them. And that does make a difference. If you have an adverse drug event, you spend two more days in the hospital, it costs $2,000, and you have a three times greater chance of dying.?? Dr. Gardner recommended providing training in setting objectives and establishing values and newly essential skills. Anything the Committee does to make a more structured process for nurses and physicians will be helpful.

. Dr. Gardner urged the Committee to push for the establishment of standards and the patient identifier. ?If I go from one hospital to another, I want to be able to take my record. I want it in machine readable form, structured so that we can do decision making from it.?

Blackford Middleton, Chief Medical Officer, Medscape, Inc., Hillsboro, Oregon, Associate Professor of Medical Informatics and Outcomes Research, Oregon Health Sciences University.

Medscape is a vendor of clinical information management tools and provider of online services and health care information for both professionals and patients. Dr. Middleton commended the Work Groups for providing vision into critically important areas of our health care delivery system and said the interim report?s perspective is consistent with Medscape?s work.

While the report provides insight into what might be realized with NHII, Dr. Middleton noted less than 5 percent of outpatient clinics and 10-20 percent of hospital environments have a computer-based patient record or system for physician order entry. Hospital environments rarely have integrated clinical information management systems designed for the clinician--and less for the health care consumer. Few clinical practices have systems that provide clinical information management for the physician and care providers.

Chaos within the system limits new technology adoption for health care information management. Many physicians? practices and hospitals struggle to survive amidst organizational upheaval, reimbursement restructuring, cost containment, and managed care. Investments in technologies are not seen to have immediate benefit and can be difficult to justify. Rapidly changing organizational affiliations, mergers and acquisitions, make it difficult to invest in technologies that better interface one health care setting with another. Politics of information lead entities to hold close health care data needed to run their business.

Dr. Middleton suggested a main reason electronic record technology remains a low priority in the marketplace is that physicians are capital poor. Another is that forces that stand to benefit are not aligned. He noted that in organizations where providers, payors, hospitals and, occasionally, employers are allied (for example, Kaiser Permanente and the Veterans Administration) large-scale capital investment in clinical information management technology occurs.

Numerous technology issues remain unresolved for NHII. But even if they were resolved, Dr. Middleton asserted, there would not be immediate widespread consensus to pursue NHII. The principal unresolved issues for NHII are related to perception, privacy rights, data ownership and property issues around health care data, and inability to adopt a national patient's bill of rights or other legislation to define health care data ownership and property rights.

Health care consumers are aware of their frustration with accessing care, pharmaceutical and health care costs, difficulties with reimbursement, and--for 44 million Americans--the absence of adequate health care insurance. They are focusing on privacy and confidentiality perceived risks, rather than the potential for improvement in health care service delivery and convenience. Only when they perceive that having an online health record can make them feel better about their health care and maybe save their lives, will it become an expectation.

Reasonable expectations need to be defined for patients contributing anonymous data in aggregate form for health care research and for providers involved in recording and gathering information or using it in secondary analyses. Dr. Middleton expressed hope that such issues may, at least, be partially resolved with the final regulations from HIPAA and, hopefully, a Patient's Bill of Rights. He added that the HIPAA bill might also compel some clinicians to adopt clinical information management technology to address requirements.

Dr. Middleton suggested other motivations for NHII beyond the technology and policy initiatives outlined in the interim report: (1) As employee benefits in health care defaults to defined contribution health plans, employees managing their own health care dollar will be increasingly sensitive to delivery service and convenience issues. NHII can provide them with access to performance data on physicians, hospitals and plans. (2) Similarly, employers facing escalating health care costs look for means to judge health care expenditures. Health care purchasing cooperatives and other coalitions have already formed to rationalize and control health care expenditures and they need health care service, satisfaction, quality and outcomes data.

Both health care consumers and payors are recognizing that medical error contributes to health care costs. Medical errors that the Institute of Medicine?s report cites are a leading cause of death in this country are largely due to the lack of a systems infrastructure that supports decision-making at the point of care. Demand for improved patient safety will necessitate implementing components of NHII, particularly tools for improved clinical information management and decision support.

Noting that some 85 percent of health care costs result from physician decisions at or near the point of care, Dr. Middleton proposed that the best way to apply scarce resources in technology investments might be to apply them to physician order entry and computerized prescription management. Dr. Middleton also suggested focusing on prioritizing standards development in a cost effective way: pursuing standards that have immediate impact, and following the 80/20 rule.

He said the strongest pressure for NHII might come from consumers accustomed to round-the-clock access to online banking, travel services and information resources. Changing expectations for health care service and convenience will necessitate information technology investments among all stakeholders. Dr. Middleton described a model of chronic disease management where patients and providers are continuously connected over the online health record. Symptoms and physiologic parameters recorded by the patient remotely will be securely sent to the physician's record system, providing the physician with an ongoing view of the patient's progress and care management.

Dr. Middleton said reimbursement reforms such as quality benefit programs and differential reimbursement for automated clinical information management might stimulate NHII development.

As physicians? performance in health care delivery systems increasingly are evaluated in terms of patient satisfaction, quality and outcomes, progressive health care delivery systems will motivate physicians to perform on these measures. Dr. Middleton described how physicians in his clinical practice environment use the EMR to record key clinical data. The practitioner's compliance with standard preventive services guidelines and other enterprise health care protocols and goals is assessed annually. Physicians over the target threshold receive extra income. Data from the record is used to benchmark the physician, creating an incentive to use the electronic record tool.

Differential reimbursement for automated clinical information management is another incentive for buy-in. While some physicians receive malpractice premium discounts for using electronic medical records, payors have yet to recognize how quality of the data arising from a well-designed EMR simplifies their reimbursement process and provide differential reimbursement.

From a technology point of view, NHII may best be achieved by investing less money in high-end complex technologies and more in technologies that simplify complex problems. Dr. Middleton recommended focusing research on simplifying complex problems like clinical information management methods for basic secure interoperability, simple document and data representation, and ease of use for both provider and patient.

The NHII will not result from technology innovations alone. Forceful functions are needed in the marketplace and in business models to create requirements that will stimulate NHII?s adoption. Health care data, privacy, confidentiality and security attributes, as well as property rights for health care information all need to be defined, so that we can pursue the monetization of health care data.

Costs of NHII need to be equitably distributed by allowing self-interested parties to pursue NHII through incentive programs and reimbursement reform.

Discussion

The participants began by deliberating on two questions. Who should lead? and, Who should pay? Dr. Juhn observed that leadership has to be unbiased, credible and have public backing. Government, he said, has an opportunity to ?step up to the leadership plate.? Payment, he added, depends upon the business case, incentives and alignment. Everyone who benefits from having online medical records should pay. Dr. Gardner looked to the example of the National Library of Medicine and Medline. The government made Medline free; that public service has been of tremendous value. NCVHS and other committees are positioned to take leadership, he said, and suggested that cooperation with industry and standardization are both needed. The government needs to pay for the standardization process; building infrastructure is not a cost institutions should pay. With infrastructure and standards available, institutions would do well gathering data and providing high-quality health care at a lower cost.

Dr. Middleton spoke of the opportunity for continued leadership between NCVHS and NCHS. He cautioned that fundamental, structural issues around values would not be overcome until we have organizational and reimbursement reform. He noted there already was a loss of confidence in the health care delivery system and questioned if reform had to wait for a worse crisis to spur action. He suggested, ?starting simple, then scaling the mountain,? focusing on standards around minimal data sets, minimal chart attachments for claims, secure interface interoperability issues, and XML document-type definitions for basic information exchange between systems.

Leadership, Dr. Middleton reflected, will come from public/private joint ventures. Emerging payors are taking the lead with investments in information technology to support management of their health care dollar: for employer's it is health care risk, for pharmaceutical companies it is health care investment. Establish the value chain, and people will line up to pay.

Payors, he noted, have yet to pull their oar in an equitable manner. Physicians and health care delivery systems have paid the majority of the bill for health and technology investments. If payors adopted a differential reimbursement scheme or paid for quality, adoption of this technology would be widespread. All parties should pay and benefit, but some basic reform or structure needs to be in place around data property rights and attributes.

PANEL 2

STEVEN LANE, MD, MPH, Medical Director of Health Information Management, Palo Alto Medical Foundation, Palo Alto, CA

Dr. Lane introduced himself as a practicing family physician speaking from the perspective of a health care provider trying to adapt to this technology. The Palo Alto Medical Foundation began in the early 1930s, became a non-profit foundation in 1980, and now is the second largest medical group in California. An outpatient electronic medical record has been part of its clinical information systems strategy for six years. Focus has been on outpatient EMR, though work is underway on inpatient EMR, Internet and Intranet tools, and Web-based patient services. Dr. Lane suggested the system, built on commercially available products, might be viewed as ?a canary in the mine? when considering what it is like for a group to live out this NHII vision at the provider level.

