Appendixes



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--> A Fact-Finding for the Committee on Regional Health Data Networks This appendix briefly documents the organizations and individuals who contributed to the committee's efforts at data collection and fact-finding during the first parts of the project.Listed below are participants and guests at committee meetings, including experts who gave special briefings to the committee. Following that is material on the committee's site visits. PARTICIPANTS AND GUESTS AT COMMITTEE MEETINGS Expert Presentations and Briefings John A. Baker, Senior Vice President, Equifax, Inc. Robert Belair, J.D., formerly Kirkpatrick and Lockhart; currently Mullenholz and Brimsek John P. Fanning, LL.B., OHPE/OASH/Department of Health and Human Services Marilyn J. Field, Ph.D., Senior Program Officer, Institute of Medicine Jane Fullarton, Senior Program Officer, Institute of Medicine William Goss, Health Care Management Program, General Electric Edward J. Hinman, M.D., Lincoln National H. Jefferson Smith, Ph.D., Georgetown University School of Business Administration Robin Stults, R.R.A., University of Maryland Medical System Bert Tobin, Benton International

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--> Invited Guests and Observers Lois Alexander, Special Assistant to the Commissioner, Social Security Administration Leslie Alexandre, Government Affairs Representative for Health Policy, Office of Government Affairs, Electronic Data Systems Marjory Blumenthal, Ph.D., Staff Director, Computer Science and Telecommunications Board, Committee on Physical Sciences, Mathematics, and Applications, National Research Council Moses Boyd, Committee on Commerce, Science, and Transportation, U.S. Senate Paula Bruening, J.D., Office of Technology Assessment Mark Epstein, Executive Director, National Association of Health Data Organizations J. Michael Fitzmaurice, Ph.D., Director, Office of Science and Data Development, Agency for Health Care Policy and Research Kathleen Frawley, R.R.A., J.D., Director, Washington, D.C., Office, American Health Information Management Association Robert Gellman, J.D., Chief Counsel, Subcommittee on Government Information, Justice, and Agriculture, Committee on Government Operations, U.S. House of Representatives Michael Hash, Subcommittee on Health and the Environment, Committee on Energy and Commerce, U.S. House of Representatives Stephen Jencks, M.D., Health Standards and Quality Bureau, Health Care Financing Administration Judith Miller Jones, Director, National Health Policy Forum, George Washington University Charles N. Kahn III, J.D., Committee on Ways and Means, U.S. House of Representatives Rene C. Kosloff, Ph.D., Vice President, Kunitz and Associates, Inc. Selma Kunitz, Ph.D., President, Kunitz and Associates, Inc. Donald A. B. Lindberg, M.D., Director, National Library of Medicine, National Institutes of Health Richard S. Sharpe, Program Officer, The John A. Hartford Foundation Nicole Simmons, Office of Legislation and Policy, Health Care Financing Administration Joan Turek-Brezina, Ph.D., Director of Technical and Computer Support, Office of the Assistant Secretary for Planning and Evaluation, Department of Health and Human Services Institute of Medicine Staff Enriqueta Bond, Ph.D., Executive Officer Jane Durch, Staff Officer

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--> Kenneth I. Shine, M.D., President Karl D. Yordy, M.P.A., Director, Division of Health Care Services SITE VISITS This section gives the location and dates of the committee's site visits and lists the organizations or groups of individuals with whom the committee met. Memphis, Tennessee: July 26-28, 1992 Baptist Memorial Hospital Blue Cross and Blue Shield of Memphis International Paper Company Memphis and Shelby County Medical Society Memphis Business Group on Health, Confidentiality Task Force Memphis Business Group on Health, Inc. Methodist Health Systems Regional Medical Center (County Medical Center) Sharpe Manufacturing Company, Personnel Department Cleveland, Ohio: August 2-4, 1992 Academy of Medicine Blue Cross/Blue Shield of Cleveland Board of County Commissioners Centerior Energy The Cleveland Clinic Foundation Cleveland Health Quality Choice Council on Small Enterprises Greater Cleveland Hospital Association Health Action Council Lubrizol Corporation University Hospitals of Cleveland Des Moines, Iowa: August 26-28, 1992 Blue Cross and Blue Shield of Iowa Health Policy Corporation of Iowa Iowa Bankers Insurance Service Iowa Hospital Association Iowa Medical Society Iowa Methodist Medical Center Iowa State Education Association

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--> Pioneer Hi-Bred, Human Resources Department Principal Financial Group Practicing Physicians Seattle, Washington: September 9-11, 1992 The Exchange System Foundation for Health Care Quality (FHCQ) Health Care Purchasers Association Group Health of Puget Sound Overlake Hospital Medical Center, Employees State of Washington, Department of Health State of Washington, Office of the Governor University of Washington, Faculty Washington State Health Care Authority Washington State Hospital Association and Task Force on Administrative Reform Washington State Medical Association Weyerhaeuser Company, Health Management Services Rochester and Albany, New York: September 21-23, 1992 Albany Albany Medical Society Hospital Association of New York State New York State Department of Health (NYDOH) Rochester Consumer Representatives Integrated Mental Health Services Physicians Network Rochester Health Information Group Basic Findings of Site Visits During the site visits, IOM committee members and staff were able to learn in some detail about current and planned initiatives under the auspices of numerous groups as well as about a great variety of issues, concerns, and suggestions from these groups and a broad cross-section of people in urban and rural areas. The site visits included three sites where CHMISs were being devel-

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--> oped (both state-mandate and business coalition models in Washington State, Des Moines, and Memphis) and three where they are not (Rochester, Albany, and Cleveland). Questions raised frequently by hosts were as follows: Who would run and administer such a database, and who would own the data? What would this effort cost and who would finance it, in terms of both fixed costs (for example, for computer equipment) and variable costs (over the short and long run, such as staff/personnel costs for data entry)? What is in it for me or what will this do to me (particularly from physicians in private practice and from employers with national interests whose health policies were set at a corporate level somewhere else)? Who would have access to patient-identified and provider-specific data? Interestingly, not everyone was worried about privacy of patient data, believing either that such information could be protected (so the question was moot) or that not much harm would come from judicious release to, for example, employers). Consumers understood the potential value of such databases, but they were also worried about access to patient-level data, especially concerning insurability. Could analyses about quality of care realistically be done (in contrast to analyses of cost or charges data or analyses of utilization patterns)? The visiting committee members, in turn, tried to learn as much as possible about ways—in practice or in theory—groups in these various areas meant to realize the benefits of such databases, to minimize or prevent the exacerbation of current risks to the confidentiality of patient-level data, to improve database security, and to promote appropriate data collection, valid analyses, and useful dissemination of data.