Appendix B

Biographical Sketches of Workshop Speakers and Planning Committee Members

David Arterburn, MD, MPH, is a general internist and a health services researcher who holds positions as an Associate Investigator at Group Health Research Institute and as an Affiliate Associate Professor with the University of Washington School of Medicine in Seattle. He is a graduate of the University of Kentucky’s College of Medicine, and he completed his residency and chief residency in Internal Medicine at the University of Texas Health Science Center at San Antonio. He also holds an MPH from the University of Washington. As former U.S. Department of Veterans Affairs (VA) Health Services Research & Development (HSR&D) career development grantee, Dr. Arterburn has received training in health services research from three VA HSR&D programs. He has been awarded numerous federal and foundation grants and has published more than 40 scientific manuscripts in the areas of obesity and shared decision making. Dr. Arterburn’s current research covers a broad range, including comparative effectiveness of weight management interventions, pharmacoepidemiology, pharmacogenetics, bariatric surgery, and shared decision making related to elective surgery. Dr. Arterburn’s prior research in the area of obesity pharmacotherapy has had a significant impact on clinical practice guidelines issued by the VA, the U.S. Preventive Services Task Force, the Agency for Healthcare Research and Quality, and the American College of Physicians. Dr. Arterburn is the past Chair of the Adult Obesity Measurement Advisory Panel for the National Committee on Quality Assurance, the Founding Chair of the Health Services Research Section of The Obesity Society, and past Chair of the HMORN Obesity Research Network. He serves as Medical Editor for the Informed Medical Decisions Foundation, and he is a standing member of the Group Health Human Subjects Review Committee.

Jeff Belkora, PhD, is Associate Professor of Surgery and Health Policy at the University of California, San Francisco (UCSF). His professional mission is to help people grow in their capacity for leadership, teamwork, and decision making. To this end, Dr. Belkora develops, implements, and evaluates patient engagement programs in health care. His programs have been implemented and evaluated in academic and community settings in the United States and the United Kingdom. He is the author of peer-reviewed journal articles, book chapters, and case studies on patient decision making. Dr. Belkora also disseminates his work internationally through speaking, training, and consulting engagements. Prior to joining the UCSF faculty, Dr. Belkora was a co-founder of Outcome Software, a decision analysis software company. Before Outcome, Dr. Belkora worked as a management consultant at Strategic Decisions Group. Dr. Belkora earned a BSc in Applied Mathematics from Brown University. His graduate training at Stanford University included an MSc in Statistics and culminated with a PhD in Engineering. In



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Appendix B Biographical Sketches of Workshop Speakers and Planning Committee Members David Arterburn, MD, MPH, is a general internist and a health services researcher who holds positions as an Associate Investigator at Group Health Research Institute and as an Affiliate Associate Professor with the University of Washington School of Medicine in Seattle. He is a graduate of the University of Kentucky’s College of Medicine, and he completed his residency and chief residency in Internal Medicine at the University of Texas Health Science Center at San Antonio. He also holds an MPH from the University of Washington. As former U.S. Department of Veterans Affairs (VA) Health Services Research & Development (HSR&D) career development grantee, Dr. Arterburn has received training in health services research from three VA HSR&D programs. He has been awarded numerous federal and foundation grants and has published more than 40 scientific manuscripts in the areas of obesity and shared decision making. Dr. Arterburn’s current research covers a broad range, including comparative effectiveness of weight management interventions, pharmacoepidemiology, pharmacogenetics, bariatric surgery, and shared decision making related to elective surgery. Dr. Arterburn’s prior research in the area of obesity pharmacotherapy has had a significant impact on clinical practice guidelines issued by the VA, the U.S. Preventive Services Task Force, the Agency for Healthcare Research and Quality, and the American College of Physicians. Dr. Arterburn is the past Chair of the Adult Obesity Measurement Advisory Panel for the National Committee on Quality Assurance, the Founding Chair of the Health Services Research Section of The Obesity Society, and past Chair of the HMORN Obesity Research Network. He serves as Medical Editor for the Informed Medical Decisions Foundation, and he is a standing member of the Group Health Human Subjects Review Committee. Jeff Belkora, PhD, is Associate Professor of Surgery and Health Policy at the University of California, San Francisco (UCSF). His professional mission is to help people grow in their capacity for leadership, teamwork, and decision making. To this end, Dr. Belkora develops, implements, and evaluates patient engagement programs in health care. His programs have been implemented and evaluated in academic and community settings in the United States and the United Kingdom. He is the author of peer-reviewed journal articles, book chapters, and case studies on patient decision making. Dr. Belkora also disseminates his work internationally through speaking, training, and consulting engagements. Prior to joining the UCSF faculty, Dr. Belkora was a co-founder of Outcome Software, a decision analysis software company. Before Outcome, Dr. Belkora worked as a management consultant at Strategic Decisions Group. Dr. Belkora earned a BSc in Applied Mathematics from Brown University. His graduate training at Stanford University included an MSc in Statistics and culminated with a PhD in Engineering. In 183

