Acknowledgements
This framework proposes a set of practices that, when taken together, encourage appropriate handling of personal health information as it flows to and from personal health records (PHRs) and similar applications or supporting services. This framework is a collaborative work of the Markle Connecting for Health Work Group on Consumer Access Policies for Networked Personal Health Information—a public-private collaboration operated and financed by the Markle Foundation. Markle Connecting for Health thanks Work Group Chair David Lansky, PhD, Pacific Business Group on Health, for leading the consensus development process for this framework, and Josh Lemieux, Markle Foundation, for drafting and editing the documents. We thank Carol Diamond, MD, MPH, managing director at the Markle Foundation, for developing the conceptual structure for this approach to networked personal health information. We particularly thank the members of the Work Group, whose affiliations are listed below for identification purposes only, for reviewing several drafts of these documents and improving them invaluably each time.
Jim Dempsey, JD, Center for Democracy and Technology; Janlori Goldman, JD, Health Privacy Project and Columbia University School of Public Health; Joy Pritts, JD, Center on Medical Record Rights and Privacy, Health Policy Institute, Georgetown University; and Marcy Wilder, JD, Hogan & Hartson LLP, made important contributions to the policy framework. Matt Kavanagh, independent contractor, and Clay Shirky, New York University Graduate Interactive Telecommunications Program, made important contributions to the technology framework. Stefaan Verhulst of Markle Foundation provided excellent research, and Jennifer DePasquale and Michelle Maran of Markle contributed to this framework's final proofreading and production, respectively.
Connecting for Health Work Group on Consumer Access Policies for Networked Personal Health Information
LeadDavid Lansky, PhD, Pacific Business Group on Health (Chair)
Matt Kavanagh, Independent Contractor |
Ken Majkowski, PharmD, RxHub, LLC Philip Marshall MD, MPH, WebMD Health Deven McGraw, Center for Democracy and Technology Kim Nazi, FACHE*, U.S. Department of Veterans Affairs Lee Partridge, National Partnership for Women and Families George Peredy, MD, Kaiser Permanente HealthConnect Joy Pritts, JD, Center on Medical Record Rights and Privacy, Health Policy Institute, Georgetown University Scott Robertson, PharmD, Kaiser Permanente Daniel Sands, MD, MPH, Cisco Systems, Inc. Clay Shirky, New York University Graduate Interactive Telecommunications Program Joel Slackman, BlueCross BlueShield Association Anna Slomovic, PhD, Revolution Health Cynthia Solomon, Follow Me Ramesh Srinivasan, MedicAlert Foundation International Michael Stokes, Microsoft Corporation Susan Stuard, New York-Presbyterian Hospital Paul Tang, MD, Palo Alto Medical Foundation / Sutter Health Jeanette Thornton, America's Health Insurance Plans Frank Torres, JD, Microsoft Corporation Tony Trenkle*, Centers for Medicare & Medicaid Services Jonathan Wald, MD, Partners HealthCare System James Walker, MD, FACP, Geisinger Health System Marcy Wilder, JD, Hogan & Hartson LLP Anna Wong, Medco Health Solutions, Inc. Matthew Wynia, MD, MPH, CAPH, American Medical Association Teresa Zayas-Caban, PhD*, Agency for Healthcare Research and Quality |
*Note: State and Federal employees participate in the Personal Health Technology Council but make no endorsement.
Randy Watson
"Everybody in the country should have access to electronic health records, where they can download them at any time."
Health in a Networked Life
Health in a Networked Life is an exploration of the social and cultural changes that result from an increasingly interconnected society.