Appendix C
Workshop Participants

Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement

Terry Adirim, MD, MPH

Director, Office of Special Health Affairs

Health Resources and Services

Administration

Charles Alston

Senior Vice President and Director of Public

Affairs

MSL Washington

Clinton W. Anderson, PhD, Director

Associate Executive Director, Public Interest

Directorate

Lesbian, Gay, Bisexual, and Transgender Concerns Office

American Psychological Association

David Arterburn, MD, MPH

Associate Investigator

Group Health Research Institute

Anne-Marie J. Audet, MD, MSc, SM

Vice President

Health System Quality and Efficiency

The Commonwealth Fund

Kim Bailey

Research Director

Families USA

Michael J. Barry, MD

President

Informed Medical Decisions Foundation

Christine Bechtel, MA

Vice President

National Partnership for Women & Families

Jeffrey Belkora, PhD

Associate Professor, Surgery and Health

Policy

Director, Decision Services

University of California, San Francisco

Greg Biggers

Council Member and CEO, Genomera

Genetic Alliance

Paige Bingham

Manager

PatientLink Programs

Medtronic Foundation

Meryl Bloomrosen, MBA

Vice President

Public Policy and Government Relations

American Medical Informatics Association

David Blumenthal, MD, MPP

President

The Commonwealth Fund



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Appendix C Workshop Participants Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement Terry Adirim, MD, MPH Michael J. Barry, MD Director, Office of Special Health Affairs President Health Resources and Services Informed Medical Decisions Foundation Administration Christine Bechtel, MA Charles Alston Vice President Senior Vice President and Director of Public National Partnership for Women & Families Affairs MSL Washington Jeffrey Belkora, PhD Associate Professor, Surgery and Health Clinton W. Anderson, PhD, Director Policy Associate Executive Director, Public Director, Decision Services Interest University of California, San Francisco Directorate Lesbian, Gay, Bisexual, and Transgender Greg Biggers Concerns Office Council Member and CEO, Genomera American Psychological Association Genetic Alliance David Arterburn, MD, MPH Paige Bingham Associate Investigator Manager Group Health Research Institute PatientLink Programs Medtronic Foundation Anne-Marie J. Audet, MD, MSc, SM Vice President Meryl Bloomrosen, MBA Health System Quality and Efficiency Vice President The Commonwealth Fund Public Policy and Government Relations American Medical Informatics Association Kim Bailey Research Director David Blumenthal, MD, MPP Families USA President The Commonwealth Fund 197

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Marilyn Sue Bogner, PhD Perry D. Cohen, PhD Chief Scientist Director Institute for the Study of Human Error, LLC Parkinson Pipeline Project Crystal Brown-Tatum Megan Collado, MPH Chapter President Associate, Health Care Financing and Sisters Network Organization AcademyHealth Diane Bruessow, PA-C, DFAAPA Government Affairs Committee, Chair, 2012- Kathleen Connors de Laguna, RN, MSPH 13 Health Insurance Specialist Gay and Lesbian Medical Association Office of Electronic Health, Standards and Systems Janet Campbell Centers for Medicare & Medicaid Services Software Developer Epic Systems Richard Conroy, PhD Program Director Dottie Caplan, MBA Division of Applied Science and Director, Partners in Patient Health Technology Sanofi U.S. National Institute of Biomedical Imaging and Bioengineering Kristin L. Carman, PhD Co-Director Jonathan Darer, MD, MPH Health Policy & Research Program Chief Innovation Officer American Institutes for Research Division of Clinical Innovation Geisinger Health System Carolyn Carroll, PhD Senior Statistician Helen Darling STAT Tech, Inc. President National Business Group on Health Mary Teresa Casey, RD, LD Director, Division of ESRD, Kathy Day, RN Population and Community Health Patient Safety Advocate and Activist Center for Clinical Standards and Quality Centers for Medicare & Medicaid Services Dave DeBronkart e-Patient Dave Bowen Chung, MD, MSHS Adjunct Scientist, RAND Corporation James E. Delaney, MSPA PA-C Assistant Professor, Department of President Psychiatry Harbor-UCLA Medical Center American Academy of Physician Assistants David Clifford Independent Consultant PatientsLikeMe 198

