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Protecting Data Privacy in Health Services Research APPENDIX E Biographical Sketches BERNARD LO (Chair), is professor of medicine and director of the Program in Medical Ethics at the University of California, San Francisco. He chairs the End of Life Committee convened by the American College of Physicians - American Society of Internal Medicine, which is developing consensus recommendations for clinical care near the end of life. He directs the national coordinating office for the Initiative to Strengthen the Patient - Provider Relationship in a Changing Health Care Environment, funded by the Robert Wood Johnson Foundation. He also directs the Ethics Core of the Center for AIDS Prevention Studies at UCSF. Dr. Lo is a member of the National Bioethics Advisory commission and of the Data Safety Monitoring Board for the AIDS Clinical Trials Group at the National Institute of Allergy and Infectious Diseases. He is a member of the Institute of Medicine and chairs the IOM Board on Health Sciences Policy. Dr. Lo has written more than 100 articles in peer-reviewed medical journals, on such issues as decisions about life-sustaining interventions, decision-making for incompetent patients, physician-assisted suicide, and ethical issues regarding HIV infection. He is the author of Resolving Ethical Dilemmas: A Guide for Clinicians, a comprehensive analysis of ethical dilemmas in adult medicine. He is also a practicing general internist who teaches clinical medicine to residents and medical students. ELIZABETH B. ANDREWS, M.P.H., Ph.D., directs the Worldwide Epidemiology Department at Glaxo Wellcome, based in Research Triangle Park, North Carolina and Greenford, England. The epidemiology program encompasses epidemiologic research on safety, natural history of disease, disease bur-
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Protecting Data Privacy in Health Services Research den, and general descriptive epidemiology. She is currently president of the International Society for Pharmacoepidemiology, an organization broadly representative of government, industry, and academic researchers. Dr. Andrews serves as adjunct associate professor of epidemiology at the University of North Carolina (UNC) School of Public Health. She participates as a member of the Pharmaceutical Research and Manufacturers of America Clinical Safety Surveillance Committee and for three years chaired its Epidemiology Subcommittee. She is a member of the editorial board of the journal Pharmacoepidemiology and Drug Safety. She serves on the governing board of the UNC School of Public Health 's Public Health Foundation. In addition, she serves on the Advisory Panel on Research of the Association of American Medical Colleges and the Data Privacy Working Group of the European Federation of Pharmaceutical Industries and Associations. She also serves on the Food and Drug Administration's Reproductive Health Drugs Advisory Committee's Subcommittee on Pregnancy Labeling. Over the past two years, she has testified on medical records confidentiality before the U.S. Senate and House committees and the National Committee on Vital and Health Statistics. Dr. Andrews received her master's in public health and health policy and administration and Ph.D. in epidemiology from the University of North Carolina School of Public Health. Prior to joining Burroughs Wellcome in 1982, she managed the Statewide Regionalized Perinatal Care Program and directed the Purchase-of-Care Services for the State Health Department of North Carolina. JOHN COLMERS is executive director of the Maryland Health Care Commission (MHCC), an agency created through the merger of two existing health regulatory commissions. MHCC is charged with health care reform activities for the state, the development and adoption of a state health plan, and the compilation and analysis of health care datasets, among other responsibilities. Prior to the merger, Mr. Colmers was executive director of the Health Care Access and Cost Commission (HCACC), one of the organizations in the merger. The HCACC implemented many initiatives, including report cards providing information on the quality and performance of health maintenance organizations and standards for the operation of electronic health networks. Before this, Mr. Colmers was the executive director of the Health Services Cost Review Commission, overseeing Maryland's all-payer hospital rate setting system. Mr. Colmers did undergraduate work at Johns Hopkins University, received his master of public health from the University of North Carolina, and has returned to Johns Hopkins University for doctoral study of health services research. GEORGE T. DUNCAN is professor of statistics in the H. John Heinz III School of Public Policy and Management and the Department of Statistics at Carnegie Mellon University. His current research work centers on information technology and social accountability, especially on confidentiality issues. He chaired the Panel on Confidentiality and Data Access of the Commission on Behavioural and Social Sciences and Education (CBSSE) Committee on Na-
