June 2000

Grant Results

SUMMARY

Health Systems Research (now Altarum), Washington, sponsored a national conference entitled "Protecting the Confidentiality of Patient Information in a Rapidly Changing Health Care System: A National Conference" on January 14, 1998, in Washington.

Health Systems Research is an organization that has established itself as a neutral convener around many controversial issues and that serves as a meeting coordinator for the federal Agency for Health Care Policy and Research.

Key Results
The 150 attendees included federal and state policy makers, researchers, and analysts, as well as representatives from consumer groups and managed care organizations.

Project staff commissioned five papers for the conference that:

  • Highlighted emerging privacy issues — including the challenges presented by genetic testing.
  • Promoted discussion of appropriate measures that would balance patient privacy with legitimate use of medical information.

Several key issues were raised and discussed during the conference. They were:

  • There is a need to develop a balanced approach to the protection of patient privacy.
  • A combination of potential technological and legal solutions does exist.
  • Multiple perspectives drive this complex debate.
  • Genetic information will pose greater challenges.
  • Congressional interest in this issue will continue.

In 1998 Health Systems Research published the proceedings, including the five commissioned papers, in one volume, Protecting the Confidentiality of Patient Information in a Rapidly Changing Health Care System: Summary of a National Conference.

Funding
The Robert Wood Johnson Foundation (RWJF) supported this conference with a grant of $118,627 between July 1997 and August 1998.

 See Grant Detail & Contact Information
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THE PROJECT

Since the demise of national health reform in 1994, the health care delivery system has undergone dramatic changes, including (1) rapid growth in enrollment of individuals into managed care plans and integrated provider networks and (2) significant advances in information technologies.

These developments are interdependent because rapid growth in enrollment has been facilitated by the technological advances that enable health plans to assemble and make use of increasingly larger databases. While the use of sophisticated information systems to manage and access patients' care can be highly effective and efficient, it also means that more people could have access to medical records and sensitive patient information than ever before.

Issues associated with the confidentiality of patient information are thus rapidly becoming more urgent and more complex. Without sufficient consideration of confidentiality issues, efforts to standardize patient records or streamline other administrative aspects of the current health care system could have unintended adverse consequences for the privacy of medical records.

This grant from RWJF supported a national conference on confidentiality convened by Health Systems Research (HSR), an organization that has established itself as a neutral convener around many controversial issues and that serves as a meeting coordinator for the federal Agency for Health Care Policy and Research (AHCPR).

The conference, "Protecting the Confidentiality of Patient Information in a Rapidly Changing Health Care System: A National Conference," took place on January 14, 1998, in Washington, D.C. It aimed to examine issues related to patient confidentiality and to consider ways of crafting solutions to identified problems that would appropriately balance differing concerns. Five papers were commissioned for presentation at the conference:

  • Paul D. Clayton, Columbia Presbyterian Medical Center: "Technical Measures for Protecting the Confidentiality of Computer-Based Health Records"
  • Janlori Goldman, Health Privacy Project Institute for Health Care Research and Policy: "Privacy and Health Information: A Legal Framework"
  • Janlori Goldman, Health Privacy Project Institute for Health Care Research and Policy: "Protecting Privacy to Improve Health Care"
  • Bernard Lo, University of California, San Francisco: "Confidentiality of Patient Information in a Changing Health Care System"
  • "Security and Confidentiality of Patient Information: A Framework for Managed Care," prepared by the National Committee for Quality Assurance and the Joint Commission on Accreditation of Healthcare Organizations

A list of presenters appears in the Appendix. The 150 attendees included federal and state policymakers, researchers, and representatives of consumer groups, managed care organizations, and health care providers. Among the organizations represented were the National Governors Association, Harvard Pilgrim Health Care and the Congressional Quarterly. The cosponsors of the conference were the Joint Commission on Accreditation of Healthcare Organizations, the National Committee for Quality Assurance, Families USA, and the AHCPR.

Key issues raised and discussed during the conference included the following:

