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Appendix C Workshop Participants PARTNERING WITH PATIENTS TO DRIVE SHARED DECISIONS, BETTER VALUE, AND CARE IMPROVEMENT Terry Adirim, MD, MPH Director, Decision Services Director, Office of Special Health Affairs University of California, San Francisco Health Resources and Services Administration Charles Alston Senior Vice President and Director of Public Affairs Greg Biggers MSL Washington Council Member and CEO, Genomera Genetic Alliance Clinton W. Anderson, PhD, Director Associate Executive Director, Public Interest Paige Bingham Directorate Manager Lesbian, Gay, Bisexual, and Transgender PatientLink Programs Concerns Office Medtronic Foundation American Psychological Association Meryl Bloomrosen, MBA David Arterburn, MD, MPH Vice President Associate Investigator Public Policy and Government Relations Group Health Research Institute American Medical Informatics Association Anne-Marie J. Audet, MD, MSc, SM David Blumenthal, MD, MPP Vice President President Health System Quality and Efficiency The Commonwealth Fund The Commonwealth Fund Marilyn Sue Bogner, PhD Kim Bailey Chief Scientist Research Director Institute for the Study of Human Error, LLC Families USA Susan Brown Trinidad, MA Michael J. Barry, MD Research Scientist, Center for Genomics & President Healthcare Equality Informed Medical Decisions Foundation Department of Bioethics & Humanities University of Washington Christine Bechtel, MA Vice President Crystal Brown-Tatum National Partnership for Women & Families Chapter President Sisters Network Jeffrey Belkora, PhD Associate Professor, Surgery and Health Policy Diane Bruessow, PA-C, DFAAPA PREPUBLICATION COPY: UNCORRECTED PROOFS 193

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Government Affairs Committee, Chair, 2012-13 Helen Darling Gay and Lesbian Medical Association President National Business Group on Health Janet Campbell Software Developer Kathy Day, RN Epic Systems Patient Safety Advocate and Activist Dottie Caplan, MBA Dave DeBronkart Director, Partners in Patient Health e-Patient Dave Sanofi US Kristin L. Carman, PhD James E. Delaney, MSPA PA-C Co-Director President Health Policy & Research Program American Academy of Physician Assistants American Institutes for Research Melissa Dorsey, MHA Carolyn Carroll, PhD Health Insurance Specialist/Government Task Leader Senior Statistician Division of ESRD Population and Community Health STAT Tech, Inc. Center for Clinical Standards & Quality Centers for Medicare & Medicaid Services Mary Teresa Casey, RD, LD Director, Division of ESRD, Joyce Dubow Population and Community Health Senior Health Care Reform Director Center for Clinical Standards and Quality Office of Policy and Strategy Centers for Medicare & Medicaid Services AARP Bowen Chung, MD, MSHS Rosemarie Filart MD, MPH, MBA Adjunct Scientist, RAND Corporation Medical Officer Assistant Professor, Department of Psychiatry Harbor- National Center for Advancing Translational Science UCLA Medical Center National Institutes of Health David Clifford Sylvia K. Fisher, PhD Independent Consultant Director, Office of Research and Evaluation PatientsLikeMe Office of the Administrator Health Resources and Services Administration Perry D. Cohen, PhD Director Lindsay Forbes Parkinson Pipeline Project Research Program Coordinator Johns Hopkins Berman Institute of Bioethics Megan Collado, MPH Associate, HCFO Laura P. Forsythe, PhD, MPH AcademyHealth Program Officer Patient-Centered Outcomes Research Institute Kathleen Connors de Laguna, RN, MSPH Health Insurance Specialist Emily C. Freeman, MSc, PhD Office of Electronic Health, Standards and Systems Associate Director Centers for Medicare & Medicaid Services US Medical- Health Services Bristol-Myers Squibb Richard Conroy, PhD Program Director Susan M. Friedman Division of Applied Science and Technology Deputy Director, Department of Government Relations National Institute of Biomed. Imaging and Bioeng. American Osteopathic Association Jonathan Darer, MD, MPH Dominick L. Frosch, PhD Chief Innovation Officer Fellow, Patient Care Program Division of Clinical Innovation Gordon & Betty Moore Foundation Geisinger Health System Shelley Fuld Nasso PREPUBLICATION COPY: UNCORRECTED PROOFS 194