The foundation has been struggling with the challenges of information capture, storage, communication and presentation for providers. They have been working to develop and implement standardized terminology within various affiliated groups. Clinical protocols, practice guidelines and decision support tools have been implemented and evaluated in the examining room. The spirit of the anticipated HIPAA guidelines has been adopted to ensure the security, confidentiality and permanence of the individually identifiable patient information in their clinical data systems.

Having all this information available serves the goal of quality care. But, for the doctor, the information overload can be daunting. Dr. Lane described the experience of computerized prescription management. The patient has a sore throat and you want to write a simple prescription. The system checks if the patient is allergic to what you prescribed. It checks, too, for interaction with other ?meds? the patient takes, and you are presented with this information and think about it. Then there is formulary checking to determine compatibility with the patient?s insurance requirements. Alternative medication alerts scan best prescribing practices. More best practice alerts inform you about organization-wide practice guidelines on the Intranet. Then you must specify the patient preferred pharmacy for electronic transmission. Prescribing a medication becomes complex. Decision support tools have to be filtered to prevent analysis paralysis.

How does a physician take into account a patient's lifelong medical record and all the variables in five minutes? Dr. Lane wondered if ?ignorance can lead to efficiency? and reflected that has become the way a lot of physicians practice. Providers have to digest and respond to all that information; that process has to be considered as systems are designed.

Dr. Lane addressed the perception of a loss of autonomy. The system that allows providers to access this wealth of clinical data also monitors their use of that data. There are benefits: benchmarking indicators of productivity and quality care. Still, physicians can perceive a threat. Some senior physicians express anxiety about changing established patterns of practice. Dr. Lane expressed concern that the clinical judgment and acumen earned through years of medical practice might be inversely proportional to the successful adoption of new technologies.

He suggested that the doctor patient relationship is also challenged. The benefits of real time information access and decision support require that computers be brought to the point of care. But some physicians see this as intruding on their communication with the patient, and incompatible with developing a trusting personal relationship between provider and patient. He questioned what happens to the healing experience that can come about when this long-term relationship is called upon in a crisis--as patient information is codified and digitized and made available across the networks. What happens, Dr. Lane queried, to the tenet of continuity of care when the provider's role becomes serving as intermediary between an ill patient and their database? He acknowledged that he did not have an answer to these questions physicians ask him every day.

Dr. Lane considered the goal of patient ownership of, and complete access to clinical data laudable. He cautioned, however, that it could change documentation practices of providers concerned about revealing sensitive information in unfiltered ways. And a patient?s ability to edit the record could introduce inaccuracies. How do you ensure patients make the right choices transferring information from provider health records to personal health records? If provider's access to clinical information is restricted, based on a rubric of appropriateness to the patient situation, who makes that call and how does that impact on quality of care? How is the safety of clinical providers affected if information about communicable diseases is kept from them?

Dr. Lane addressed capital costs that are new line items in health care budgets. Rising expenditures for hardware, software networkings, and upgrades are challenges to meet on an annual basis. Operational costs are substantial. Some savings anticipated in medical transcription, medical records maintenance and transport have turned out to be notable. Some lower level positions will start coming out of the budget, replaced by more highly paid information technology professionals.

Issues of physician income come up frequently. The clinical data systems and new methods of electronic communication facilitate asynchronous and remote care. The organization is moving in that direction, but there are no reimbursement models for care provided outside the traditional office or hospital setting. Dr. Lane suggested the Work Groups consider models and help determine how providers will get paid for the work they do utilizing these tools.

Dr. Lane cautioned that many small organizations will be driven to an ASP model for data security, with their individually identifiable patient data residing on a third party patient data warehouse. He remarked on the value in that data and noted that there are no legal protections in place to ensure its long-term safety.

He recommended that the committee involve all providers in the discussion and planning of implementation, focusing on who will pay. He cautioned against relying on the market to provide solutions--and inadvertently and irreparably losing important aspects of the physician-patient relationship that evolved over a century of medical practice.

MARY M. CAIN, MPH, Director, Health Care Horizons, Institute for the Future, San Francisco, California

Ms. Cain described Institute for the Future as a small, independent, non-profit think tank that concentrates on creating environmental landscapes five-to-ten years out and has done health care forecasts for 15 years. She credited the interim report for being a wonderful, though vague, vision. Ms. Cain noted the report called for discussions about technical and operational barriers, but had little to say about technical specifications. She urged the groups to create a game plan and a map.

Noting that creation of NHII will consume a great deal of time and effort, she said one barrier is initial paralysis at the nature and size of the task. It is imperative to determine where and with whom to begin and how to lay a foundation that encourages use and development by others. She emphasized the importance of identifying early adopters, first intensive users who will populate the databases with information about which they care, have ongoing interest, and envision a future.

Ms. Cain called NHII?s definition all encompassing, but cautioned it could become a moving target. She cited two major challenges: identifying where investment in integration of information needs to be made to move forward on all levels, and understanding the target market.

One finding of a recent five-year forecast, Ms. Cain reported, is that online health consumers are not all the same. They have different needs in terms of health status or concerns about privacy. The chronically ill individual who frequently revisits disease-specific Web sites has different privacy concerns than a well individual responding to a promotion online, or someone just diagnosed with a serious illness. Another continuum reflects how much attention one pays to their health. Someone who is chronically ill, but tenaciously downplays his condition, may act like he is well, while someone in good health, but hypochondriacal, may behave like the chronically ill. Market research estimates of online health consumers range from 55 million to over 100 million individuals; teasing out the differences in that consumer segmentation will be a challenge. Understanding whether they are sick or well, why in their case they create an online personal health record, and what their threshold of privacy concerns are, vis-a-vis a desire for personalized health care and content, will map the likelihood that certain individuals will use the Internet for health information, while others never will. Ms. Cain found online health consumers fickle. They respond to coupons and promotional materials, but do not revisit a site. Ms. Cain suggested examining how and why individuals with different motivations populate personal health record databases.

Noting the interim report suggested consumers might support this venture, Ms. Cain posed three questions. What would individuals be paying for? Why? And, could they opt out?

Public health officials will be primary end-users in the community health dimension. Ms. Cain stressed the importance of understanding the different needs, resources, and challenges in public health departments that range from large metropolitan public entities with considerable resources to rural county public health departments, where the local public health officer is also the school nurse.

Investment is needed in the integration of information. Blackford has shown that health care information is incredibly fragmented and controlled by groups who value control. This territorial nature needs to be overcome. An important part of the investment, she noted, is in the creation of alliances and relationships and addressing political issues around sharing information. Ms. Cain reminded the Work Groups they were positioned to create incentives for collaboration and consolidation of effort.

She cited a need to invest in access. Addressing consumer access begins with identifying who they are. Assisting provider access involves making it equitable for everyone, wherever they are. Ms. Cain also noted the need for investing in networks: creating incentives to join, ways to keep increasing the number of individuals, amount of information and quality.

LINDA NEUHAUSER, DrPH, Faculty School of Public Health, University of California, Berkeley, Berkeley, California

Dr. Neuhauser commended the committee on excellent interim reports and suggested, based on her experience as a grass roots worker with consumers, that the final report be broader in scope, deeper in specificity, universally accessible and usable. She also suggested that NHII be the result of many different public-private partnerships and that the three domains identified so far be more dynamically linked. She urged that the design of NHII be grounded in experiences of ?real? people.

Dr. Neuhauser described her work in a UC Berkeley group with a mandate to develop and disseminate health and wellness information for all Californians. The group started 12 years ago with a traditional public health approach: experts determined the main health issues facing Californians and the best behavioral and health care solutions. Before the guidebook was published, someone had the presence of mind to show it to users. Diverse communities trashed the expert advice. The topics were not ones that mostly affected their health. Solutions were condescending, impractical and ineffective. What people said they needed was to be wired into a variety of services to improve their health and well-being. The grouped reformed with a participatory approach and the philosophy that people actually know what they need and will tell you, if only you listen.