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2008, the U.S. Agency for Healthcare Research and Quality selected his UCSF Decision Services Program as 1 of the first 100 innovations profiled in its Innovations Exchange. In 2009, Decision Services won an innovation contest sponsored by the Mayo Clinic Center for Innovation. The U.S. Department of Health and Human Services also featured Dr. Belkora’s Decision Services Program in its 2010 National Healthcare Quality Report as a highlight in the area of patient and family engagement. Greg Biggers is a patient, caregiver, innovator, and a champion for the consumer voice across all of health care and research. He serves on the Council of Genetic Alliance, a leading health advocacy organization transforming health through dissolving boundaries and fostering dialogue among all stakeholders. He is also Chief Instigator and CEO at Genomera, a community fueling the participant-driven research movement, where people move from subjects to research collaborators, and where patients (Genomera just calls them people) drive the agenda and engage with one another to grow and test health science evidence. Mr. Biggers also serves on the board of an elementary school and a community development organization and advises startups. With more than 20 years’ experience in executive, investor, and founder roles in innovative organizations, he has spent most of his career focused on growing human collaboration and engagement. Dominick L. Frosch, PhD, is a behavioral scientist with a long-standing interest in patient engagement. For the past 15 years his research has focused on shared decision making and developing, evaluating, and implementing patient decision support interventions (DESIs). He has conducted several randomized controlled trials of DESIs and for the past 6 years has focused on implementing them in routine clinical practice and in primary and specialty care settings. His research has drawn extensively on qualitative research methods to identify factors associated with successful implementation of DESIs, as well as patient perspectives on shared decision making and patient-centered care. Dr. Frosch completed his PhD in clinical health psychology at the University of California, San Diego, and a fellowship as a Robert Wood Johnson Foundation Health & Society Scholar at the University of Pennsylvania. Dr. Frosch serves as Patient Care Fellow at the Gordon and Betty Moore Foundation, Consulting Investigator at the Palo Alto Medical Foundation Research Institute, and Adjunct Associate Professor of Medicine at the University of California, Los Angeles. Marge Ginsburg is the Executive Director of the Center for Healthcare Decisions (CHCD), a nonprofit, nonpartisan organization that seeks the public’s informed views on health care policy. Through deliberative small-group processes, the lay public addresses difficult issues from a societal perspective. Currently, CHCD is working with American Institutes for Research on an Agency for Healthcare Research and Quality–funded project that conducted national discussions identifying societal values related to the use of medical evidence. Last year, CHCD worked with California’s health benefit exchange in developing a fair model for cost-sharing from the perspective of future enrollees. CHCD is now leading a multi-organizational project in California to capture seniors’ and boomers’ priorities for the Medicare of the future. In 2011, Ms. Ginsburg was a member of the Institute of Medicine’s Committee on Essential Health Benefits to develop the principles for coverage under the Patient Protection and Affordable Care Act. She is a member of the National Committee for Quality Assurance’s Committee on Performance Measurement, the Medi-Cal Performance Advisory Committee, and others to improve health 184

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care in California. She received her nursing degree from the University of Maryland and an MPH from University of California, Berkeley. In a prior life, she worked for the United Farm Workers, ran a free clinic in Philadelphia, was a Peace Corps nurse in Nepal, and other stuff one does in one’s 20s and 30s. An avowed late bloomer, she discovered the “health decisions” movement in 1991 and has not budged since. David Goldhill, MA, is president and chief executive officer of the Game Show Network (GSN), which operates a U.S. cable television network seen in more than 75 million homes and one of the world’s largest digital games companies. GSN is owned by DIRECTV and Sony Pictures Entertainment. Prior to joining GSN, Goldhill was chairman and CEO of INTH, which founded and operated the TV3 television network in Russia through its sale to the Interros Group in December 2006. He also served as president and chief operating officer of Universal Television Group, a division of Universal Studios. In this capacity, he oversaw all operations at the company’s domestic and international cable television networks (including USA and SciFi), cable and network television studios, first-run syndication business, and worldwide television distribution. Goldhill was the chief financial officer of Act III Communications, a privately owned holding company with interests in television stations, movie theaters, magazines, and film/television production. He began his career as an investment banker with Morgan Stanley and Lehman Brothers. Goldhill published a notable cover story in the 2009 issue of The Atlantic magazine, titled “How American Health Care Killed My Father.” The article received widespread acclaim and media attention from numerous outlets, including The New York Times, Barron’s, CNN, NPR, The Wall Street Journal, The Huffington Post, and many others. He is a member of the Board of Directors of the Leapfrog Group, an employer-sponsored organization dedicated to hospital safety and transparency. His book Catastrophic Care was published by Knopf in January 2013. Goldhill graduated from Harvard University with a BA degree in history and holds an MA degree in history from New York University. Judith Hibbard, DrPH, is a Senior Researcher and Professor Emerita at the University of Oregon. During the past 30 years she has focused her research on consumer choices and behavior in health care. She has a particular interest in testing approaches that give consumers and patients more knowledge and control over their health and health care. Her studies examine such topics as how consumers understand and use health care information, how health literacy affects choices, enrollee behavior within high-deductible health plans, and assessments of patient and consumer activation. Dr. Hibbard is the lead author of the Patient Activation Measure (PAM). The PAM measures an individual’s knowledge and skill for self-management. The measure is being used around the world by researchers and practitioners. Dr. Hibbard advises many health care organizations, foundations, and initiatives. She has served on several advisory panels and commissions, including the National Advisory Counsel for Agency for Healthcare Research and Quality, the National Health Care Quality Forum, United Health Group Advisory Panel, and National Advisory Council for the Robert Wood Johnson Foundation’s Aligning Forces for Quality Initiative. She is the author of more than 150 peer-reviewed publications. Her recent work appears in issues of Health Affairs, Medical Care, and Health Services Research. Dr. Hibbard holds a master’s degree in Public Health from the University of California, Los Angeles, and her doctoral degree is from the School of Public Health at the University of California, Berkeley. She is recognized as an international expert on consumerism in health care and is frequently invited to speak at national and international health conferences. 185