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Health Policy Consultant Judith H. Hibbard, DrPH National Coalition for Cancer Survivorship Professor of Health Policy Department of Planning, Public Policy & Management Tamyra C. Garcia, MPH University of Oregon Special Assistant, Quality Improvement Group Center for Clinical Standards and Quality Eric Holmboe, MD Centers for Medicare & Medicaid Services Chief Medical Officer and Senior Vice President American Board of Internal Medicine John S. Gardenier, DBA Lisa Hopp PhD, RN FAAN Statistical Ethicist Professor, School of Nursing National Center for Health Statistics, Retired Director, Indiana Center for Evidence Based Nursing Practice Turkan K. Gardenier, PhD Purdue University Calumet Director of Research Pragmatica Corporation Ralph I. Horwitz, MD Senior Vice President Rosemary Gibson Clinical Sciences Evaluation Section Editor GlaxoSmithKline JAMA Internal Medicine Linda House, RN, BSN, MSM Marge Ginsburg Executive Vice President, External Affairs Executive Director Cancer Support Community Center for Healthcare Decisions Andrew Hu David Goldhill Senior Director President and Chief Executive Officer Policy & Research Game Show Network PhRMA Mark Gorman Thomas E. Hubbard Patient Advocate Vice President of Policy Research Former Director of Survivorship Policy, National NEHI Coalition for Cancer Survivorship Holly B. Jimison, PhD, FACMI Elizabeth Goss, JD Office of Behavioral and Social Sciences Research Partner Office of the Director Turner & Goss National Institutes of Health Katherine Green Jesse Joad, MD, MS Development Project Coordinator Professor Emeritus, Family Medicine Education Consortium University of California, Davis Vice President for Education, Sheldon Greenfield, MD Gay and Lesbian Medical Association Professor of Medicine and Executive Co-Director Health Policy Research Institute Sherrie H. Kaplan, PhD University of California, Irvine Executive Co-Director Health Policy Research Institute Paul Grundy, MD, MPH University of California, Irvine Global Director of Healthcare Transformation IBM Nancy E. Kass, ScD Professor of Bioethics and Public Health Jim Hansen Berman Institute of Bioethics Vice President Johns Hopkins Bloomberg School of Public Health Accountable Delivery System Institute Lumeris Michael W. Kelleher Senior Program Director PREPUBLICATION COPY: UNCORRECTED PROOFS 195

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NEHI James M. Anderson Center for Health Systems Excellence Cincinnati Children's Hospital Medical Center Barbara L. Kornblau, JD, OTR Executive Director J. Michael McGinnis, MD, MPP, MA Society for Participatory Medicine Senior Scholar Institute of Medicine Gary Langer Founder and President Langer Research Associates Emily Oshima Lee Coles Markis Mercier, MS Policy Analyst, Health Policy Health Insurance Specialist, BHIS Center for American Progress Center for Clinical Standards and Quality Centers for Medicare & Medicaid Services Alice Leiter, JD Policy Counsel Anne Michaels Center for Democracy & Technology President, MNA Inc. Special Projects, National Foundation for Art Levin, MPH Mental Health Director Center for Medical Consumers Erica Mobley Communications & Membership Manager Grace Lin, MD The Leapfrog Group Assistant Professor in Residence, Division of General Internal Medicine Victor M. Montori, MD, MSc University of California, San Francisco Professor of Medicine and Director, Healthcare Delivery Research Program Cristin Lind Divisions of Endocrinology and Diabetes and Family Leader Health Care and Policy Research E-caregiver, www.DurgasToolbox.com Mayo Clinic Federation for Children with Special Needs Liz Morgan Evette J. Ludman, PhD Head of Community Senior Research Associate PatientsLikeMe Group Health Research Institute Linda M Morgan, MBA, RPh Wendy Lynch, PhD Research Advocate Co-Director Parkinson's Disease Foundation Center for Consumer Choice in Health Care Altarum Institute Nancy Morris Communications and Member Services Director Katy Mahraj, MSI Maine Health Management Coalition Analyst, Information & Technology Strategies Altarum Institute Ben Moulton, JD, MPH Senior Legal Advisor Kenneth D. Mandl, MD, MPH Informed Medical Decisions Foundation Associate Professor Children's Hospital Boston, Harvard Medical Michael D. (Mick) Murray, PharmD, MPH School, and Harvard-MIT Health Sciences Professor and Technology Regenstrief Institute and Purdue University Brigitte Manteuffel, PhD Daniel Nugent, Esq. Advisory Council Member Senior Policy Manager Children's Mental Health Network National Minority AIDS Council Peter Margolis, MD, PhD Ekene Obi-Okoye Professor of Pediatrics and Director of Research Premedical Intern, Decision Services PREPUBLICATION COPY: UNCORRECTED PROOFS 196

