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Design of a National Distributed Health Data Network
- Judith C. Maro, MS;
- Richard Platt, MD, MSc;
- John H. Holmes, PhD;
- Brian L. Strom, MD, MPH;
- Sean Hennessy, PharmD, PhD;
- Ross Lazarus, MBBS, MPH; and
- Jeffrey S. Brown, PhD
- From Massachusetts Institute of Technology, Cambridge, and Harvard Medical School and Harvard Pilgrim Health Care, Boston, Massachusetts; and University of Pennsylvania, Philadelphia, Pennsylvania.
Abstract
A distributed health data network is a system that allows secure remote analysis of separate data sets, each comprising a different medical organization's or health plan's records. Distributed health data networks are currently being planned that could cover millions of people, permitting studies of comparative clinical effectiveness, best practices, diffusion of medical technologies, and quality of care. These networks could also support assessment of medical product safety and other public health needs. Distributed network technologies allow data holders to control all uses of their data, which overcomes many practical obstacles related to confidentiality, regulation, and proprietary interests. Some of the challenges and potential methods of operation of a multipurpose, multi-institutional distributed health data network are described.
Article and Author Information
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Note: Several ideas expressed here were presented at an Institute of Medicine workshop in December 2007 and discussed in a follow-on publication: Platt R. Distributed data networks. In: Institute of Medicine. Redesigning the Clinical Effectiveness Paradigm—Innovation and Practice based Approaches. Washington, DC: National Academies Pr; 2009.
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Disclaimer: The authors of this report are responsible for its content. Statements in this report should not be construed as endorsement by the Agency for Healthcare Research and Quality or the U.S. Department of Health and Human Services.
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Acknowledgment: The authors thank Kimberly Lane, MPH, and Beth Syat, MPH, for their project support and Scott Smith, PhD, for his helpful comments.
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Grant Support: By the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (contract no. 290-05-0033), as part of the Developing Evidence to Inform Decisions about Effectiveness (DEcIDE) program.
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Potential Financial Conflicts of Interest: Consultancies: B.L. Strom (Abbott Laboratories, Bayer Corporation, Bristol-Myers Squibb, Daichii Pharmaceuticals UK, GlaxoSmithKline, Johnson & Johnson, Mediwound, Novartis Farmaceutica, NPS Pharmaceuticals, Oscient, Pfizer, Sanofi-Aventis, Teva Neuroscience, Wyeth), S. Hennessy (Wyeth; Teva; and law firms representing Bayer, Eli Lilly, and Pfizer), J.S. Brown (Phase Forward). Honoraria: J.H. Holmes (American Medical Informatics Association), B.L. Strom (Johnson & Johnson, Washington University), J.S. Brown (HealthCore). Expert testimony: R. Platt (Agency for Healthcare Research and Quality, U.S. Food and Drug Administration). Grants received: R. Platt (Sanofi-Aventis, GlaxoSmithKline, Pfizer, TAP Pharmaceuticals, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, U.S. Food and Drug Administration, National Institutes of Health, America's Health Insurance Plans, Massachusetts Department of Public Health), J.H. Holmes (Agency for Healthcare Research and Quality, National Library of Medicine, National Cancer Institute, National Institute for Allergy and Infectious Disease, National Institute for Diabetes and Digestive and Kidney Diseases), B.L. Strom (National Institutes of Health, Agency for Healthcare Research and Quality, Takeda Pharmaceuticals, Shire Development), S. Hennessy (Agency for Healthcare Research and Quality, National Institutes of Health, Shire Development), J.S. Brown (Sanofi-Aventis, GlaxoSmithKline, Pfizer, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, U.S. Food and Drug Administration, National Institutes of Health). Grants pending: J.H. Holmes (National Library of Medicine, National Cancer Institute, National Institute for Neurological Disorders and Stroke), B.L. Strom (National Institutes of Health, AstraZeneca, Bristol-Myers Squibb), S. Hennessy (U.S. Food and Drug Administration).
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Requests for Single Reprints: Jeffrey S. Brown, PhD, Department of Ambulatory Care and Prevention, Harvard Medical School and Harvard Pilgrim Health Care, 133 Brookline Avenue, 6th Floor, Boston, MA 02215; e-mail, jeff_brown{at}harvardpilgrim.org.
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Current Author Addresses: Ms. Maro: Engineering Systems Division, Massachusetts Institute of Technology, 77 Massachusetts Avenue, Building 41-205, Cambridge, MA 02139.
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Drs. Platt and Brown: Department of Ambulatory Care and Prevention, Harvard Medical School and Harvard Pilgrim Health Care, 133 Brookline Avenue, 6th Floor, Boston, MA 02215.
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Dr. Holmes: Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania School of Medicine, 726 Blockley Hall, 423 Guardian Drive, Philadelphia, PA 19104-6021.
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Dr. Strom: Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania School of Medicine, 824 Blockley Hall, 423 Guardian Drive, Philadelphia, PA 19104-6021.
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Dr. Hennessy: Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania School of Medicine, 803 Blockley Hall, 423 Guardian Drive, Philadelphia, PA 19104-6021.
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Mr. Lazarus: Channing Laboratory, 181 Longwood Avenue, Boston, MA 02115.