  • There is a need to develop a balanced approach to the protection of patient privacy. Accessible, accurate patient information is valuable for legitimate uses such as public health initiatives and medical research; overly stringent confidentiality protections might hinder such uses. The challenge is to develop an approach that carefully balances privacy protections with access to medical information for appropriate uses.
  • A combination of potential technological and legal solutions does exist. While no system can provide absolute assurance of confidentiality, there are many technical remedies that can be used to restrict access to medical data without hampering researchers' access to nonidentifiable data. Incentives should be provided to encourage investments in privacy-ensuring technologies.
  • Multiple perspectives drive this complex debate. Surveys show that the public is ambivalent and unclear about privacy issues; lack of informed public debate makes it difficult to build consensus on these issues. Patients with socially stigmatized conditions such as AIDS and mental illness are most sensitive about privacy and would benefit greatly from heightened privacy. There are, however, valid reasons for gathering and using medical information, such as improving health care practice, protecting the public's health, advancing research, and making information systems more reliable.
  • Genetic information will pose greater challenges. Genetic research may significantly augment science and health care, but it also has significant potential for misuse and misinterpretation. Genetic information affects the privacy of the entire family, not just the individual, and it is unclear what impact it will have if access to such information is granted to employers or health and life insurers.
  • Congressional interest in this issue will continue. Several members of the 105th Congress (1997–98) explored legislative remedies meant to provide stronger protections while establishing standards that allow access to patient information for legitimate purposes. One pending measure would have guaranteed individuals access to their records while barring release of records without patient consent. Another would have expanded existing privacy standards to regulate the use of identifiable information by researchers. Although confidentiality and quality improvement issues are linked, congressional staffers predict such issues will be addressed as separate pieces of legislation, according to the grantee.

Communications

Following the conference, HSR published the proceedings, including the five commissioned papers, in one volume, Protecting the Confidentiality of Patient Information in a Rapidly Changing Health Care System: Summary of a National Conference. Copies were distributed to the 150 conference participants, and 250 copies were given to each of the four meeting cosponsors. In addition, 170 copies were sent to the Alliance for Health Reform for distribution to policymakers who attended a briefing on this issue sponsored by that organization.

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AFTER THE GRANT

There has been no significant activity related to this grant following the conclusion of the conference and the distribution of the conference summary.

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GRANT DETAILS & CONTACT INFORMATION

Project

National Conference on Privacy and Confidentiality and the Changing Health Care Market

Grantee

Health Systems Research, Inc. (Washington,  DC)

  • Amount: $ 118,627
    Dates: July 1997 to August 1998
    ID#:  031508

Contact

Lawrence Bartlett, Ph.D.
(202) 828-5100
lbartlett@HSRnet.com

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APPENDICES


Appendix 1

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Meeting Presenters

Lawrence Bartlett, Ph.D.
Health Systems Research, Inc.

Kimberly Calder, M.P.S.
National Alliance of Breast Cancer Organizations

Paul D. Clayton, Ph.D.
Columbia Presbyterian Medical Center

Pamela S. Dickson
The Robert Wood Johnson Foundation

Sharon King Donohue, Esquire
National Committee for Quality Assurance

John M. Eisenberg, M.D.
Agency for Health Care Policy and Research

J. Michael Fitzmaurice, Ph.D.
Agency for Health Care Policy and Research

Janlori Goldman, J.D.
Georgetown University Medical School

Alfonso Guida Jr.
National Mental Health Association

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Books and Reports

Protecting the Confidentiality of Patient Information in a Rapidly Changing Health Care System: Summary of a National Conference. Washington, D.C.: Health Systems Research, 1998. Over 1,300 copies distributed. Articles contained in the publication:

  • Clayton PD. "Technical Measures for Protecting the Confidentiality of Computer-based Health Records," Appendix D.
  • Goldman J. "Privacy and Health Information: A Legal Framework," Appendix E.
  • Goldman J. "Protecting Privacy to Improve Health Care," Appendix C.
  • Lo B. "Confidentiality of Patient Information in a Changing Health Care System," Appendix F.
  • "Security and Confidentiality of Patient Information: A Framework for Managed Care," prepared by the National Committee for Quality Assurance and the Joint Commission on Accreditation of Healthcare Organizations, Appendix G.

Sponsored Conferences

"Protecting the Confidentiality of Patient Information in a Rapidly Changing Health Care System: A National Conference," January 14, 1998, Washington, D.C. Attended by 150 individuals from federal and state government and private institutions. It included the following sessions:

  • Lewis G. Sandy, the Robert Wood Johnson Foundation, "Welcome and Overview of the Conference."
  • John M. Eisenberg, Agency for Health Care Policy Research, "Keynote Address."
  • Paul D. Clayton, Columbia Presbyterian Medical Center, and Janlori Goldman, Georgetown University Medical School, "The Lay of the Land."
  • Panel discussion, "Finding the Proper Balance."
  • Kathy L. Hudson, National Human Genome Research Institute, "The 21st Century Challenge."
  • Panel discussion, "Perspectives on Patient Confidentiality."
  • Judith Y. Whang, the Robert Wood Johnson Foundation, "Closing Remarks."

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Report prepared by: David Gray
Reviewed by: Robert Narus
Reviewed by: Marian Bass
Program Officer: Judith Y. Whang

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