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Health Data in the Information Age: Use, Disclosure, and Privacy (1994)

Chapter: A Fact-Finding for the Committee on Regional Health Data Networks

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Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
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Appendixes

Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
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Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
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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

Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×

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

Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×

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

Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×

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-

Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×

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:

  1. Who would run and administer such a database, and who would own the data?
  2. 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)?
  3. 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)?
  4. 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.
  5. 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.

Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 225
Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 226
Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 227
Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 228
Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 229
Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 230
Suggested Citation:"A Fact-Finding for the Committee on Regional Health Data Networks." Institute of Medicine. 1994. Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press. doi: 10.17226/2312.
×
Page 231
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Health Data in the Information Age: Use, Disclosure, and Privacy Get This Book
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Regional health care databases are being established around the country with the goal of providing timely and useful information to policymakers, physicians, and patients. But their emergence is raising important and sometimes controversial questions about the collection, quality, and appropriate use of health care data.

Based on experience with databases now in operation and in development, Health Data in the Information Age provides a clear set of guidelines and principles for exploiting the potential benefits of aggregated health data--without jeopardizing confidentiality.

A panel of experts identifies characteristics of emerging health database organizations (HDOs). The committee explores how HDOs can maintain the quality of their data, what policies and practices they should adopt, how they can prepare for linkages with computer-based patient records, and how diverse groups from researchers to health care administrators might use aggregated data.

Health Data in the Information Age offers frank analysis and guidelines that will be invaluable to anyone interested in the operation of health care databases.

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