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Melissa Dorsey, MHA Dominick L. Frosch, PhD Health Insurance Specialist/Government Task Fellow, Patient Care Program Leader Gordon and Betty Moore Foundation Division of ESRD Population and Community Health Tamyra C. Garcia, MPH Center for Clinical Standards & Quality Special Assistant, Quality Improvement Group Centers for Medicare & Medicaid Services Center for Clinical Standards and Quality Centers for Medicare & Medicaid Services Joyce Dubow Senior Health Care Reform Director John S. Gardenier, DBA Office of Policy and Strategy Statistical Ethicist AARP National Center for Health Statistics, Retired Rosemarie Filart, MD, MPH, MBA Turkan K. Gardenier, PhD Medical Officer Director of Research National Center for Advancing Translational Pragmatica Corporation Science National Institutes of Health Rosemary Gibson Section Editor Sylvia K. Fisher, PhD JAMA Internal Medicine Director, Office of Research and Evaluation Office of the Administrator Marge Ginsburg Health Resources and Services Executive Director Administration Center for Healthcare Decisions Lindsay Forbes David Goldhill Research Program Coordinator President and Chief Executive Officer Johns Hopkins Berman Institute of Bioethics Game Show Network Laura P. Forsythe, PhD, MPH Mark Gorman Program Officer Patient Advocate Patient-Centered Outcomes Research Former Director of Survivorship Policy Institute National Coalition for Cancer Survivorship Emily C. Freeman, MSc, PhD Elizabeth Goss, JD Associate Director Partner U.S. Medical-Health Services Turner & Goss Bristol-Myers Squibb Katherine Green Susan M. Friedman Development Project Coordinator Deputy Director, Department of Government Family Medicine Education Consortium Relations American Osteopathic Association 199

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Sheldon Greenfield, MD Thomas E. Hubbard Professor of Medicine and Executive Co- Vice President of Policy Research Director Network for Excellence in Health Health Policy Research Institute Innovation University of California, Irvine Holly B. Jimison, PhD, FACMI Paul Grundy, MD, MPH Office of Behavioral and Social Sciences Global Director of Healthcare Research Transformation Office of the Director IBM National Institutes of Health Jim Hansen Jesse Joad, MD, MS Vice President Professor Emeritus, Accountable Delivery System Institute University of California, Davis Lumeris Vice President for Education, Gay and Lesbian Medical Association Judith H. Hibbard, DrPH Professor of Health Policy Sherrie H. Kaplan, PhD Department of Planning, Public Policy & Executive Co-Director Management Health Policy Research Institute University of Oregon University of California, Irvine Eric Holmboe, MD Nancy E. Kass, ScD Chief Medical Officer and Senior Vice Professor of Bioethics and Public Health President Berman Institute of Bioethics American Board of Internal Medicine Johns Hopkins Bloomberg School of Public Health Lisa Hopp, PhD, RN, FAAN Professor, School of Nursing Michael W. Kelleher Director, Indiana Center for Evidence-Based Senior Program Director Nursing Practice Network for Excellence in Health Purdue University Calumet Innovation Ralph I. Horwitz, MD Barbara L. Kornblau, JD, OTR Senior Vice President Executive Director Clinical Sciences Evaluation Society for Participatory Medicine GlaxoSmithKline Gary Langer Linda House, RN, BSN, MSM Founder and President Executive Vice President, External Affairs Langer Research Associates Cancer Support Community Emily Oshima Lee Andrew Hu Policy Analyst, Health Policy Senior Director Center for American Progress Policy & Research PhRMA 200

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Alice Leiter, JD Peter Margolis, MD, PhD Policy Counsel Professor of Pediatrics and Director of Research Center for Democracy & Technology James M. Anderson Center for Health Systems Excellence Art Levin, MPH Cincinnati Children’s Hospital Medical Director Center Center for Medical Consumers J. Michael McGinnis, MD, MPP, MA Grace Lin, MD Senior Scholar Assistant Professor in Residence, Division Institute of Medicine of General Internal Medicine University of California, San Francisco Coles Markis Mercier, MS Health Insurance Specialist, BHIS Cristin Lind Center for Clinical Standards and Quality Family Leader Centers for Medicare & Medicaid Services E-caregiver, www.DurgasToolbox.com Federation for Children with Special Needs Anne Michaels President, MNA Inc. Evette J. Ludman, PhD Special Projects, National Foundation for Senior Research Associate Mental Health Group Health Research Institute Erica Mobley Wendy Lynch, PhD Communications & Membership Manager Co-Director The Leapfrog Group Center for Consumer Choice in Health Care Altarum Institute Victor M. Montori, MD, MSc Professor of Medicine and Katy Mahraj, MSI Director, Healthcare Delivery Research Analyst, Information & Technology Program Strategies Divisions of Endocrinology and Diabetes Altarum Institute and Health Care and Policy Research Mayo Clinic Kenneth D. Mandl, MD, MPH Associate Professor Liz Morgan Children’s Hospital Boston, Harvard Head of Community Medical School, and Harvard-MIT Health PatientsLikeMe Sciences and Technology Linda M. Morgan, MBA, RPh Brigitte Manteuffel, PhD Research Advocate Advisory Council Member Parkinson’s Disease Foundation Children’s Mental Health Network Nancy Morris Communications and Member Services Director Maine Health Management Coalition 201

