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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
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
Kenneth I. Shine, M.D., President
Karl D. Yordy, M.P.A., Director, Division of Health Care Services
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
The Cleveland Clinic Foundation
Cleveland Health Quality Choice
Council on Small Enterprises
Greater Cleveland Hospital Association
Health Action Council
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
Pioneer Hi-Bred, Human Resources Department
Principal Financial Group
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 Medical Society
Hospital Association of New York State
New York State Department of Health (NYDOH)
Integrated Mental Health Services
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-
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.