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Personalized Healthcare Workgroup

At the October 31, 2006, meeting, the Community formed the Personalized Healthcare Workgroup (PHC WG). The workgroup is charged with determining how health information technology (HIT) can be used for the development of standards for interoperable integration of genomic test information into personal e-health records. Personalized healthcare begins with health information technology (HIT) and the electronic health record. As the Secretary stated at the AHIC meeting on September 12, 2006, “…genomics will play an increasingly larger role in medicine, and now is the time to figure out how best to incorporate genetic information into e-health records, before multiple nonstandard approaches take hold.”

The PHC WG members represent providers, health plans, pharmaceutical and diagnostics industry, medical ethics, laboratories, academic research institutions, patient advocates, and federal agencies. The meetings of the PHC WG are public and meeting materials are available to the public.

Charges help the Workgroups make recommendations to the Community based on the most complete information.


Broad Charge for the Workgroup:

Make recommendations to the American Health Information Community for a process to foster a broad, community-based approach to establish a common pathway based on common data standards to facilitate the incorporation of interoperable, clinically useful genetic/genomic information and analytical tools into electronic health records to support clinical decision-making for the clinician and consumer.


Specific Charge for the Workgroup:

Make recommendations to the American Health Information Community to consider means to establish standards for reporting and incorporation of common medical genetic/genomic tests and family health history data into electronic health records, and provide incentives for adoption across the country including federal government agencies.


Workgroup Member List:

Member Organization
Co-Chairs  
John Glaser Partners HealthCare
Douglas Henley American Academy of Family Physicians
ONC Director  
Gregory Downing HHS/Office of the Secretary
Members  
Carolyn Clancy HHS/Agency for Healthcare Research and Quality
Beryl Crossley American Clinical Laboratory Association, Quest
Paul Cusenza Consultant
Andrea Ferreira-Gonzalez Association for Molecular Pathology; SACGHS
Rebecca Fisher Patient Advocate
Felix Frueh HHS/Food and Drug Administration
Emory Fry Department of Defense
Alan Guttmacher HHS/National Institutes of Health/National Human Genome Research Institute
Kathy Hudson Johns Hopkins University, Genetics & Public Policy Center
Betsy Humphreys HHS/National Institutes of Health/National Library of Medicine
Charles Kennedy WellPoint, Inc.
Joel Kupersmith Department of Veterans Affairs
Stephen Matteson Pfizer Global Research & Development
Deven McGraw Center for Democracy & Technology
Amy McGuire Baylor College of Medicine, Center for Medical Ethics and Health Policy
Mark Rothstein University of Louisville School of Medicine
Steve Teutsch Merck & Co., Inc.; SACGHS
Janet Warrington Consultant
Andrew Wiesenthal Permanente Federation for Clinical Information Support
Dennis Williams HHS/Health Resources and Services Administration
Marc Williams Intermountain Healthcare Clinical Genetics Institute
Senior Advisors  
Mary Beth Bigley Office of the U.S. Surgeon General
Ronald Farkas HHS/Food and Drug Administration
Greg Feero HHS/National Institutes of Health/National Human Genome Research Institute
Joseph Kelly HHS/Centers for Medicare & Medicaid Services
Muin Khoury HHS/Centers for Disease Control and Prevention; SACGHS (ex-officio)
Katherine Kolor HHS/Centers for Disease Control and Prevention
Michele Lloyd-Puryear HHS/Health Resources and Services Administration
Elizabeth Mansfield HHS/Food and Drug Administration
Clement McDonald HHS/National Institutes of Health/National Library of Medicine
Dina Paltoo HHS/National Institutes of Health/National Heart, Lung, and Blood Institute
Jonathan Perlin HCA, Inc.
Ronald Przygodzki Department of Veterans Affairs
Gurvaneet Randhawa HHS/Agency for Healthcare Research and Quality
Lisa Rovin HHS/Food and Drug Administration
Maren Scheuner RAND Corporation
Jean Slutsky HHS/Agency for Healthcare Research and Quality
Reed Tuckson UnitedHealth Group; SACGHS
Mollie Ullman-Cullere Harvard Partners Center for Genetics and Genomics
SACGHS = Secretary’s Advisory Committee on Genetics, Health, and Society
  last updated on 03/03/08


Upcoming Meetings of the Personalized Healthcare Workgroup:

  • Tuesday, October 14, 2008, 1:00 p.m., E.T.