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Ben Moulton, JD, MPH Jill Mara Plevinsky, MA Senior Legal Advisor Clinical Research Coordinator, Center for Informed Medical Decisions Foundation Inflammatory Bowel Disease Boston Children’s Hospital Michael (Mick) D. Murray, PharmD, MPH Chair, The Patient Advisory Council for Professor ImproveCareNow and C3N Project Regenstrief Institute and Purdue University Cincinnati Children’s Hospital Shelley Fuld Nasso Holly Potter Health Policy Consultant Vice President, Brand Communication National Coalition for Cancer Survivorship Kaiser Permanente Daniel Nugent, Esq. Barbra G. Rabson Senior Policy Manager Executive Director National Minority AIDS Council Massachusetts Health Quality Partners Ekene Obi-Okoye Susan C. Reinhard, RN, PhD Premedical Intern, Decision Services Director University of California, San Francisco Public Policy Institute AARP Sally Okun, RN, MMHS Vice President, Advocacy, Policy & Patient Lygeia Ricciardi, EdM Safety Acting Director, Office of Consumer PatientsLikeMe eHealth Office of the National Coordinator for Lyn Paget, MPH Health Information Technology Managing Partner Health Policy Partners Pamela Rich, MPH Senior Analyst Jumin Park Institute on Health Care Costs and Solutions PhD Candidate, Nursing National Business Group on Health University of Maryland, Baltimore Bob Roehr Douglas W. Phillips Reporter Caregiver BMJ Laura M. Phillips Susan W. Salmond, EdD, RN, ANEF, Patient FAAN PatientsLikeMe Dean and Professor UMDNJ–School of Nursing William F. Pilkington Chief Executive Officer John Santa, MD, MPH Cabarrus Health Alliance Director Consumer Reports Health Ratings Center Consumer Reports 202

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Suzanne Schrandt, JD Danielle Tarino Deputy Director, Patient Engagement Public Health Advisor Patient-Centered Outcomes Research Performance Measurement Branch Institute Substance Abuse and Mental Health Services Administration Susan Sheridan, MBA, MIM Director, Patient Engagement Richard Thomason, MA Patient-Centered Outcomes Research Director, Health Care and Coverage Institute Blue Shield of California Foundation Joanna E. Siegel, SD Veronica Todaro, MPH Senior Health Research Scientist Director of National Programs Agency for Healthcare Research and Quality Parkinson’s Disease Foundation Melissa A. Simon, MD, MPH Amy Traver Director of Patient Navigation Villers Fellow Lurie Comprehensive Cancer Center Familes USA Northwestern University Susan Brown Trinidad, MA Brad Smith Research Scientist, Center for Genomics & Co-Director Healthcare Equality Center for Consumer Choice in Health Care Department of Bioethics & Humanities Altarum Institute University of Washington Mary Smith, MSHS Tresa Undem Guidelines Analyst Partner American Society for Radiation Oncology PerryUndem Shoshanna Sofaer, MD, DrPH George Velasco Professor and Robert P. Luciano Chair of Guidelines Analyst Health Care Policy American Society for Radiation Oncology School of Public Affairs Baruch College/City University of New Kevin Volpp, MD, PhD York Staff Physician, Philadelphia VA Medical Center Director, Center for Health Incentives and Mary Anne Sterling, CEA Behavioral Economics Principal Consultant Leonard Davis Institute Sterling Health IT Consulting University of Pennsylvania Ellen Stovall Lola A. Walker Senior Health Policy Advisor Technical Officer, Community Mobilization National Coalition for Cancer Survivorship Program Innovation and Policy Unit Elizabeth Glaser Pediatric AIDS Foundation 203

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Sandy Walsh Matthew K. Wynia, MD, MPH, FACP President Director, Physician Engagement for California Breast Cancer Organizations Improving Health Outcomes American Medical Association Jonathan Welch, MD Instructor in Medicine Kelly Young Research Scientist Rheumatoid Arthritis Warrior Brigham and Women’s Hospital Margot Zarin-Pass Ross White Medical Student Public Policy Associate University of California, San Francisco The Hastings Center Daniel Wolfson Executive Vice President and Chief Operating Officer American Board of Internal Medicine Foundation IOM Staff Daniel Bethea Julia Sanders Web Content Assistant Senior Program Assistant Claudia Grossmann, PhD Robert Saunders Senior Program Officer Senior Program Officer Elizabeth Johnston Barret Zimmermann Program Assistant Program Assistant Valerie Rohrbach Senior Program Assistant 204