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Protecting Data Privacy in Health Services Research tional Statistics, which resulted in the report, Private Lives and Public Policies: Confidentiality and Accessibility of Government Statistics. He chaired the American Statistical Association 's Committee on Privacy and Confidentiality. He served on the American Medical Association's Expert Advisory Panel on Privacy and Confidentiality. He has been editor of the Theory and Methods Section of the Journal of the American Statistical Association. He is a fellow of the American Statistical Association, an elected member of the International Statistical Institute, and a fellow of the American Association for the Advancement of Science. JANLORI GOLDMAN directs the Health Privacy Project at Georgetown University's Institute for Health Care Research and Policy. The project is dedicated to ensuring that people's privacy is safeguarded in the health care environment. In 1997, Ms. Goldman was a visiting scholar at Georgetown University Law Center. In 1994, Ms. Goldman cofounded the Center for Democracy and Technology, a nonprofit civil liberties organization committed to preserving free speech and privacy on the Internet. Ms. Goldman also worked at the Electronic Frontier Foundation in 1994. From 1986 to 1994, Ms. Goldman was the staff attorney and director of the Privacy and Technology Project of the American Civil Liberties Union (ACLU). While at the ACLU, Ms. Goldman led the effort to enact the Video Privacy Protection Act and led efforts to protect people 's health, credit and financial information, and personal information held by the government. She was the legislative director of the Minnesota affiliate of the ACLU from 1984 to 1986. Ms. Goldman has testified frequently before the U.S. Congress and served on numerous commissions and advisory boards. Her publications include “A Federal Right of Information Privacy,” coauthored with Jerry Berman and included as a chapter in Computers, Ethics, and Social Values (ed. Helen Nissenbaum, Prentice Hall, 1995); Privacy and Health Information Systems: A Guide to Protecting Patient Confidentiality, coauthored with Deirdre Mulligan (Foundation for Health Care Quality, 1996); “Protecting Privacy to Improve Health Care,” which appeared in Health Affairs, (November - December 1998); and Promoting Health/Protecting Privacy: A Primer, coauthored with Zoe Hudson for the California Health Care Foundation and Consumers Union. The Health Privacy Project also recently released two reports: The State of Health Privacy: An Uneven Terrain/A Comprehensive Survey of State Health Privacy Statutes and Best Principles for Health Privacy: A Report of the Health Privacy Working Group. CRAIG WALTER HENDRIX is associate professor of medicine, Division of Clinical Pharmacology, Department of Medicine, Johns Hopkins University School of Medicine, where he is currently director of the Johns Hopkins' University Drug Development Unit. He also holds joint appointments in pharmacology and molecular sciences and epidemiology. He earned his M.D. at Georgetown University School of Medicine followed by postdoctoral training at Johns Hopkins Hospital. He is board-certified in internal medicine and infectious dis-
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Protecting Data Privacy in Health Services Research eases. His clinical research has focused on HIV epidemiology and prevention within military populations and clinical pharmacology of antiretroviral drugs. Dr. Hendrix is invited to lecture worldwide on HIV impact, prevention and treatment. His university service includes membership on the Johns Hopkins University School of Medicine institutional review board. MARK C. HORNBROOK, a health economist by training, is an associate director and senior investigator at the Kaiser Permanente Center for Health Research (CHR). He leads the center's program in economic, social, and health services research and is a member of the senior management team at CHR. His current research focuses on payment systems for HMOs under private and public health insurance programs. With support from the Health Care Financing Administration, the Robert Wood Johnson Foundation, and Kaiser Permanente, he is developing morbidity-based risk assessment models to adjust payments to health plans to counter selection bias. He is also developing and simulating a new risk contracting payment system for Medicare based on competitive market premiums rather than Medicare fee-for-service payments. Previously, with support from Kaiser Foundation Health Plan, Dr. Hornbrook developed health care expense forecasting models using the SF-36 and the Medicare Current Beneficiary Survey. Dr. Hornbrook directs the CHR Economics Core in conducting a series of economic evaluations of several innovative disease management, disease prevention, and health care delivery programs related to long-term care of frail elderly, smoking cessation, cancer screening, mental illness, and childhood asthma, and other studies as well. Dr. Hornbrook received a master's degree in economics from the University of Denver in 1969 and a Ph.D. in medical care organization, with emphasis in health economics, from the University of Michigan in 1975. Currently, Dr. Hornbrook chairs the Scientific Review and Evaluation Board of the Health Services Research and Development Service, Department of Veterans Affairs. He also is a member of the Measures Council of the Foundation for Accountability. He was named a fellow in the Association for Health Services Research in 1996. LISA I. IEZZONI is professor of medicine at Harvard Medical School and codirector of research in the Division of General Medicine and Primary Care, Department of Medicine, at Beth Israel Deaconess Medical Center in Boston. She received her degrees in medicine and health policy and management from Harvard University. Dr. Iezzoni has conducted numerous studies for the Agency for Health Care Policy and Research, the Health Care Financing Administration, and private foundations on a variety of topics, including the use of clinical data to predict hospitalization costs and patient outcomes, comparing severity of illness across teaching and nonteaching hospitals, evaluating the utility of severity information for quality assessment, identifying complications of care using administrative data, and using information from hospital data systems to predict patient clinical and functional outcomes. She has published and spoken widely on measurement of the severity of illness and has edited a textbook on risk ad-
