Stephen Arcona, PhD, MA
Executive Director, Outcomes Research Methods & Analytics, Department of HealthEconomics and Outcomes Research, Novartis Pharmaceuticals Corporation
Stephen Arcona is the Executive Director of Outcomes Research Methods & Analytics, Department of Health Economics and Outcomes Research at Novartis Pharmaceuticals Corporation. His research interests in patient activation and shared decision making are motivated by his experience as a father caring for a son who is now 13 years post cardiac transplant. He has 15 years of experience conducting clinical outcomes and health services research in organ transplantation, neuroscience, and cardiovascular disease. Prior to joining Novartis, he was the director of the Research Institute at St. Luke’s Hospital and Health Network in Bethlehem, PA, where he designed and conducted clinical outcomes studies, trauma registry research, and clinical performance improvement studies. He holds a MA in Rehabilitation Administration and Counseling from Southern Illinois University and a PhD in Health Policy and Administration from Pennsylvania State University. He is a member of the PCORI Advisory Panel on Patient Engagement.
Founder, Pulse + Signal
Andre Blackman is an influential agent of change and innovation within the health community. He is passionate about the intersection of media, technology, and useful innovative concepts as they relate to the improvement of healthcare. Through his consulting firm, Pulse + Signal, he aims to equip a new generation of problem-solvers through strategic digital public relations and personal branding for health innovators. He has been involved in traditional and digital campaigns for the Centers for Disease Control and the National Institutes of Health, focused on areas such as disease informatics, HIV/AIDS, and diabetes. He is a noted voice on digital communications with the US Department of Health and Human Services as well as serving as a mentor for health technology startups.
Elizabeth Gross Cohn, DNSc, RN
Assistant Professor, Columbia University School of Nursing (CUSON)
Elizabeth Gross Cohn is a community-based nurse researcher and Robert Wood Johnson Nurse Faculty Scholar. Her research focuses on engagement of under-represented, vulnerable and ‘easy-to-miss’ populations. She specifically seeks to explore how researchers can use collaborative methods to connect communities and improve health. She has worked for a decade in the urban faith-based community of Harlem, demonstrating how churches interested in improving the health of their congregants can drive research design, process, implementation and dissemination. Her most current work includes the use of public health genomics as a means to reduce health disparities. Her work is funded by the Centers for Disease Control and Prevention, the Robert Wood Johnson Foundation, and several units within the National Institutes of Health.
Jessie Gruman, PhD
President, Center for Advancing Health
Jessie Gruman is President and Founder of the Center for Advancing Health, a nonpartisan, Washington-based policy institute which, since 1992, has been supported by foundations and individuals to work on people’s engagement in their health care from the patient perspective. She draws on her own experience of treatment for four cancer diagnoses, patient interviews, caregiver surveys, and peer-reviewed research to describe and advocate for policies and practices to overcome the challenges people face in finding good care and getting the most from it. Gruman is on the faculty of The George Washington University. She is the author of The Experience of the American Patient: Risk, Trust and Choice (Health Behavior Media, 2009); Behavior Matters (Health Behavior Media, 2008) and AfterShock: What to Do When the Doctor Gives You – or Someone You Love – a Devastating Diagnosis.
President and CEO of the National Alliance for Caregiving (NAC)
Gail Hunt is the President and CEO of the National Alliance for Caregiving, a non-profit coalition dedicated to conducting research and developing national programs for family caregivers and the professionals who serve them. Prior to heading NAC, as president of her own aging services consulting firm for 14 years, she conducted corporate eldercare research for the National Institute on Aging and the Social Security Administration, developed training for caregivers with AARP and the American Occupational Therapy Association, and designed a corporate eldercare program for the Employee Assistance Professional Association. Prior to having her own firm, she was a Senior Manager in charge of human services for the Washington, DC, office of KPMG Peat Marwick. She is a member of PCORI’s Board of Governors.
Richard Kuntz, MD, MSc
Senior Vice President and Chief Scientific, Clinical, and Regulatory Officer, Medtronic, Inc.