They listened to thousands of people: all backgrounds, age groups, ethnicities, health conditions and disabilities, socioeconomic and language groups. And they asked: (1) What affects your health and well-being? (2) What would you do about these issues? (3) What services do you need to connect to in order to improve your health and well-being? Often, people did not talk about things public health professionals focus on. They talked about managing their lives: childcare, violence, transportation issues, education, and jobs. They said they needed to be connected to services in their neighborhood. This accumulated information along with refocused input of experts in many fields was assembled as a guide for Californians in the format and words suggested by the people who use it.

The group worked with private industry, foundations, philanthropy, educational institutions, and government. Discussions with competing phone companies resulted in a clear, people-oriented taxonomy of community services in phone books throughout the state. Advertising firms suggested marketing techniques to reach and motivate people, something public health professionals are not known for achieving in their educational materials. The guide is being brought online, with continued guidance from communities.

Dr. Neuhauser noted both reports mention the difficulty in realizing a good definition of health. They convey a desire to move away from a disease or medical care approach and acknowledged the WHO definition, a more Utopian vision of perfect physical, mental and social health. She observed, ?We are stuck between disease and Utopia, without a road map.?

As the reports indicate, the factors determining health are complex and difficult to gauge. Some 80 percent of our health budget goes to health care, which only affects 10 percent of a person's health status, according to current estimates. Environmental and genetic factors are double that, another 20 percent each. The lion's share is composed of social and behavioral factors, including the many decisions we make every day that affect our health.

One of the most powerful factors is the perception of one's control over diverse issues in one's life. A sense of being able to control our lives is emerging as the dominant determinant of one's health: more significant than smoking cigarettes, diet or exercise. Viewed this way, moving toward health is a matter of handling our life events better. That definition is not found in our usual health silo, but Dr. Neuhauser hears it every day. She identified biochemical pathways that may raise blood pressure, depress immune systems, and develop plaque in the arteries--all resulting from the stress of the life events we struggle to manage.

Dr. Neuhauser noted that NHII?s definition had the flavor and texture of what people told her. They want information they know they need, when and where they need it, so they can make decisions. And their decisions are a lot broader than what is usually discussed in health care.

Another barrier or challenge, she observed, was weak links between personal provider and community health domains that need to be systematically diagrammed to show their dynamism. Everyone had mentioned the lack of multisectoral partnerships, she observed, adding that the spirit of NHII would be developed, if the government did it or not. It would be unfortunate if the private sector developed NHII without government leadership and a sense of social responsibility.

Dr. Neuhauser had asked a group of 30 disability organizations what advice they would give the committees. They said they needed a road map on how to use NHII. Where do we start? How do we search? How do we know to believe what we hear? If NHII is to work, Dr. Neuhauser counseled, it will be more than a database; it will connect to people with meaningful guidance.

Dr. Neuhauser quoted from the Children's Partnership Organization?s report on underserved Internet users and inadequate content. People said they want practical, local information to solve everyday problems. They also want culturally relevant information, prepared for non-English speakers, at a basic literacy level. Six percent of available sites provided local, specific information. One percent was culturally relevant. One percent had a basic literacy level. Two percent of content was for non-English speakers. About 10 percent of the sites provided disability accessible information. Some 50 million Americans are not being served by available content. Dr. Neuhauser said she had been thinking about a scenario in the report featuring ?Mary Jones? and considered how the report might be improved, when she realized something about Mary was never highlighted. Mary is a wheelchair user. Electronically she received a provider?s suggestion that she go for a mammogram. So, where is the bus that can take her and her chair to a clinic where they both can get through the door?

Dr. Neuhauser suggested: (1) Develop national portals that encompass broad health and wellness information. She acknowledged this was ?outside the silo? and could be disconcerting, and offered an innovative model, an initiative of the Governor's Office of Innovation, Life Event and Affinity Design. LEAD is an effort to design, through community input, an e-government portal for Californians covering all kinds of information using a life events model. (2) Create informational links (zip code based, easy-to-use, print and on-line) to local service connections across the United States. (3) Involve communities in developing local NHII information. The report is top heavy on leadership. Many communities in California develop (and share with others) self-authoring tools and local information. Templates can be developed that people can use to find specific health information that can be pooled and made able to everyone. (4) Initiate universally usable content. Disability issues are not reflected in the report; they need to be included with standards. (5) Provide guidance on using the NHII in practical ways. (6) Dr. Neuhauser noted that many of these issues could be dealt with simply by letting the users design the content; ?They will make sure it is useful.?

Discussion

Dr. Lane observed that, so far, the market had been leading, and questioned whether everyone was being led down the right path. The private sector had the upper hand in terms of financing; that needed to be re-evaluated. He cautioned that provider groups would not be able to keep up with demand. The government needs to help define what will be required of providers and health care organizations to meet standards. Payment needs to reflect the size of organizations involved, with a sliding scale built-in from the provider perspective.

Ms. Cain called for a fair amount of public/private partnerships. She suggested the government could lead by mandating in terms of Medicare reimbursements, HIPAA legislation and collaborative relationships and alliances. A lot is already happening in the market to create infrastructure. Pharmaceutical companies produce most health information online; not involving them, she said, would be a mistake.

Dr. Neuhauser noted how often she heard payment should be shared and come from many different sectors. Government needed to contribute a substantial amount. Ways must be- found to partner with industry, foundations, and community organizations. California provided examples of how, using a participatory, democratic approach, infrastructure could be developed at the local level. With self-authoring tools, everybody could get involved.

Dr. Lane drew upon experience as a thin margin not-for-profit provider in Silicon Valley, to underscore the need to plan how to arrange partnerships between for-profit and not-for-profit sectors. He emphasized managing relationships so tools are developed that meet everyone's needs.

Ms. Cain observed that there is no such thing, any more, as a linear value chain. Organizations align differently. A pharmaceutical company supplies drugs, but also receives information. Information value networks are being created and the government has the ability to frame the discussion and take the lead role.

Ms. Cain discussed leadership in the public/private partnership, e.g., the Internet health care coalition, High Ethics and Health On the Net. The coalition is an industry and market driven effort comprised of individuals from public and private organizations. They formed a collaborative effort with one voice and initiative. As leaders, they have involved the government and industry and look to the government to anoint the final set of standards. Dr. Middleton concurred that the government, as a payor, should be at the table as one more party, self-interested in arriving at standards that spur the adoption of this technology and initiatives. Dr. Lane encouraged the role only government can play ensuring compliance with these guidelines. He said the Internet recommendations are a case in point. An organization might sign and put the seal on their Web site, but it is not legally bound. Dr. Lane emphasized the need to create an environment with governmental regulation that ?had teeth.?

Dr. Neuhauser suggested the federal government had a role in ensuring that disability standards enacted in section 508 of the Work Force Investment Act are implemented throughout the states. Mr. Blair thanked Dr. Neuhauser for her perspective that pointed out a broader definition of health and health care and how what consumers really want differs from what many in the health care professions define. He asked for materials supplementing the testimony so the Committee could gain a broader, deeper perspective.

Dr. Neuhauser remarked that the interim format comes off overly conceptual and suggested a visual presentation. A map could show how the three domains link and connect on to the different public and private sectors. It could go from a fundamental definition of health all the way to grass roots users. She advised that specificity of recommendations would help clarify different domains and sectors and what is proposed.

Ms. Cain cautioned that if the committee did not move quickly, the market would decide how this takes place with its own incentives. She urged the committee to ?look for low hanging fruit.?

Overview of Interim Report: Shaping a Vision for 21st Century Health Statistics.

Dr. Friedman

Dr. Friedman recapped the process that resulted in the interim report on Shaping a Vision for 21st Century Health Statistics. It began in 1998 with the encouragement of Ed Sondik, director of NCHS. Three partners: the U.S. Department of Health and Human Services Data Council, NCHS, and NCVHS share a three-fold goal. One aspect is to develop a vision for health statistics that: (1) reflects a broad definition of health and the health care system; (2) models transactions between the population's health and the system, as well as other health determinants; and (3) addresses the relationship and potential synergy between national, state and local data systems, public and private. Another facet is to describe and define disciplines and components needed to implement the vision, as well to set criteria and a process for initial and ongoing evaluation of a health statistics system.

A series of papers, commissioned by the Committee, are available on the NCVHS Web site. Along with national discussions in Washington, a series of local sessions have been conducted in Albuquerque, New Orleans and Harrisburg focused on health trends and associated health information needs. A National Academy of Sciences workshop was held last year.