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Eric Holmboe, MD, a board certified internist, is Chief Medical Officer and Senior Vice President of the American Board of Internal Medicine (ABIM) and the ABIM Foundation. He is also Professor Adjunct of Medicine at Yale University and Adjunct Professor at the Uniformed Services University of the Health Sciences. Prior to joining ABIM, Dr. Holmboe was Associate Program Director, Yale Primary Care Internal Medicine Residency Program, and Director of Student Clinical Assessment, Yale School of Medicine. Before joining Yale, he was Division Chief of General Internal Medicine at the National Naval Medical Center. Dr. Holmboe’s research interests include interventions to improve quality of care and methods in the evaluation of clinical competence. A frequently requested speaker, he is the author of more than 100 peer- reviewed articles in professional journals, including Annals of Internal Medicine, Journal of General Internal Medicine, and Journal of the American Medical Association. Dr. Holmboe is a fellow of the American College of Physicians and an honorary fellow of the Royal College of Physicians in London. Dr. Holmboe is a graduate of Franklin and Marshall College and the University of Rochester School of Medicine. He completed his residency and chief residency at Yale-New Haven Hospital, and was a Robert Wood Johnson Foundation Clinical Scholar at Yale University. Sherrie H. Kaplan, PhD, MPH, is the Assistant Vice Chancellor for Healthcare Measurement and Evaluation, Professor of Medicine, University of California, Irvine (UCI), School of Medicine and Executive Co-Director, Center for Health Policy Research, UCI. She came to UCI in 2003 from Tufts University School of Medicine and the Harvard School of Public Health. Dr. Kaplan received her undergraduate, MPH, MSPH, and PhD from the University of California, Los Angeles, the latter in a joint program between public health and measurement psychology. In her distinguished career as a leading social scientist in medicine, Dr. Kaplan has pioneered a number of areas of research. She has done ground breaking research demonstrating that patients can be taught to participate effectively in medical decisions with positive effects on patients’ health outcomes. Her work on the application of psychometric techniques to the assessment of performance of varying levels of the health care system, from health care organizations to individual physicians, has made her a national expert on this current and controversial topic. Well known for her work in the development of measures of the quality of technical and interpersonal care, health status and quality of life, and heterogeneity of treatment effects, particularly for vulnerable populations, she is now working on a variety of innovative projects, including the use of community-based minority “coaches” to train patients to participate effectively in chronic disease care and reduce disparities in health and health care. Dr. Kaplan was also a member of the Institute of Medicine committee that generated the report Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Nancy Kass, ScD, is the Phoebe R. Berman Professor of Bioethics and Public Health, in the Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, and Deputy Director for Public Health in the Berman Institute of Bioethics. In 2009- 2010, Dr. Kass was based in Geneva, Switzerland, where she was working with the World Health Organization Ethics Review Committee Secretariat. Dr. Kass received her BA from Stanford University, completed doctoral training in health policy from the Johns Hopkins Bloomberg School of Public Health, and was awarded a National Research Service Award to complete a postdoctoral fellowship in bioethics at the Kennedy Institute of Ethics, Georgetown University. Dr. Kass conducts empirical work in bioethics and health policy. Her publications are 186