Richard Kuntz is Senior Vice President and Chief Scientific, Clinical, and Regulatory Officer of Medtronic, Inc. in Minneapolis, MN. Prior to joining Medtronic, he was the Founder and Chief Scientific Officer of the Harvard Clinical Research Institute, a university-based contract research organization which coordinates National Institutes of Health and industry clinical trials with the United States Food and Drug Administration. His major interests are traditional and alternative clinical trial design and biostatistics. He also served as Associate Professor of Medicine at Harvard Medical School, Chief of the Division of Clinical Biometrics, and an interventional cardiologist in the division of cardiovascular diseases at the Brigham and Women’s Hospital in Boston. He is a member of PCORI's Board of Governors.
Melanie A. Nix, MBA
Co-founder, Breast Cancer Comfort Site
Melanie A. Nix is co-founder of Breast Cancer Comfort Site, a virtual wellspring where breast cancer patients and survivors can gain nourishment and guidance through their metamorphosis. She is a fifth generation breast cancer survivor and her over 20 year health and wellness advocacy began as a founding member of Breast Cancer Resource Committee and SASSi™ (Sisters Accessing Skills for Survival and Intervention). She works to reduce breast cancer disparities, advance research funding, eradicate breast cancer and improve overall healthcare outcomes. An author, blogger and public speaker, she shares lessons on preserving moxie and being indefatigable in the face of devastation. She holds a BA from the University of Virginia and a MBA from the University of Maryland. She is a member of the PCORI Advisory Panel on Patient Engagement.
Abdul Shaikh, PhD, MHSc
Program Director, National Cancer Institute Health Communication and Informatics Research Branch
Abdul Shaikh specializes in advancing research and technology-related initiatives in behavioral informatics, data science, and open innovation. He has led and served on several technology advisory groups and public-private partnerships addressing challenges in translational science, visualizing complex health data, and open innovation for cancer control, and his team’s work has been recognized by the US Department of Health and Human Services’ leadership for advancing public sector innovation. A seasoned presenter and author, his responsibilities include management of a population health research portfolio and the Division’s Small Business Innovation Research (SBIR) program, advancing federal innovation efforts, and thought leadership for big data and evidence-based technologies for population health.
Mary Tinetti, MD
Gladys Phillips Crofoot Professor of Medicine (Geriatrics), Epidemiology, and Public Health at Yale School of Medicine.
Dr. Tinetti is the Gladys Phillips Crofoot Professor of Medicine (Geriatrics), Epidemiology, and Public Health at Yale University. She also serves as Chief of Geriatrics and Director for the Hartford Center of Excellence in Aging at Yale School of Medicine. She was elected to the Institute of Medicine, and in 2009 was named as a MacArthur Fellow. Her research interests include fall prevention in older adults, the health effects of multiple chronic conditions, determining the relative and absolute benefits versus risks of different treatments, and identifying cross-disease health outcomes appropriate for measuring health outcomes for older adults. She is a member of the PCORI Methodology Committee.
President, Rheumatoid Patient Foundation, and Creator of RAwarrior.com
Kelly Young has received national recognition for providing ways for patients to be better informed and have a greater voice in their healthcare. In 2009, she created a comprehensive website about Rheumatoid Arthritis (RA), beginning a large, vibrant patient community, and nearly 22,000 people connect through her busy Facebook page. Kelly founded the Rheumatoid Patient Foundation, a non-profit organization working to improve the lives of Rheumatoid patients through education, research, and advocacy. She has written over 800 articles about RA, including publications in medical magazines, journals, and newsletters. She serves as an advisor to Mayo Clinic Center for Social Media, participates as a patient advocate with various agencies, and consults for industry providing insights on the patient experience. She has spoken at PCORI Patient Engagement events and is involved in a PCORI Pilot Project. Kelly is a mother of five who has home-schooled for eighteen years, with her children earning academic scholarships and other awards.