The interim report summarizes what has been learned, and several themes emerged clearly. One was our lack of clarity about what is meant by health statistics. The interim report definition, developed for the Committee?s own guidance, is that health statistics constitute health data that can be generalized to a known population of individuals, organizations or institutions. Health statistics can be used to design, implement, monitor and evaluate specific health programs and policies. Properly organized and communicated, they enable us to assess local or national health, mobilize to improve it, and evaluate efforts. Health statistics are policy and program related.

Another thing learned is that Americans feel strongly that health statistics have unrealized potential. Three reasons were pinpointed for this untapped potential: (1) our failure to deal with health statistics--specific privacy and confidentiality issues; (2) the lack of data standards, a multiplicity of standards where they do exist, and the multiplicity of data silos; (3) lack of a coherent organizing structure: conceptual as well as planning.

People felt there was an abundance of health data, but that data is not translated to the extent it could be in terms of what Robert Spassoff describes as either health information or health intelligence. This is evident in: issues around local, state and national comparability, smaller populations, special need populations, and in our lack of data on health as opposed to illness. Dr. Friedman said the Work Groups looked forward to hearing from participants about these issues. He emphasized the Committee?s awareness of how much this planning document and structure needed to embody state and local perspectives.

The document includes the interim report and within it a series of principles for moving forward. Privacy, confidentiality, and the need to develop the equivalent of fair information practices for health statistics are a primary focus. Next steps include more regional hearings in Raleigh, North Carolina and in Washington, D.C. The Work Groups intend to develop a market basket of health statistics-related privacy and confidentiality issues and potential solutions as well as the final report. Dr. Friedman emphasized an awareness of the need to operationalize what had been laid forth in a general vision into something that can be used for local, state, and national planning.

PANEL 3. State and Local, Public and Private.

MICHAEL L. RODRIAN, Chief, Center for Health Statistics, State Registrar for Vital Statistics, California State Department of Health Services, Sacramento, California

Mr. Rodrian spoke for the National Association for Public Health Statistics and Information Systems, whose members include directors of state centers for health statistics, registrars of vital records, and information system managers engaged in health statistics. He congratulated the Work Groups on addressing critical issues confronting state and local public health agencies. He noted the struggle to meet diverse health information requirements of public and private partners using a disparate array of independent legacy data systems developed over the last century. A strong point of the report, he noted, is how clearly it outlines in one document essential principles to uphold working together to improve public health data, statistics and information systems throughout our communities, states and nation. He approved of the mention of international systems and standards for organized systems. His concern was about issues of implementation.

Economics derive much of our behavior, he observed. Measured often in dollars, economics ?is also about where and how we spend our time. It is about values, about how we use societal mechanisms to drive motivation to achieve what we value.? He emphasized the need to recognize how to utilize economic motivators to drive this system in the desired direction.

Form follows funding. To realize substantive change in health information systems, Mr. Rodrian proposed, change the motivators and focus on, ?Who gets what value?? ?And who pays?? Value, he reiterated, is about job satisfaction, recognition and many other motivators valuable to anyone engaged in this system. Funders frequently perceive and define value narrowly, providing scarcely focused funding. Silo development demonstrates this is especially true in governmentally funded data systems. Today, he asserted, people are seeing interrelationships that could add value to our efforts and collective health. And changes in the cost and mobility of electronic systems are transforming our sense of what is possible. Today, one could say form follows perceived value.

What is needed, Mr. Rodrian observed, is a common sense of the value of integrated systems. He said the interim reports were an excellent start. Anyone working on the design and function of information systems needs to focus on designing end-value for those providing the data we need. As state registrar for vital statistics, Mr. Rodrian said he knew how valuable the data he received was when packaged and provided to users--but he had only begun to realize how little time he spent returning value to the hospitals, doctors, nurses, clinics and funeral homes critical to his data supply.

He suggested that NCHS and CDC, together with HCFA, could use their pulpit and economic weight to ?start the ball rolling.? Their influence, along with consolidating public health data with HCFA, Medicare and Medicaid data, could kindle the entire health professional community.

Mr. Rodrian emphasized that the ten principles in the interim report are essential to our mutual success. He pointed out several factors that are critical to effective implementation of this vision. One is the need to find a balanced approach to privacy and data security. The difficulty and cost of keeping data secure is directly proportional to its perceived value. Instituting clear, significant disincentives reduces this cost. Principle one, he said, could speak to this.

He remarked that the principles seemed to equate public health monitoring with research, and noted this is a problem for most state and local public health agencies, which conduct little health research, but use data to follow up with individuals needing assistance. He suggested principle two should clarify that not all data collected is for research.

He commended: (1) principle two?s conceptual framework; (2) recent steps HHS, CDC, NCVHS, ASTO, NAPSIS and others have taken toward defining the national standards-based, Web-enabled information infrastructure; and (3) standards put forth through CDC's NEDS cipher project. But to succeed, he stressed, ?We will need to leverage financing and human resources necessary to implement our vision.?

Mr. Rodrian emphasized returning data quickly to each data provider and the enhanced ability to view one?s own data in a meaningful community, professional and geographic context. He envisioned a business-oriented Web site that would support electronic submission from those reporting health data to his department, irrespective of where that data ultimately went. And principle four should mention adding value for data suppliers..

He agreed with the necessity for compatible standards presented in principle five, but urged mandating participation in SSOs that established X12 and XL7. He recommended both bodies develop fasteners to provide linkages between administrative and non-administrative data. He also recommended that a percentage of each federal grant for state or local health program activities, including grants for public/private partnerships, go to establishing and implementing standards.

In order to meet principle six?s mutual goal of unitary data collection for multiple purposes, Mr. Rodrian said the nation must create clear fiscal incentives for data standardization and integration by state and local partners, public and private. Incentives are needed for those providing health administrative and service delivery data useful for monitoring health status.

Mr. Rodrian recommended gathering and considering the best scientific evidence available regarding criteria and methodologies for linking data from two or more databases to establish unique identifiers. This evidence base could contribute to the development of national guidelines.

As a state center director, Mr. Rodrian emphasized the importance of principle seven. Local communities and statewide stakeholders need maximum user-friendly access to health data and information. He suggested more time should be focused on data sets and tools providing graphic presentations of aggregated data (including GIS systems) via the Web at the zip code level.

Mr. Rodrian expressed concern that principle eight was too abstract. He cautioned that, without stable, well-managed resources, it would remain only a vision. He recommended 10 percent of federal dollars designated for state or local health program activities, including administration, service delivery, and health status assessment, be allocated to establishing or adapting systems to meet these standards. He said this national forum and document could encourage economic lever.

Creating and maintaining health data and information relevant to policy, as outlined in principle nine, is important but daunting for most states and communities. Mr. Rodrian urged that this principle include the concept that the federal government develop and publish a matrix comparing local health data required to assess Health People 2010 objectives with current data. Documenting the gaps would support local and state agencies in data development and integration.

Mr. Rodrian said that a focus on incentives that foster collaborative national, state and local efforts, alluded to in principle 10, is a key step toward accomplishing this vision for health statistics. Succeeding, he advised, depends upon demonstrating in economic terms the value gained by everyone involved in supplying, collecting, and reporting data. He encouraged the Work Groups to clearly address the economic value expected from such collaborations, and said he hoped documentation of existing collaborations at the state and local level are included in the strategic plan along with recommendations for replication funding.

DAVID SOLET, PhD, Assistant Chief, Epidemiology, Planning and Evaluation Unit, Public Health, Seattle and King County, Seattle, Washington

Dr. Solet, who commented on the report from the perspective ?of local folks doing assessment in small areas,? began by acknowledging his co-contributors; Alonzo Plough, Director of Public Health, Seattle and King County, and Jim Krieger, a senior epidemiologist in the planning and evaluation unit that does community assessment. He said they welcomed this opportunity to revamp a system that needs work, and build consensus about what people really need. He approved of the interim report?s relevancy. He noted it?s broad sweep and candid inventory of shortcomings--a slice of local health folks? experience. He said the report laid groundwork for sweeping change. The difficulty, he noted, lies in how change will be accomplished and what shape it will take.

Dr. Solet posed questions about addressing this vision in the real world. Where is the incentive for a sometimes-fragmented federal system to integrate? Will local needs be representative in an ongoing way? Is this a zero sum scenario? If not, where will additional resources come from?

Noting the proposal will face political challenges, he suggested a stronger framework to justify the enhanced system. He expressed hope that the framework will enable end-users and the public to sign on to what this new system will look like. Dr. Solet suggested: (1) more background including a historical perspective on the upstream movement of data collection toward health behavior and social determinant data; (2) examples on how data can improve health status; (3) more about what the principles are based on. They saw this as a strong piece of work they agreed with, but it was not clear how the principles grew out of the report.