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primarily in the field of U.S. and international research ethics, HIV/AIDS ethics policy, public health ethics, and ethics of public health preparedness. She is co-editor of HIV, AIDS and Childbearing: Public Policy, Private Lives (Oxford University Press, 1996). Dr. Kass co-chaired the National Cancer Institute (NCI) Committee to develop Recommendations for Informed Consent Documents for Cancer Clinical Trials, and served on the NCI’s central institutional review board. She has served as consultant to the President’s Advisory Committee on Human Radiation Experiments, to the National Bioethics Advisory Commission, and to the National Academy of Sciences. Current research projects examine ethics for a learning health care system, including quality improvement and comparative effectiveness, informed consent in randomized trials, ethics issues that arise in international health research, and ethics and public health preparedness. Dr. Kass teaches the Bloomberg School of Public Health’s course on U.S. and International Research Ethics and Integrity, is the director of the School’s PhD program in bioethics and health policy, and is the director of the Johns Hopkins Fogarty African Bioethics Training Program. Dr. Kass is an elected member of the Institute of Medicine and a fellow of the Hastings Center. Gary Langer is the founder and president of Langer Research Associates and is an internationally recognized public opinion researcher with expertise in analysis of political, policy, economic, and social attitudes, questionnaire design, data interpretation, survey methodology, and survey management. With more than 25 years in the field, including a long tenure as director of polling at ABC News, Langer has overseen and analyzed more than 750 attitudinal surveys on a broad range of topics. Langer’s current work includes a 3-year series of surveys on patient engagement among low-income Californians for Blue Shield of California Foundation, research into attitudes on long-term care for The SCAN Foundation, and a national survey on prescription drug adherence for the National Community Pharmacists Association. He and his staff also are in the midst of a 5-year evaluation of community development programming in Bangladesh, as well as producing ongoing ABC News/Washington Post polls and a weekly consumer confidence survey for Bloomberg LP. Langer has won two Emmy awards and received nine Emmy nominations—including the first and only to cite public opinion polls—and was honored with the 2010 Policy Impact Award of the American Association for Public Opinion Research (AAPOR) for a 6-year series of surveys in Afghanistan and Iraq, described in AAPOR’s citation as “a stellar example of high-impact public opinion polling at its finest.” He’s a two-time winner of the University of Iowa-Gallup Award for Excellent Journalism Using Polls, produced a pair of ABC News polls recognized by the Excellence in Media Coverage of Polls Award from the National Council on Public Polls, and shared a DuPont-Columbia Award for ABC’s 9/11 coverage. Langer created ABC’s industry-leading poll standards and vetting operation and has advanced disclosure initiatives through professional organizations. He’s a frequent speaker, writer, and commentator on the meaning and measurement of public opinion, and has authored or co-authored nearly 30 scholarly papers on the subject. Langer is a member of the Board of Directors of the Roper Center for Public Opinion Research, a trustee of the National Council on Public Polls, and past president of the New York chapter of the AAPOR. Alice Leiter serves as Policy Counsel for the Center for Democracy & Technology’s Health Privacy Project. Her work focuses on developing policies for the advancement, adoption, and implementation of health information technology and electronic health information exchange to 187

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improve health care. Ms. Leiter earned her JD from the Georgetown University Law Center in 2007, and while in law school spent a summer working in the general counsel’s office at the National Institutes of Health. She spent 3 years as an associate in the Health and Privacy & Information Management practice groups at the law firm Hogan Lovells (formerly Hogan and Hartson) before joining the National Partnership for Women & Families, where she was the director of health information technology policy. In this capacity she served as a consumer representative on the Privacy and Security Tiger Team, a subgroup of the Health Information Technology Policy Committee, a federal advisory committee established in the American Recovery and Reinvestment Act of 2009. She also chaired the Operations Workgroup of Query Health, an initiative of the Office of the National Coordinator for Health Information Technology’s Standards & Interoperability Framework. Ms. Leiter earned a BA in Human Biology from Stanford University in 2002. Grace A. Lin, MD, MAS, is Assistant Professor of Medicine at the Philip R. Lee Institute for Health Policy Studies at the University of California, San Francisco (UCSF). Her research agenda focuses on resource utilization, appropriateness of care, shared decision making, and measuring the quality of the decision-making process, particularly in cardiology. She is also practices general internal medicine, as well as being actively involved in teaching medical students and residents at UCSF. Dr. Lin’s current research projects focus on improving quality of care through helping patients and physicians make high-quality decisions that are reflective of both evidence from the literature and the patient’s individual values. She is leading efforts to examine how physicians and patients make decisions about treatment for stable coronary artery disease, to investigate the effects of implementing patient decision aids into primary care practice, and to develop a metric that can be used to assess the quality of decision making in patients with cardiac disease. She has published both quantitative and qualitative research in peer-reviewed journals including JAMA and Health Affairs, as well as JAMA Internal Medicine, where she also serves on the editorial board. Dr. Lin received her MD from the University of Michigan and a master’s of Advanced Studies in Clinical Research from UCSF. She has received a Young Investigator Award and a career development award from the American Heart Association for her work examining the appropriateness of care in patients with coronary artery disease. Her work is currently funded by grants from the Agency for Healthcare Research and Quality and the Informed Medical Decisions Foundation. Evette Ludman, PhD, is a psychologist and Senior Research Associate at Group Health Research Institute, Affiliate Associate Professor in the Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine, and Affiliate Investigator at the Fred Hutchinson Cancer Research Center. Trained as a behavioral scientist, in her 20 years as a researcher she has built a diverse research portfolio focusing on designing and evaluating innovative health services interventions to promote health behavior change and improve the quality of care for common chronic physical and mental conditions. Her professional aspirations are to increase the person-centeredness and integration of care for mental health, behavioral, and medical concerns and to promote self-management support as a health care right and responsibility, “fomenting discontent” with business as usual. In the past several years she has evolved a growing interest in the interplay between behavioral science, the health care delivery system, and genetic information. She has broad experience in both quantitative and qualitative research and has more than 150 peer-reviewed publications as well as 2 books communicating 188