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University of California, San Francisco BMJ Sally Okun, RN, MMHS Susan W. Salmond, EdD, RN, ANEF, FAAN Vice President, Advocacy, Policy & Patient Safety Dean and Professor PatientsLikeMe UMDNJ – School of Nursing Lyn Paget, MPH John Santa, MD, MPH Managing Partner Director Health Policy Partners Consumer Reports Health Ratings Center Consumer Reports Jumin Park Suzanne Schrandt, JD PhD Candidate, Nursing Deputy Director, Patient Engagement University of Maryland, Baltimore Patient-Centered Outcomes Research Institute Douglas W. Phillips Susan Sheridan, MBA, MIM Caregiver Director, Patient Engagement Patient-Centered Outcomes Research Institute Laura M. Phillips Patient Joanna E. Siegel, SD PatientsLikeMe Senior Health Research Scientist Agency for Healthcare Research and Quality William F. Pilkington Chief Executive Officer Melissa A. Simon, MD, MPH Cabarrus Health Alliance Director of Patient Navigation Lurie Comprehensive Cancer Center Jill Mara Plevinsky, MA Northwestern University Clinical Research Coordinator, Center for Inflammatory Bowel Disease Brad Smith Boston Children's Hospital Co-Director Chair, The Patient Advisory Council for Center for Consumer Choice in Health Care ImproveCareNow and C3N Project Altarum Institute Cincinnati Children's Hospital Mary Smith, MSHS Holly Potter Guidelines Analyst Vice President, Brand Communication American Society for Radiation Oncology Kaiser Permanente Shoshanna Sofaer, MD, DrPH Barbra G. Rabson Professor and Robert P. Luciano Chair of Executive Director Health Care Policy Massachusetts Health Quality Partners School of Public Affairs Baruch College/CUNY Susan C. Reinhard, RN, PhD Director Mary Anne Sterling, CEA Public Policy Institute Principal Consultant AARP Sterling Health IT Consulting Lygeia Ricciardi, EdM Ellen Stovall Acting Director, Office of Consumer eHealth Senior Health Policy Advisor Office of the National Coordinator for HIT National Coalition for Cancer Survivorship Pamela Rich, MPH Danielle Tarino Senior Analyst Public Health Advisor Institute on Health Care Costs and Solutions Performance Measurement Branch National Business Group On Health Substance Abuse and Mental Health Services Administration Bob Roehr Richard Thomason, MA Reporter Director, Health Care and Coverage PREPUBLICATION COPY: UNCORRECTED PROOFS 197

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Blue Shield of California Foundation Jonathan Welch, MD Instructor in Medicine Veronica Todaro, MPH Research Scientist Director of National Programs Brigham and Women's Hospital Parkinson's Disease Foundation Ross White Amy Traver Public Policy Associate Villers Fellow The Hastings Center Familes USA Daniel Wolfson Tresa Undem Executive Vice President and Chief Operating Officer Partner ABIM Foundation PerryUndem Matthew K. Wynia, MD, MPH, FACP George Velasco Director, Physician Engagement for Improving Health Guidelines Analyst Outcomes American Society for Radiation Oncology American Medical Association Kevin Volpp, MD, PhD Kelly Young Staff Physician, Philadelphia VA Medical Center Rheumatoid Arthritis Warrior Director, Center for Health Incentives and Behavioral Economics Margot Zarin-Pass Leonard Davis Institute Medical Student University of Pennsylvania University of California, San Francisco Lola A. Walker Technical Officer, Community Mobilization Program Innovation and Policy Unit Elizabeth Glaser Pediatric AIDS Foundation Sandy Walsh President California Breast Cancer Organizations 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 PREPUBLICATION COPY: UNCORRECTED PROOFS 198