He discussed new data sources, data set linkage and integration, extending national data to the local geographic level, new data dissemination resources, standards for data and analytic methods, and support for developing local data meaningful to the community.

Dr. Solet suggested that disease registries would be a vital new data source; e.g., no one knows the incidence of diabetes and asthma in the community. He emphasized the need for comprehensive environmental exposure data-- local health departments are increasingly called on to deal with environmental issues. In some states, he noted, there are no outpatient or emergency department reports: no way of knowing what happens to anyone not admitted to a hospital. There is interest at the local community level for more detailed race ethnicity data. And numerator and denominator data is inadequate for many secondary data sets that go into health assessment. Noting that social determinants of health effectively explain differences in health status between populations, Dr. Solet said it would be helpful to have more of these data measures.

Some linkage between environmental exposures and health outcomes would also be extremely useful on the local level; currently only gross measures are available. Linkage would also merge health plan Medicaid data sets and population-based data enabling: (1) assessment prevention activities in Medicaid and other managed care settings; (2) assessment of the impact of clinical prevention strategies on the population; and (3) monitoring population-based prevention and health outcomes related to health care system delivery changes.

Extending national data sets (a model that works well in behavioral risk factor surveillance system data) to the local geographic level would help local assessment, Dr. Solet said. Surveys and over-sampling on the county level result in small-area estimates on behavioral risks, health care access and health status. A unified system for obtaining local area data would be useful. Dr. Solet described creative data dissemination projects that provide local assessment data to communities and suggested federal support for standards and implementing those already developed(1). He remarked that ease of access and technical support would help when using national data sets for comparison. Timely availability of data sets would also help. Lag time affects credibility and ability to deal with requests for data.

Dr. Solet commented on how hospitalization data is developed on a state-by-state basis, the multiplicity of variables in data sets, and the need for standards developed by a national body, e.g., hospital discharge data in Washington does not contain race or any address data besides zip code, which makes geocoding difficult. The lack of race data also makes looking at health disparities difficult. States also use different statistical measures for small areas.

Along with providing centrally located standards and data, Dr. Solet called for supporting local health departments and others developing data and assessment indicators relevant to the community.

Dr. Solet reiterated his support and applauded the report?s comprehensive inventory and summary of the existing system. He acknowledged that real-world questions remain about implementation, suggested a framework for justifying data needs, and urged that the framework be strengthened. Dr. Solet suggested that next steps should focus on easily accessible, locally meaningful national data, and national support for local data development and data set integration.

E. RICHARD BROWN, PhD, Director, UCLA Center for Health Policy Research, Professor, UCLA School of Public Health, Los Angeles, California

Dr. Brown observed that he and his colleagues at UCLA spent a good part of their professional and research work over the last 14 years developing state and local data to inform health policy making in California. From that came an understanding of the value and limitations of existing federal surveys. He told of developing the California health interview survey, which reflects a large degree of collaboration and is viewed as a potential model for state health surveys. The survey (which began as a collaborative project of the UCLA Center for Health Policy Research, the California Department of Health Services and the Public Health Institute, a non-profit public health research and service agency) was needed to produce information relevant to both California and local health issues.

Extensive outreach gained input from potential users. Dr. Brown remarked that he learned a great deal about the information, topics and content people were really interested in, and their existing dissatisfactions with available data.

He explained that they had needed a sample that would achieve two purposes. They needed to produce estimates at county and sub-county levels. And they needed estimates for California's ethnically and racially extremely diverse population. To an extent, the objectives were competing. To generate county level estimates, the bulk of the sample had to focus on relatively small, predominantly white Anglo counties throughout the state. To generate estimates for ethnic and racial minorities the sample had to concentrate in relatively few counties. Both objectives were met by designing a sample that: (1) was large--over 55,000 households; and (2) could tap into counties throughout the state, drawing samples from each while collecting a sizeable sampling from those with large ethnic minority populations. A uniquely inclusive advisory process, involving more than 150 advisors who participated in the advisory board, shaped content.

He suggested their experience might serve as a useful model for other states and for national efforts to promote collaborative state and local surveys that help integrate population-based data collection across different levels of government jurisdictions.

Dr. Brown stated there was a need for the federal government to recognize that producing state and local population-based data for policy making and for health planning should be more than a state and local concern. It should be a shared responsibility that includes the federal government and substantial resources should be provided by government to promote collaboration, provide technical assistance and offer states matching funding for surveys.

PANEL 4. State and Local, Public and Private .

CHRISTINA BETHELL, PhD, MPH, MBA, The Foundation for Accountability, Portland, Oregon

For five years, Dr. Bethell has been identifying, from the consumer?s perspective, what needs to be known about the health care system; how to measure that in sound, feasible ways; and how to communicate it so they can make better health care decisions. She shared a consumer perspective, FACCT?s framework for assessing the range of quality health care information useful for collection, and promising data collection approaches.

FACCT's goal is to educate and mobilize consumers to: (1) understand the importance of health care and health care quality; (2) understand their role in the health care system; (3) demand and partner development of a system that produces better health; and (4) demand and partner in the collection of data necessary for them to make better health care decisions; (5) be active partners in requiring policy changes (e.g. information disclosure) that put them on the receiving end.

Dr. Bethell proposed that the reports position consumers as the key audience and ultimate source of data who need to be integrated in every way. FACCT has conducted over 100 focus groups and asked several hundred thousand consumers nationally about their health care and experiences and what they want to know. Consumers can play an active role in assessing and providing valid information about outcomes, processes and experience of health care. They are concerned about health care and interested in information collected and communicated in a reliable, clear way.

Dr. Bethell said she comes to this work humbled by the failure of the efforts of the last decade-and-a-half to assess health care in America, and to have that information be actionable and useful at the public level. Less than 25 percent of the insured population in America has any statistically relevant information about health care quality. This is for HMOs only, through the HEDIS system; for those who use most our health care resources and are most dependent on the system (people with special health care needs), data is even more limited. Little exists at the local level for actual use by adults with special health care needs?and almost nothing for children. What is available is often irrelevant or not actionable. However you measure--preventive care, clinical guidelines, or outcomes based--the health system is operating at 40 to 60 percent of optimal.

Dr. Bethell mentioned three elements FACCT identified to a consumer-based data and quality and health care data collection strategy: (1) an awareness campaign informing consumers about their role in the system and the importance of actively participating in data collection efforts; (2) useful information relevant to their lives; (3) making collected data available for decision support.

Consumers are discouraged about getting actionable, relevant, timely information about their health and health care without a mandatory system. Insurance companies and health care providers have not ?stepped up to the plate.? Employers are limited, and there is doubt that the government will be bold enough to collect information needed or make it available in timely, relevant ways.

Dr. Bethell described a framework FACCT developed with consumers around the question, What do you want to know about your health and health care when you make health care decisions? People basically want five things: (1) The basics. How to access care, be treated like a human being, and have an insurance system where you don't need a part-time job to get your bills paid. (2) Staying healthy. Is the system helping me stay healthy--is data about healthy behaviors collected and dispersed from the perspective of what can the health system do as a partner to help people stay healthy? (3) Living with illness. Is it helping me live as well as possible with an ongoing illness? (4) Getting better. If I get sick, how well does the system help me get better? Hospitalization data doesn?t address whether the quality of care was good. (5) Changing needs. If I have a terminal illness or become seriously ill in a way that will not be turned around, how well does the system help me with long-term care and end of life?

Dr. Bethell said these five categories form a three-dimensional framework. The other strata are for every life stage and alternative units of analysis. The cells created from this three-dimensional framework explore five things: (1) Outcomes--health status, quality of life, experience of illness, and caregiver burden. (2) Processes of care, basic clinical-guidelines-based care, and experience of care, which, she noted, encompasses the basis of quality health care--patient education, counseling, involvement in treatment decisions. (3) Surveyed measures--survey-based data. (4) Structural measures--data derived in other ways. (5) All the analytic variables you want to collect, so you understand variations according to social determinants, demographic data, etc. Dr. Bethell identified principles FACCT uses to ?swing through all the measures that could fill in this three-dimensional matrix:?

(1) Sustainability. FACCT believes if you focus on peoples? health in selecting information elements, you will collect a sustainable data set that will always be relevant. Base the selection on enduring consumer relevant information adaptable to anticipated changes in the health system.