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health information to the lay public. Dr. Ludman received her BA from Brown University and her MS and PhD from the University of Oregon. Kenneth D. Mandl, MD, MPH, is an Associate Professor at Harvard Medical School (HMS) and the Louis Diamond Investigator at Children’s Hospital Boston, where he directs the Intelligent Health Laboratory within “CHIP,” the Children’s Hospital Informatics Program. He is faculty in the Harvard Medical School Center for Biomedical Informatics and affiliated faculty at the Harvard-Massachusetts Institute of Technology (MIT) Health Sciences and Technology. Mandl has pioneered and published extensively in the areas of personal health records and biosurveillance. Under a major HHS initiative, he co-leads the Substitutable Medical Apps, Reusable Technologies Platforms project, which seeks to create an “app store” for health. He co- directs a Centers for Disease Control Center of Excellence in Public Health Informatics working to define the role of online social networks in health care and public health. Recognized for his teaching and research, he has received the Barger Award for Excellence in Mentoring at Harvard Medical School and the Presidential Early Career Award for Scientists and Engineers, the highest honor bestowed by the U.S. government to outstanding scientists and engineers. He has been an advisor to two directors of the CDC, now chairs the Board of Scientific Counselors of the National Institutes of Health’s National Library of Medicine. Dr. Mandl has published more than 130 papers in the medical literature and has been elected to multiple honor societies, including the American Society for Clinical Investigation, the Society for Pediatric Research, the American College of Medical Informatics, and the American Pediatric Society. He leads two postdoctoral training programs in clinical and informatics research and directs the Population Health Track of the new master’s degree in Biomedical Informatics at HMS. Mandl is a faculty member in the HMS Center for Biomedical Informatics and in the Division of Health Sciences and Technology at Harvard and MIT. Peter Margolis, MD, PhD, is Professor of Pediatrics and Director of Research at the James M. Anderson Center for Health System Excellence at Cincinnati Children’s Hospital Medical Center. His work encompasses the application and study of quality improvement methods in a broad range of areas, including primary and sub-specialty care, communities and public health settings to improve the health outcomes of children, families, and communities. Dr. Margolis obtained his MD from New York University and his pediatric training at the University of Colorado, where he also served as Chief Resident in Pediatrics. He subsequently spent 3 years in the National Health Service Corps in Rochester, New York, and Los Angeles, California, before pursuing a fellowship in clinical epidemiology. He was a Robert Wood Johnson Foundation Clinical Scholar at the University of North Carolina (UNC) at Chapel Hill, where he also earned his PhD in Epidemiology. In 1994, Dr. Margolis was named a Robert Wood Johnson Foundation Generalist Faculty Scholar at UNC, where he also served on the faculty between 1991 and 2005. In 2006, Dr. Margolis joined Cincinnati Children’s Hospital Medical Center to create a new center focused on health care quality. Dr. Margolis has worked extensively with the certifying boards and specialty societies to assist them in designing programs that will enable physicians to meet new maintenance of certification requirements focused on systems thinking and performance in practice. He also devotes considerable time to teaching quality improvement methods. He is principle investigator of an NIH Roadmap transformative research grant on redesigning systems for chronic illness care. 189

