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.
David Lansky, PhD, Pacific Business Group on Health (Chair)
Matt Kavanagh, Independent Contractor
Josh Lemieux, Markle Foundation
Wendy Angst, MHA, CapMed, A Division of Bio-Imaging Technologies, Inc.
Annette Bar-Cohen, MPH, National Breast Cancer Coalition
Jeremy Coote, InterComponentWare, Inc.
Maureen Costello, Ingenix
Diane Davies, MD, University of Minnesota
James Dempsey, JD, Center for Democracy and Technology
Stephen Downs, SM, Robert Wood Johnson Foundation
Joyce Dubow, AARP
Thomas Eberle, MD, Intel Corporation and Dossi
Lisa Fenichel, Health Care For All
Stefanie Fenton, Intuit, Inc.
Steven Findlay, Consumers Union
Mark Frisse, MD, MBA, MSc, Vanderbilt Center for Better Health
Gilles Frydman, Association of Cancer Online Resources (ACOR.org)
Melissa Goldstein, JD, School of Public Health and Health Services Department of Health Sciences, The George Washington University Medical Center
Philip T. Hagen, MD, Mayo Clinic Health Solutions
Robert Heyl, Aetna, Inc.
David Kibbe, MD, MBA, American Academy of Family Physicians
Jerry Lin, Google Health
Kathleen Mahan, MBA, SureScripts
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.