(2) Flexibility. Dr. Bethell emphasized it is important to select measures and methods that allow for alternative administration modes; e.g., much of the data collected in national surveys is collected locally. Data elements are embedded within a larger framework and can be used in multiple ways to create different pictures of performance, health, and health disparities.

(3) Acceptability. One of the most difficult processes, Dr. Bethell observed, is balancing needs of policy makers, providers and consumers in the selection of data collection methods. Given the cost of data collection, trade offs are often significant. Her base line is ensuring the consumer rates high in terms of selection priorities. Dr. Bethell discussed minimizing black box methodologies; there cannot be too many steps between raw data and what consumers see if information collected through any national system is going to be relevant.

(4) Interpretability. Dr. Bethell described this as making sure the framework (data elements and how they integrate) explains priorities and supports communication.

(5) And finally, make sure data is actionable and discriminating. For FACCT, this has meant choosing quality measures and health information offering significant opportunity for improvement.

Dr. Bethell discussed FACCT?s online-based data collection and encouraged the Work Groups to consider it as a strategy that could be done nationally in collaboration with private sector efforts. The feasibility is there, the cost is one-twentieth of other methods, and there are viable sampling strategies, especially in partnership with the public sector and consumer organizations.

KATHY MCCAFFREY, BS, MA, RHIA, Vice President Health Care Data and Operations, California Association of Health Plans, Sacramento, California

Ms. McCaffrey, has been involved with electronic data collection as the director of medical records at the University of California, San Francisco, and managed health care databases for the Office of Statewide Health Planning and Development before working on the business side with the health plans. She commented on the role of health plans in the national collection of data; she identified reasons health plans have not been involved more and suggested how that could be changed. Ms. McCaffrey, who is working on a collaborative data initiative, Cal Links, also spoke about difficulties to be faced in implementation.

She noted that databases for health plans are secondary or tertiary, apart from the point of care, patients and providers. Health plans have been reluctant to provide access; they are proprietary, concerned about privacy issues, and contend with political issues.

Health plans legacy systems vary wildly. They collect a lot of data, but, depending upon their origins, it was collected with different intents. Plans originating with indemnity insurance had a particular set of customers. Models like Kaiser combined health care delivery with coverage. Plans originating during the managed care era were set up in still other ways. Look closely at their legacy systems, Ms. McCaffrey said, and you will find they are not alike; communications is quite different.

Ms. McCaffrey discussed practical issues faced in the health plans: patient identifiers and eligibility data. Health plans have very different product lines. How and what they cover, types of co-pays and deductibles, whether there is a subscriber identifier or unique number, relationship with provider networks--all are variables and proprietary. She observed that it could be argued that standardization is not always a good thing; that you want different opportunities to create new products. Undoubtedly, it has made eligibility difficult to decipher.

Ms. McCaffrey commented on how, in the hospital environment, the disparity between what was collected for a medical record database (which physicians respected, believed in and used) and the billing database (which they ignore) has drawn closer. Until about five years ago, the health plans did not pay attention to the clinical data. Realizing their responsibility for the codes on the claims and encounter forms has led to screening and validity and accuracy checks.

CAHP is working on defining the bill passed last year in California that requires the health plans to do mental health parity. She said that the plans have an interest in health information and an infrastructure and suggested that that is where the public/private connection might be.

Expressing concern about standards and conveying the importance of uniformity and commitment to consistency, Ms. McCaffrey stressed the importance of HIPAA. She added that the health plans welcome the role the government has taken, and that, through Cal Links, California health plans embraced that long ago. Implementation and realizing the cost of what it meant, however, has become a significant issue. CAHP has initiated a statewide effort with all of their health plans to address implementation issues and work together on all these projects

The biggest obstacle to accessing information, Ms. McCaffrey said, is the cost of data extraction. The health plans? legacy systems are complex and data extraction is expensive. Immunization is important to the health plans. Coordinating a project on immunization data collection, she realized the enormous cost and effort involved and the importance of being able to look at registries. There was no infrastructure to get HEDIS measures from the doctors? offices to the health plan; Ms. McCaffrey emphasized the value of getting data on the claims document.

Ms. McCaffrey recommended that the Committees involve the health plans? accreditation organizations. Involving them, she said, could help resolve difficulties with definitions. She suggested a way to coordinate collection with the health plans was to engage them in the CHIP projects, Medicaid, and Medicare--places where HIPAA and standardization will make it easier for them. She advised involving health plan leadership, and noted that legal counsels were concerned about confidentiality and could give advice on using the database. She reiterated that health plans could be a resource, even though public data collection is not their primary role.

JONATHAN E. FIELDING, MD, MPH, Director of Public Health and Health Officer, Los Angeles County Department of Health Services, Los Angeles, California

Dr. Fielding commended the Work Groups on a vision that highlights the challenges involved in developing an integrated, comprehensive system of population health statistics at all levels of government and below. He fully supported the reports? principles and major themes and singled out the importance of a very broad definition of health.

Dr. Fielding remarked that Los Angeles Department of Health Services, the second largest local health jurisdiction in the country, worked hard to improve population health data at the county level of 10 million people. (The service planning area is still more than a million people.) He considered it essential to get data at the subpopulation level, defined by race and ethnicity, social class, gender, age group, and sexual orientation.

He emphasized the importance of a flexible system to address emerging and changing health needs, adequate measures to ensure the confidentiality of data being collected, collaboration at all levels of government--particularly, collaboration with the private sector. Dr. Fielding affirmed the collection of data that has practical utility in informing both programmatic and policy decisions, noting otherwise, we have a lot of data and little information.

To put the challenges of Los Angeles in perspective, he described it as over 4,000 square miles, 10 million people, and no majority population. About 45 percent of the population is Latino, 33-34 percent white, 13 percent Asian Pacific Islander, nine percent African American. More than 50 countries and global regions are each represented by more than 5,000 county residents. Many are the world?s largest aggregation outside their own native borders. Los Angeles has the largest urban Native American population in the country, and extreme diversity between rich and poor. Some 85,000 people are homeless; many of them are children. An estimated 300,000 men and women are gay, lesbian or bisexual. There is a significant transgender population.

They had established an Office of Health Assessment and Epidemiology and, in addition to collecting vital statistics and communicable disease data, had started a biannual random digit dial survey, the Los Angeles County Health Survey, to track health behaviors, chronic non-infectious diseases and access and utilization of care.

Dr. Fielding said the most important thing he could contribute was a realization that, when we think about health, it is critical to think about multiple determinants. He said he was glad to see the Evan Stoddard model referenced, but added he was doubtful the collection system fully reflects that broad range of determinants. Housing data is seldom imported in health statistics; population-transportation data is omitted. Data on climate--and even matters clearly linked to health, in terms of mortality risk, (e.g., social connectedness)-- are excluded. The physical environment is also overlooked. Concerns about chromium 6 in water and small particles in the air, associated with substantial increases in respiratory related mortality in Los Angeles County, were issues Dr. Fielding mentioned with significant geographical gradients.

?We can't just look cross-sectionally,? Dr. Fielding emphasized. ?If we are concerned about health data, we have to think longitudinally.? The work of Barker, Gabarino and others show how prenatal influences have impacts in adulthood. He cited a recent study that showed small birth weight was associated with increased incidence of hypertension in adulthood. We have to look at more than current health, Dr. Fielding observed. We have to ask what relates to future health. We need more paired data sets and more longitudinal surveys that take full account of multiple exposures, starting with prenatal experiences and going forward.

He suggested collecting more information on the burden of illness. He described Los Angeles? first municipal study of disability-adjusted life years which gave a very different picture of health at the level of the communities. He emphasized that finding better ways to measure, not only quality adjusted life years, but health adjusted life years, is critical.

Noting the report indicated a lack of data on the uses of alternative medicine, Dr. Fielding observed there are many types of health care and data is needed on most. He noted given the statistics collected, ?we are not keeping pace. There are 88 cities in Los Angeles County; we have vital statistics, but almost no health data at that level. If we do not get data two orders of magnitude higher in terms of aggregation, we will not engage people in health issues and in making decisions.?

Dr. Fielding pointed out that local jurisdictions need better assistance. Most local health departments don't have the capacity to do the sophisticated analysis that often they would like to do. Some health departments are only one person. A number of places in California have very limited resources or technical assistance.

Combined Panel.