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J. Michael McGinnis, MD, MA, MPP, is a physician, epidemiologist, and long-time contributor to national and international health programs and policy. An elected Member of the Institute of Medicine (IOM) of the National Academies, he has since 2005 also served as IOM Senior Scholar and Executive Director of the IOM Roundtable on Value & Science-Driven Health Care. He founded and stewards the IOM’s Learning Health System Initiative, and, in prior posts, also served as founding leader for the Robert Wood Johnson Foundation’s (RWJF’s) Health Group, the World Bank/European Commission’s Task Force for Health Reconstruction in Bosnia, and, in the U.S. government, the Office of Research Integrity, the Nutrition Policy Board, and the Office of Disease Prevention and Health Promotion. In the latter post, he held continuous policy responsibilities for prevention through four administrations (Presidents Carter, Reagan, Bush, Clinton), during which he conceived and launched a number of initiatives of ongoing policy importance, including the Healthy People national goals and objectives, the U.S. Preventive Services Task Force, the Dietary Guidelines for Americans, and development of the Ten Essential Services of Public Health. At RWJF, he founded the Health & Society Scholars program, the Young Epidemiology Scholars program, and the Active Living family of programs. Early in his career he served in India as epidemiologist and State Director for the World Health Organization’s Smallpox Eradication Program. Widely published, he has made foundational contributions to understanding the basic determinants of health (e.g., “Actual Causes of Death,” JAMA 270:18 [1993] and “The Case for More Active Policy Attention to Health Promotion,” Health Affairs 21:2 [2002]). National leadership awards include the Arthur Flemming Award, the Distinguished Service Award for public health leadership, the Health Leader of the Year Award, and the Public Health Hero Award. He has held visiting or adjunct professorships at George Washington; University of California, Los Angeles; Princeton; and Duke Universities. He is a graduate of the University of California at Berkeley, the UCLA School of Medicine, and the John F. Kennedy School of Government at Harvard University, and has been the graduating commencement speaker at each. Ekene Obi-Okoye is a University of California, San Francisco (UCSF) Breast Care Center premedical intern. Her current projects include studying the biology surrounding breast cancer recurrence, designing support programing for metastatic breast cancer patients at UCSF, and participating in the patient decision support program at the UCSF Breast Care Center. She is a recent graduate from Harvard, concentrating in History of Medicine with a secondary in African Studies. At Harvard, she was president of the largest student-run nonprofit on Harvard’s campus and served on the board of the Kuumba Singers of Harvard College, a choir dedicated to celebrating Black creativity and spirituality. Sally Okun, RN, MMHS, is the Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe in Cambridge, Massachusetts. She is responsible for the company’s patient advocacy initiatives; she participates and contributes to health policy discussions at the national and global level; and she is the company’s liaison with government and regulatory agencies. Ms. Okun joined the company in 2008 as the manager of Health Data Integrity and Patient Safety, overseeing the site’s medical ontology, including the curation of patient-reported health data and an ever-evolving patient vocabulary. Ms. Okun also developed and manages the PatientsLikeMe Drug Safety and Pharmacovigilance Platform. Prior to joining PatientsLikeMe, Ms. Okun, a registered nurse, practiced as a palliative and end-of-life care specialist. In addition, as an independent consultant she contributed to multiple clinical, research, and educational projects 190

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focused on palliative and end-of-life care for numerous clients including Brown University, Harvard Medical School, Massachusetts Department of Mental Health, Hospice Education Network, and the Robert Wood Johnson Foundation. Ms. Okun participates on the Institute of Medicine’s (IOM’s) Roundtable on Value & Science-Driven Health Care as a member of the Clinical Effectiveness Research Innovation Collaborative, the Evidence Communication Innovation Collaborative, and the Best Practices Innovation Collaborative. She is a contributing author to the IOM’s discussion papers Principles and Values for Team-Based Health Care and Communicating with Patients on Health Care Evidence. Ms. Okun serves on the Program Advisory Board of the Schwartz Center for Compassionate Care in Boston and has been a facilitator for Schwartz Center Rounds® at numerous locations around the country. Ms. Okun received her nursing diploma from the Hospital of St. Raphael School of Nursing; baccalaureate degree in Nursing from Southern Connecticut State University; and master’s degree from The Heller School for Social Policy & Management at Brandeis University. She completed study of Palliative Care and Ethics at Memorial Sloan-Kettering Cancer Center and was a fellow at the National Library of Medicine Program in Biomedical Informatics. Laura M. Phillips is a Patient Member of PatientsLikeMe. She was diagnosed in 1999 with multiple sclerosis (MS) after being hospitalized with a debilitating headache. Ms. Phillips was adopted and has no information about her birth mother’s family history. Her birth father has no known history of MS in his family. She joined PatientsLikeMe in March 2008 and found others who could answer the questions doctors really could not because they have never experienced MS. When comparing her experiences with others on PatientsLikeMe, Ms. Phillips has found that a good majority of patients have similar deficiencies, a fact that on their own they would not have looked into or followed up on with their doctors. As much as doctors and researchers know, there are numerous untold things they do not know. Every MS patient learns so much from their own MS and it will be from their collective experiences that they will help forge the way to a cure. Jill Plevinsky is currently a clinical research coordinator for the Inflammatory Bowel Disease Center at Boston Children’s Hospital and recently completed graduate work in child development at Tufts University. She was diagnosed with Crohn’s disease at age 7 and immediately became involved in awareness, education, and fundraising efforts through the Crohn’s and Colitis Foundation, for which she served as the Philadelphia/Delaware Valley Chapter’s first youth ambassador and the founding chair of the National Youth Leadership Council. She also serves as both a member of the leadership team for her local Camp Oasis program and the founding chair of the ImproveCareNow and Collaborative Chronic Care Network Patient Advisory Council. Her passion for the integration of new social technologies and pediatric patient access to social support has allowed her panelist and presentation opportunities at both national and international meetings held at Stanford University, Mayo Clinic, Massachusetts Institute of Technology, and Harvard Medical School, among others. Specifically, she hopes to become a clinical psychologist and continue to cultivate her interest in how having a chronic illness at a young age can affect this generation’s experience of social media. Through innovative research, social network analysis, and new technologies, she plans to help young people with chronic illness engage in their health care and benefit from the accessibility of social support and health information on the Internet. 191

