The Committee on Regional Health Data Networks wishes to acknowledge the assistance that they and the study staff received from many individuals and organizations during this study. Among these are a large number of individuals and organizations who met with members of the committee and staff during site visits and provided valuable insight into both the benefits to be gained and the obstacles to current efforts to establish and operate various kinds of health database organizations and regional networks.

The committee benefited from presentations by guests invited to three of its meetings. In March 1992 John P. Fanning, LL.B., Office of Health Policy and Evaluation, Office of the Assistant Secretary of Health, Department of Health and Human Services, spoke to the committee about privacy issues related to the disclosure of data from various kinds of databases. Lance J. Hoffman, Ph.D., Professor, Department of Electrical Engineering and Computer Science, George Washington University, gave an evening presentation on issues of security and inferential identification. In June 1992 the committee was joined by H. Jefferson Smith, Ph.D., of Georgetown University School of Business Administration; William Goss of the Health Care Management Program at General Electric; Robin Stults, R.R.A., of the University of Maryland Medical System; and Edward J. Hinman, M.D., of Lincoln National. All these participants discussed current practices in the use and protection of health information from their various perspectives (employers, providers, computer security experts, and insurers and third-party payers). Bert Tobin of Benton International also presented a working model of an information repository. At both this meeting and the next meeting in October 1992, Robert Belair, J.D., explored with the committee a range of legal and regulatory aspects of privacy and confidentiality. At the October meeting, the committee also heard from John Baker, Senior Vice President of Equifax, Inc., in Atlanta, Georgia, regarding the issues of privacy, confidentiality, and access in other databases.

The committee also wishes to acknowledge the organizations, institutions, and groups, listed in Appendix A, that participated in its five site visits. A considerable debt of gratitude is owed to the many individuals, too numerous to name here, who because of their association with those organizations gave the committee valuable insights into the many issues of use, disclosure, and privacy that make up the heart of the committee's report.

The study would not have been possible without the support of the John A. Hartford Foundation, and the consistent and enthusiastic encouragement from Richard Sharpe, the Foundation's Program Officer, is hereby acknowledged. Generous assistance was also provided by the American Health Information Management Association, Electronic Data Systems Corporation, and Science Applications International Corporation.

This study benefited from both previous and current IOM studies, including work by the Committee on Improving the Patient Record in Response to Increasing Functional Requirements and Technological Advances, the Committee on Employer-based Health Benefits, and the Committee on Assessing Genetic Risks. The committee is particularly appreciative of the assistance from Marilyn J. Field, Ph.D., and Jane Fullarton, M.P.H., the project directors for the latter two studies, who provided cogent presentations on privacy and confidentiality matters at one committee meeting.

Finally, and in particular, the committee would like to express its gratitude to the IOM staff who facilitated the work of the committee. We are grateful for the secretarial and logistical support provided by Helen Rogers and Donald Tiller and for the assistance during the report review and preparation stage of Claudia Carl and Michael Edington of the IOM's Office of Reports and Information; the steady help of Nina Spruill, Financial Associate for the Division of Health Care Services, was also greatly appreciated. Krys Krystynak, while a participant in the federal 1992 SES Candidate Development Program, spent some time at the IOM assisting on the study. Finally, the committee acknowledges its considerable debt to Karl Yordy, Director of the Division of Health Care Services through September 1993, for his unflagging guidance and support during this project.