RITA MOYA, MS, President and CEO, National Health Foundation, Los Angeles, California

Ms. Moya shared the challenges, experiences and lessons learned as an end-user of health statistics and data. The National Health Foundation is a charitable organization that has worked for 27 years to improve the effectiveness and efficiency of health care and, more recently, the health of those with limited access to care or health information. NHF?s major focus is creation of Web accessible tools to enhance health-related decision making for organizations that work with uninsured and underserved populations.

Ms. Moya said most of what the Work Groups proposed is inspirational and affirms the direction and purpose with which NHF has approached difficult data sharing and health information technology projects. She cautioned that the Work Groups underestimate the importance and difficulty of creating the degree of public/private collaboration essential to realizing NHII.

NHF spent eight years and about $3 million attempting to utilize information technology tools to enhance health. Attempts in the early 1990s to create a health information network for all California providers, health plans and employers taught NHF that the challenges were not about the availability of technology, but about who would benefit and who would pay.

The Work Groups? proposals do an excellent job of outlining who benefits. For the proposals to have impact and serve as policy frameworks, more needs to be said about which entities have primary responsibilities for providing resources. How costs can be fairly distributed, could be the most important aspect of the report.

Noting the report addressed the need to enhance the quality of health services and turn the tide on the prevalence of medical errors, Ms. Moya observed that, as consumers, we all benefit from investment in health information systems that detect potential errors and assure diagnostic accuracy. She questioned whether those purchasing health benefits (consumers, employers and government) should help finance investments in improved information systems and decision support.

Ms. Moya proposed taking into account enhanced quality of health care and improved health status when calculating return on investment. She proposed distributing returns to all stakeholders (uninsured and underserved unable to invest would be the responsibility of government and philanthropy). Health plans, employers, providers of products and services including pharmaceutical companies, would all get a distributed portion of the investment and return. NHF believes issues about return on investment in health information technology will become high profile and contentious as the health insurance portability and accountability act of 1996 is implemented. Ms. Moya urged everyone to represent the consumer view in the coming debate.

A vigorous public debate on issues related to privacy is needed before HIPAA can contribute significantly to the vision of NHII. That debate is just beginning, Ms. Moya said, as the public comes to understand the risks and rewards associated with having personal health information available in formats that can be electronically transferred and shared. NHF believes the balanced public debate about the risk and rewards of exchanging personal health information in a commonly understood manner among trusted entities needs more visibility. NHF collaborates with consumer groups, practitioners, educators, payors, policy makers and philanthropies in the Vallejo initiative, which aims to provide everyone in a community access to information, services and resources needed to achieve optimal health.

Ms. Moya discussed examples of NHF and partner organizations public/private collaborations developing Web-based health planning and decision support tools. These collaborative efforts integrate commercial software and public and private databases to create public domain applications. The tools are developed at a common site, Health Query. The rationale that solicited philanthropic support was the need to develop tools to address health planning disparities. Health Query creates access to free decision support tools that commercial entities would not develop because the market is too small and fragmented and the tools require geographic customization.

Many data sources allow for zip-code-level reporting and mapping and many combine public and private data sources to create a blended data source. All sources are clearly identified and a how-to-use section warns users about referencing Health Query reports without citing the data sources. The key metric that guides NHF?s work is whether tools are used for making practical decisions regarding where to focus health resources, conduct research to underserved populations and advocate needed services. These are the needs identified for programs NHF and other community-based organizations provide.

Commercial contributors to Health Query become involved to address the needs of organizations that serve the uninsured and underserved populations on the have-not side of the digital divide. The State of California is involved because of its focus on making data available and useful to as many end-users as possible, in an easy-to-understand format. Health Query is being developed and piloted in Los Angeles with a large end-user group that includes over 250 public health officials, health planners, community based organizations, community clinics, provider organizations and academic researchers.

NHF believes providing an experimental environment for public entities is a key component of supporting innovation. Years of building relationships of trust and mutual respect, taught that public/private partnerships could not be casual references, proposals to funders, or policy recommendations. Public private partnering requires time and resources. Seed funds seldom are earmarked for collaborative efforts. The good faith of everyone involved makes them possible.

Ms. Moya advised that the cost of change is significant, and public and private funding will be needed to implement the Work Groups? proposals through the early stages of reengineering, collection, transfer and use of health information and data. If the public and non-profit sectors are to play a major role in this change process, resources must be identified. Most commercial sector partners are not interested in funding the process; their focus is on providing solutions.

Experimentation is needed before commercially viable solutions can be marketed, Ms. Moya counseled. Both Work Groups are silent on a source for innovation capital. Based on NHF's early efforts, Ms. Moya recommended that public and private sources of funding be made available and the role of philanthropic support in creating and sustaining public/private partnerships be encouraged as a key to change and innovation.

PHILIP R. LEE, MD, Consultant Professor in Human Biology Program, Stanford University, Stanford, California

Dr. Lee noted that the interim reports, which he called excellent and a major step forward, built on work done in HHS dating back to the foundation of NCHS. He remarked that the reports do not reflect the progress made within the Department and other federal agencies. Including a community health dimension, he said was a major conceptual milestone toward integrating population health strategies into the NHII. He noted that barriers are well described and outlined and agreed they are not primarily technological in nature, but legal, societal, organizational and cultural.

Dr. Lee spoke about the issue of collaboration. He referred to the Public Health Data Projects and Systems review that identified over 200 different data systems in HHS related to health or health care, and he recommended describing the 2001 Health Informatics Initiative in the report. He emphasized three areas of importance: (1) funding of state level projects that apply new informatics and statistical techniques to model population health dynamics; (2) linking HHS information; (3) the creation of new informatics methods to assess discrimination.

Dr. Lee stated that the current system is clearly dysfunctional within the Department and the separate agencies. People on the Hill tell him they are ?up there competing against each other.? He pointed out that doesn't exactly solve the problems.

He emphasized the need for: (1) leadership around the issue of collaboration; (2) formal interagency agreements, that include personnel, budget, equipment and space assigned to collaborative tasks; (3) accountability--unless we have separate silos of categorical reporting systems, we can't have accountability to the political body, viz., Congress.

Dr Lee noted that less formal collaborative networks are being established. One contributing factor is the Healthy People process, which fosters sharing of information and collaboration around common problems and goals. He emphasized that collaboration is also needed with state and local government. Dr Lee discussed recommendations for the federal government around leadership, funding, administration and management. He proposed a Health Information and Communications for America Initiative, a $14 billion investment and a ten-year initiative, that would serve to build out NHII. He called for a highly competent staff in a Health Information and Communications Office in the White House, with the Secretary or the Office of the Secretary in HHS responsible for overall management. Some $675 million in available funds over a ten-year period would ensure all facets of the Department collaborate and work together. A new Health Information Communication and Data Agency would serve as the focal point for day-to-day management of the development of NHII; strengthen capacity for data policy and data development; and increase analytic capacities and information dissemination channels, enhancing the effectiveness of communications. The infrastructure would be formed by combining NCHS with major general purpose survey activities currently conducted by a variety of the operating agencies or divisions. Dr. Lee suggested that probably $5 billion would be needed in the operating divisions over a ten-year period. Dr. Lee described this as a collaborative venture similar to the Hill-Burton program with the federal government and the states, initially utilizing planning grants and then funded through the states for both public and non-profit institutions at the local level.

Dr. Lee said he would like to see more history in the reports and recognition of where the leadership has come from and how much has been accomplished. He noted the next generation Internet, mandated by legislation, is in development. Communications technologies are at the third generation, developing broad-band widths and wireless communication with the high performance Internet. He said some sense of this belongs in the conceptual framework

JAMES ALLEN CROUCH, MPH, Executive Director California Rural Indian Health Board, Sacramento, California

The California Rural Indian Health Board is a consortium of tribally operated health programs, funded primarily by the Federal Indian Health Service. CRIB represents 12 tribal health programs in California at 56 provider sites and services over 30,000 people.

Mr. Crouch suggested CRIB is not unlike a virtual organization. There are more than 35 routers in the system. They service and maintain over 200 e-mail addresses operating over the FIHS established backbone, part of the FTS system. He said the virtual reality of the Internet and electronic information systems are ideally suited for the Indian community: a small, isolated population dispersed over broad geography.

The Work Groups? view of the information that might be captured is what CRIB has been seeking to improve services to patients. The report?s focus on having information at the individual, provider and community levels is right. The question is how to integrate that information.