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Holly Potter is vice president of Public Relations for Kaiser Permanente. She oversees efforts to promote the company’s story and achievements through both traditional and social media. In addition, her team is responsible for broad public relations, partnerships, and stakeholder management programs that help to build Kaiser Permanente’s reputation among opinion leaders and partners in the health, business, philanthropic, and advocacy communities. An experienced health communications strategist, she has held a variety of leadership positions directing a broad range of communications and advocacy campaigns. She brought to Kaiser Permanente a proven 15-year track record of award-winning public relations programs that influence stakeholders and shift public opinion. In her career, she has advised and partnered with senior executives in the nonprofit, government, and corporate sectors to advance policy and promote brand identity. PR News named Holly PR Team Leader of the Year in 2009 and she received an honorable mention in 2010 for Digital Communications Leader of the Year. Her team at Kaiser Permanente was named a 2010 Digital PR Team of the Year and a 2010 Nonprofit PR Team of the Year by PR News. Additionally, PR News named Kaiser Permanente a Top Place to Work in public relations in both 2009 and 2010. Prior to joining Kaiser Permanente, she ran HTPotter Communications, LLC, which served a variety of nonprofit and government clients in California and Washington, DC. Her former clients include National Campaign Against Youth Violence, California State PTA, Public Health Institute, Drug Policy Alliance, San Francisco Wellness Initiative, Santa Clara County Public Health Department, and the White House Council on Youth Violence. Barbra Rabson, MPH, has been the executive director of the Massachusetts Health Quality Partners (MHQP) since 1998. MHQP is a nationally recognized coalition of health care providers, plans, consumers, government agencies, academics, and purchasers working together to promote measurable improvement in the quality of health care services in Massachusetts. Under Ms. Rabson’s leadership, MHQP has become one of the most trusted names in performance measurement and public reporting of health care information in Massachusetts and in the nation. She has led MHQP to issue three first-in-the-nation statewide public releases of hospital and physician performance information, including the first collaboration in the nation with Consumer Reports to jointly release performance results on Massachusetts primary care physicians on a statewide patient experience survey. Ms. Rabson is the co-chair of the Greater Boston Aligning Forces for Quality Alliance. She is a founding member and past Board Chair of the Network for Regional Healthcare Improvement, a national network of regional health improvement collaborative. She also serves on the Board of the Massachusetts eHealth Collaborative and on the Mayor of Boston’s selection committee for the Mayoral Prize for Innovations in Primary Care. Ms. Rabson has a long track record for innovative collaboration. She received her MPH from Yale University and her undergraduate degree from Brandeis University. Shoshanna Sofaer, DrPH, is the Robert P. Luciano Professor of Health Care Policy at the School of Public Affairs, Baruch College, City University of New York (CUNY). She also serves on the faculty of the CUNY Graduate Center, in their doctoral program in public health. Dr. Sofaer’s major research and policy interests include patient engagement, patient-centered care, public deliberation to guide health policy, comparative quality and cost reporting for low literate and vulnerable populations, quality measurement, the Medicare program, improving health care for older adults and people with disabilities, tobacco control, the use of multi- stakeholder coalitions to improve population health and health care delivery, and health 192