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Protecting Data Privacy in Health Services Research justment for measuring health care outcomes. A 1996 recipient of the investigator Award in Health Policy Research sponsored by Robert Wood Johnson Foundation, she is studying disability policy issues relating to mobility impairments. Dr. Iezzoni is on the editorial boards of major medical health services research journals, and she serves on the National Committee on Vital and Health Statistics and the Board of Directors of the National Forum for Health Care Quality Measurement and Reporting. DONALD KORNFELD is associate dean of the Faculty of Medicine of the Columbia University College of Medicine, and professor of psychiatry and attending psychiatrist at Columbia Presbyterian Hospital. He served for six years as chairman of the Institutional Review Board at the N.Y. State Psychiatric Institute and since 1991 has been Chairman of the Columbia Presbyterian Medical Center Institutional Review Board. He is director of the Consultation/Liaison and Behavioral Medicine Service at the Columbia Presbyterian Medical Center and was a member of the first ethics committee established there. He has published on a wide variety of psychiatric problems and ethical issues related to medicine and surgery. He is a fellow of the American Psychiatric Association and a past president of the American Psychosomatic Society. ELLIOT STONE has been executive director and Corporate Eexecutive Officer of the Massachusetts Health Data Consortium since it was established in 1978 as a private, nonprofit corporation. The consortium is a neutral setting for the collection and analysis of large health care databases. The consortium publishes annual reports on hospital prices, utilization, and communities' hospital dependency to a broad constituency of health care organizations and business coalitions, and provides data and technical support to health services researchers. In 1994, Mr. Stone organized the Affiliated Health Information Networks of New England project to improve the state's electronic health care information infrastructure among health plans and providers through standards required by the federal Health Insurance Portability and Accountability. Mr. Stone served on the Institute of Medicine's Committee on Regional Health Data Networks, which published Health Data in the Information Age: Use, Disclosure and Privacy. He was a member of the Committee to Study National Cryptography Policy for the National Research Council and the National Academy of Science's Computer Science and Telecommunications Board and provided financial support for the NRC study For the Record: Protecting Electronic Health Information. PETER SZOLOVITS is professor of computer science and engineering in the Michigan Instutute of Technology (MIT) Department of Electrical Engineering and Computer Science and director of the Clinical Decision-Making Group within the MIT Laboratory for Computer Science. His research centers on the application of artificial intelligence (AI) methods to problems of medical decision making and design of information systems for health care institutions and patients. He has worked on problems of diagnosis, therapy planning, execution,
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Protecting Data Privacy in Health Services Research and monitoring for various medical conditions; computational aspects of genetic counseling; controlled sharing of health information; and privacy and confidentiality issues in medical record systems. His interests in AI include knowledge representation, qualitative reasoning, and probabilistic inference. His interests in medical computing include Web-based heterogeneous medical record systems, lifelong personal health information systems, and design of cryptographic schemes for health identifiers. He teaches classes in artificial intelligence, programming languages, medical computing, medical decision making, knowledge-based systems, and probabilistic inference. Professor Szolovits has been on the editorial board of several journals, has served as program chairman and on the program committees of national conferences, and has been a founder of and consultant for several companies that apply AI to problems of commercial interest, including W3Health, which develops Web-based solutions for connecting the health care community. He served on the Committee on Maintaining Privacy and Security in Health Care Applications on the National Information Infrastructure, which produced the NRC report For the Record. ADELE A. WALLER, J.D., is a partner and member of the Health Law Group with the Chicago law firm of Bell, Boyd and Lloyd. A substantial portion of her practice involves advising clients on legal issues related to health information technology. Ms. Waller has spoken extensively on health information technology law issues for organizations such as the American Bar Association, the American Health Lawyers Association, American Health Information Management Association, University Health System Consortium, Association for Health Services Research, and the Healthcare Information Management Systems Society. She has published numerous articles and book chapters on health information technology law topics. Ms. Waller serves on the Board of Directors of the American Health Lawyers Association, chairs its annual Health Information and Technology Conference, and served in the leadership of its Health Information and Technology Substantive Law Committee from 1994 to 1999. She is a member of on the Editorial Advisory Board of CCH Compliance and of the Editorial Board of Aspen Publishing's Managed Care Law Manual. Ms. Waller is a member of the adjunct faculty of the University of Illinois at Chicago and has been an adjunct faculty member for the Health Law Institute at the Loyola University of Chicago School of Law.
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