Mr. Crouch described linking studies relevant to the Work Groups? view of community and individual health record information. He noted that, for 30 years, there has been about a 300 percent undercount of Indian ethnicity in the database. Linking work with the IHS patient registration database (which has the only validated information on Indian status and other identifiers to link studies) also found about a 300 percent undercount of Indian ethnicity in the Medicaid paid claims file. Connecting known identifiers for Indians with other registries (e.g., cancer and diabetes) will be useful in replicating this in other state databases.

The IHS has a domestic discretionary program without a defined benefit package. Over the years, the level of funding available to support that undefined benefit has eroded. CRIB recently completed their first attempt at actuarial-based resource planning and distribution, The Level of Need Funded for the Indian Health Service. The national study found that IHS, with a $2.4 billion budget, currently spends about $1.8 billion on the equivalent of the Federal Employees Benefit Package, for the Indian population dependent on the service--a $1.2 billion short fall. The agency operates on 60 percent of its needed funds. An NHII infrastructure that tracked issues of payment and ethnicity, Mr. Crouch noted, would able CRIB to communicate with Congress about the under funding, and compare health status issues around access to health care in the dominant society. Standards to foster interoperability and communication between data systems are essential, he said, and the federal government has a vital role in setting them.

Mr. Crouch concurred with the significance of the three dimensions of health care data and thinking globally. He suggested that: (1) Personal data sections should include information on tribal identification. (2) HIS should be understood not only as a payor of care, but as a system of care reviewed and identifiable in the system. (3) One reason to hope for better information systems and better health status data is to direct scarce resources. Facilitating billing, a critical aspect of any health care management system, is among the failings of the IHS RPMS system.

He noted IHS? broad perspective on public health and their mission to elevate the health status of the Indian community is compatible with the ultimate goals of the Work Groups? proposal, and encouraged them to think about the HIS as a test pad for this new vision.

Discussion

Dr. Friedman thanked the presenters for an excellent and helpful series of presentations.

Dr. Lee said he talked a lot about technology, but that it was just as important for the report to reflect the dynamic civic engagement movement in the health field, thousands of communities and organizations. He noted a great deal was happening at the local level, much of it funded by community foundations. He acknowledged the reports mentioned this, but recommended it be addressed in more detail and suggested the Work Groups might hold a hearing.

Dr. Lee clarified that the initiative he proposed would be the mechanism within the federal government to develop the NHII with White House leadership; coordination and management; direction at the Secretary level in the Department; a new agency; significantly greater resources; broader role in policy, technical development and coordination. One problem, he said, is this fragmentation within the Department that impacts every state and community trying to get a coherent picture. He said it would be the road map for NHII.

Dr. Newacheck advocated paying better attention to how communities collect and disseminate information on health statistics and health of the population. He said he had not heard that perspective much at these hearings.

Dr. Lee observed that what they called health statistics involved a concern about how a disabled person got on a bus to get to the clinic and if they had access. He said it was a very different view of health statistics that we need to hear.

Dr. Bethell commented that methodologies and focus for involving consumer perspective vary at the development of information, data collection, and dissemination stages. Asking what people need to focus on involves consumers in the first stage. The concern at the next stage is getting information directly from consumers. In the dissemination stage, consumers are already looking on the Internet or at the point of service; engage them by going on the Internet or to the communities.

Dr. Lee mentioned Don Barr?s Stanford studies on consumer evaluation of provider performance, where evaluations of the physician seemed to be more a reflection of the receptionist's attitude than the transaction in the office or outcome. Dr. Bethell responded that that is why ?you don't ask general questions like, ?Are you satisfied with your health care?? Ask what is actually happening. ?We ask them to vote, spend $100 on health information--What do you really want to see?? Once they realize they can actually find out whether they get the care needed and whether the outcomes occur, that always wins.?

Dr. Starfield noted that Dr. Bethell said 42 percent of the population believe they have been a victim of medical error; he asked how that fit into or modified a framework. She explained that, for each component, they look at outcomes process and experience of care. They do not define process in terms of what was done that shouldn't be done, but was what should have been done, actually done. Part of the problem, she explained, is that ?we try to be evidence-based and link the measures to something,? and the evidence-base is weak in the area of inappropriate care. ?We know diabetics should have retinal eye exams; we don't know if 10 visits a year is too much. And we don't know who should provide it, so we steer away from that. Those things can be collected analytically and provide a lot of rich information. Dr. Bethell noted you can collect data in a way that simultaneously provides information for accountability, policy making and research.

Dr. Sondik observed he has walked away from serious discussions about process versus outcomes in quality, shaking his head at trade offs people pose. He pointed out that the overall framework--both the health statistics and NHII infrastructure sides--needed to emphasize both health status and health outcomes. Then there needs to be, careful tracking of processes going on in the health care system. He described it as a combination of surveillance, monitoring, and research. Research has not come up much, he noted, adding it really is the foundation.

Privacy, Dr. Sondik noted, came up on every panel. ?We haven't seen the debate yet, but it is coming.? He expressed concern that a national assessment of privacy might put the lid on sharing of information crucial to the Work Groups? vision.

Ms. Moya asked, what are the rewards when we can capture community-level information and tie it with other data sources related to environmental factors, communicable disease? She challenged the Committee: How will you inform conversations about the risk and reward of sharing personal health information in an electronic environment?

Dr. Lee pointed out that everyone was talking about the public or community health system. He noted a much better record there than on the medical care side. People have to understand there is greater assurance of privacy protection with built-in technologies that ensure protection or minimize risk of unauthorized disclosure, without paralyzing you with restrictions. In Minnesota, he reported, the legislature passed a bill that would have prevented the Mayo Clinic from doing research on the clinic?s records that they have been doing for 75 years. The state medical society and the health department helped them get a reversal and reasonable protections so research goes on. Dr. Lee cautioned research could be crippled with unintended restrictions.

Mr. Crouch said he was concerned that backlash in the dominant society would freeze up the potential of the transition. He observed that the Indian community is primarily a prima facie community. ?We live in transparency, known to each other. Only in the dominant society do you have this loss of community and interrelationship--that privacy, in the sense some people are so tenacious about, even becomes doable.? He said America needs to rebuild community so a sense of trust reduces fear of information flow. ?We need to be more honest about our mutual humanity.? He worried that Congress or state legislators might restrict the use and sharing of information in a way that the real gift of the technology could be lost.

Dr. Sondik remarked that Dr. Middleton spoke about property rights and said that concept highlighted that, when any of us interact with the health care system, there is a notion that our experience is part of a public good. ?We want the public good and, at the same time, we want our own contribution protected.?

Dr. Sondik said he did not hear training mentioned. He identified a need for training that enabled people to break out of this cocoon of defining health in such narrow ways and look at the determinants of health, so they come up with viable solutions. Dr. Lee noted that Ms. Cain?s paper addressed illiteracy and the significant part of the population that cannot access the system. A bigger investment has been made in linking Internet to schools than the health sector. He said training people to use the system is a bigger job than he imagined. The report should address this.

Mr. Rodrian remarked that, 20 years ago, Marshall McLuen talked about the coming electronic age and the global village. ?We are getting there,? he noted. In a global village, everyone knows what everyone else did last night. He added that is something no one is comfortable with. ?We have to become more comfortable with it, though, because it is happening. Property rights to data about your health status bother me.? He suggested the need for a balanced approach where private things are kept private to the extent possible and those that use them inappropriately are punished.

Dr. Friedman thanked the presenters for helping to move everyone forward on both interim reports. The hearing was adjourned at 4:45 p.m.

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

_______________________________________
John R. Lumpkin, M.D., M.P.H.
Chair Date

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

____________________________________________
Daniel J. Friedman, Ph.D
Chair Date

Minutes of the October 30, 2000 NCVHS Joint Hearings of the Workgroup on National Health Information Infrastructure and the Workgroup on Health Statistics for the 21st Century

Public Health Service

Meeting of Work Groups on:

National Health Information Infrastructure

and

Health Statistics for the 21st Century

October 30, 2000

- Minutes -

Committee and Work Groups members:

Staff and Liaisons:

Others:

EXECUTIVE SUMMARY

PANEL 1:

PANEL 2:

PANEL 3: State and Local, Public and Private

PANEL 4: State and Local, Public and Private

COMBINED PANEL:

DETAILED HEARING SUMMARY

October 30, 2000

PANEL 1

Discussion

PANEL 2

Discussion

Overview of Interim Report: Shaping a Vision for 21st Century Health Statistics.

Dr. Friedman

PANEL 3. State and Local, Public and Private.

PANEL 4. State and Local, Public and Private .

Combined Panel.

Discussion

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Health Statistics for the 21^st Century