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insurance coverage for low income people. A member of Academy Health’s Methods Council, Dr. Sofaer is widely recognized as an expert on the use of qualitative and mixed methods in health research and teaches, presents, and consults widely in that area. She has more than 60 publications in peer reviewed journals and has completed more than 40 research projects. Tresa Undem, MA, is a partner at PerryUndem Research & Communication. She leads public opinion research on a variety of health-related policy issues, including health reform implementation, delivery system reform, access, affordability, costs, and quality. Ms. Undem has conducted many communications projects related to health care costs and quality for clients such as the Robert Wood Johnson Foundation, the National Partnership for Women & Children, and the Institute of Medicine. She has briefed numerous state and federal policy makers on her work, including members of Congress, White House staff, Secretary Sebelius, and Centers for Medicare & Medicaid Services leadership. Tresa holds a master’s degree from the Annenberg School for Communication at the University of Pennsylvania. She is a member of the American Association of Public Opinion Research, and has been a reviewer, presenter, and discussant at its national conferences. Kevin Volpp, MD, PhD, is the founding Director of the Center for Health Incentives and Behavioral Economics at the Leonard Davis Institute (CHIBE LDI), one of two National Institutes of Health–funded Centers on Behavioral Economics and Health in the United States; Co-Director of the Penn Medicine Center for Innovation; and a Professor of Medicine at the University of Pennsylvania School of Medicine and Health Care Management at the Wharton School. He is a Scientific Advisory Board member of VALHealth, a behavioral economics consulting firm. Dr. Volpp’s research on the impact of financial and organizational incentives on health behavior and health outcomes work has been recognized by numerous awards, including the Presidential Early Career Award for Scientists and Engineers, an award presented at the White House as the highest honor given by the U.S. government to early career scientists; the Alice S. Hersh Investigator Award from AcademyHealth; Time magazine’s 2009 A-Z “Advances in Health” list for work on Incentives—letter “I”; the British Medical Journal Group Award for translating Research into Practice and the outstanding paper of the year from the Society of General Internal Medicine. He is a member of the editorial board of the Annals of Internal Medicine and an elected member of several honorary societies, including the Institute of Medicine of the National Academy of Sciences, the American Society of Clinical Investigation, and the Association of American Physicians. Dr. Volpp did his medical training at the University of Pennsylvania and Brigham and Women’s Hospital and has a PhD in Applied Economics and Managerial Science from the Wharton School. He is a board-certified general internist and practicing physician at the Philadelphia VA Medical Center. Jonathan Welch, MD, MSc, is an Instructor in Medicine at Harvard Medical School and a practicing emergency physician at the Brigham and Women’s Hospital in Boston. His work focuses on patient- and family-centered care, and he serves on his department’s patient and family advisory council. His writing on patient and family centered care has been featured in Health Affairs, Roll Call, the Washington Post, and the Chicago Tribune. Prior to joining the faculty, Dr. Welch completed his medical education at Harvard Medical School and his training in emergency medicine at the Harvard Affiliated Emergency Medicine Residency, a joint training program at the Brigham and Women’s Hospital, Massachusetts General Hospital, and 193

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Children’s Hospital Boston. He received his master’s degree in Health Policy at the London School of Economics, and additionally completed training in epidemiology and biostatistics at the Harvard School of Public Health. He was a Fulbright Scholar in Peru and a Harry S. Truman Scholar, and he has worked as a technical officer at the World Health Organization. Daniel B. Wolfson is Executive Vice President and COO of the American Board of Internal Medicine Foundation, where he leads the Choosing Wisely campaign, a multiyear effort to promote conversations between physicians and patients about utilizing the most appropriate tests and treatments and avoiding care that may be unnecessary by identifying five tests or procedures commonly used in their field, whose necessity should be questioned and discussed. Previously, Mr. Wolfson served for nearly two decades as the founding president and CEO of the Alliance of Community Health Plans (formerly The HMO Group), the nation’s leading association of not- for-profit and provider-sponsored health plans. During his tenure, Mr. Wolfson earned national recognition for spearheading the development of the Health Plan Employer Data and Information Set (HEDIS™), convening the RxHealthValue coalition to provide independent information on the pharmaceutical industry, and co-sponsoring with the American College of Physicians the journal Effective Clinical Practice. Previously, Mr. Wolfson was the Director of Planning and Research at the Fallon Community Health Plan. During that time, he led the product development team that launched the nation’s first Medicare risk contract with the Health Care Financing Administration. Mr. Wolfson received his master’s degree in Health Sciences Administration from the University of Michigan, School of Public Health. Prior to graduate school, Mr. Wolfson worked in the Social Services Department of Massachusetts General Hospital, counseling and discharge planning for spinal cord patients, amputees, and stroke patients. Kelly Young received her Bachelor of Arts in Psychology at George Mason University. In 2006, she was diagnosed with rheumatoid arthritis (RA), after years of periodic symptoms. She has worked for 4 years to provide ways for patients to be better informed and have a greater voice in their health care. In 2011, she received the WebMD National Health Hero award. Through her writing, speaking, and use of social media, she has built a more accurate awareness of RA geared toward the public and medical community; created ways to empower RA patients to advocate for improved diagnosis and treatment; and brought recognition and visibility to the RA patient journey. In 2009, Ms. Young created RAwarrior.com, a comprehensive website about RA of about 700 pages and the hub of one of the largest and most vibrant patient communities online. She also writes periodically for other newsletters and websites. Ms. Young is the founding president of the Rheumatoid Patient Foundation, the first nonprofit that exists solely to improve the lives of rheumatoid patients. Ms. Young serves on the Mayo Clinic Center for Social Media Advisory Board. She has participated as a patient advocate with the Food and Drug Administration, Patient-Centered Outcomes Research Institute, U.S. Department of Health and Human Services Office of the National Coordinator for Health Information Technology, and other organizations. There are more than 20,000 connections on her highly interactive Facebook page. She created and moderates the weekly Twitter chat on rheumatology topics, which can be followed with the hashtag she created: #rheum, used by large numbers of patients and caregivers as well as medical and industry professionals to communicate about rheumatology topics. 194

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Margot Zarin-Pass is a first-year medical student at University of California, San Francisco (UCSF). She was previously a premedical intern at the UCSF Breast Care Center. There, she provided decision support services to patients and conducted patient engagement research. 195

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