Plenary HallPart 4: Involving patients in research, the PCORI story
Plenary HallPart 4: Involving patients in research, the PCORI story
Director, Patient Engagement, PCORI
Deputy Executive Director, Chief Officer for Engagement, PCORI
Director of Communication, PCORI
Senior Investigator, Palo Alto Medical Foundation Research Institute
Breast cancer survivor and patient/reviewer mentor, PCORI
How can we jump-start research by involving patients in the process? How can investigators work with patients to achieve more robust science and improve health outcomes? What outcomes are important to... Read more
How can we jump-start research by involving patients in the process? How can investigators work with patients to achieve more robust science and improve health outcomes? What outcomes are important to patients? The Patient Centered Outcomes Research Institute (PCORI) will help answers some of these questions in this session.
Susan Sheridan, M.B.A., M.I.M., is the Director of Patient Engagement at the Patient-Centered Outcomes Research Institute (PCORI). She is responsible for creating networks and engaging patients across the nation to provide broad-based input on the development and execution of PCORI’s research. Sheridan became involved in patient safety after her family experienced two serious medical system failures.
Sheridan is Co-Founder and a Past President of Parents of Infants and Children with Kernicterus, which works in partnership with private and public health agencies to eradicate kernicterus. In 2003, she co-founded Consumers Advancing Patient Safety (CAPS), a non-profit organization that seeks a safe, compassionate, and just health care system through proactive partnership between consumers and providers of care. Sheridan served as President of CAPS from 2003 to 2010. From 2004 to 2011, she led the World Health Organization’s Patients for Patient Safety initiative, which embraces the collective wisdom of the patient, patient empowerment, and patient-centered care. Sheridan received her bachelor’s degree from Albion College and a Master of International Management and Master of Business Administration from the Thunderbird School of Global Management.
Anne Beale, MD, MPH, a pediatrician and public health specialist, has devoted her career to providing access to high-quality health care. As PCORI’s first Chief Officer for Engagement, Dr. Beal is charged with ensuring that the voices of patients and other stakeholders are reflected in our growing research portfolio. In her role as Deputy Executive Director, she helps to see that PCORI works efficiently and effectively to carry out its mission as the nation’s largest research institute focused on patient-centered outcomes research.
Dr. Beal joined PCORI from the Aetna Foundation, the independent charitable and philanthropic arm of Aetna Inc. As President, she led the Foundation’s work on improving health care in the United States, particularly for vulnerable patient groups.
Prior to her work at the Aetna Foundation, Dr. Beal was Assistant Vice President for the Program on Health Care Disparities at the Commonwealth Fund, a private foundation that aims to promote a high-performing health care system that achieves better access, improved quality, and greater efficiency, particularly for society’s most vulnerable, including low-income people, the uninsured, minority Americans, young children, and elderly adults.
Early in her career, Dr. Beal worked with a mobile medical unit project delivering health care services to children living in homeless shelters throughout New York City. She was also a health services researcher at the Center for Child and Adolescent Health Policy at Massachusetts General Hospital. In addition, she was Associate Director of the Multicultural Affairs Office of Massachusetts General Hospital and attending pediatrician within the division of general pediatrics.
In addition to publishing in the peer-reviewed medical literature, Dr. Beal is also the author of The Black Parenting Book: Caring for Our Children in the First Five Years and has been a pediatric commentator and medical correspondent for popular magazines and television shows. Dr. Beal holds a B.A. from Brown University, an M.D. from Cornell University Medical College, and an M.P.H. from Columbia University.
Bill Silberg is the Director of Communications for the Patient-Centered Outcomes Research Institute. He is responsible for developing and implementing PCORI’s strategic communications plan, managing media engagement, and assisting in the formation of strategies to broadly disseminate health information generated by PCORI-supported research. Silberg brings more than three decades of experience in communications and publishing to PCORI, and joined the Institute from Silberg Consulting and the American Journal of Preventive Medicine, where he was editor-at-large.
Previously, Silberg held positions as Vice President for Publishing and Communication at the New York Academy of Sciences, Senior Vice president for Communications and Publishing at the Commonwealth Fund, and Senior Vice President and Executive Editor at Medscape. He spent 13 years at the American Medical Association, holding numerous editorial positions, including web editor at the Journal of the American Medical Association. Silberg began his career as a reporter, editor, and eventually bureau manager at United Press International. He earned his bachelor’s degree in Natural Resources from Cornell University.
Ming Tai-Seale, PhD, MPH, is a senior investigator in the Palo Alto Medical Foundation Research Institute. Her researchintegrates perspectives and empirical methods from economics and communications research to the area of patient-physician engagement. For the last four years, she has studied patient centered care transformation, for patients with chronic conditions in particular, at Palo Alto Medical Foundation. Dr. Tai-Seale has won the 2008 Article-of-the-Year Award from AcademyHealth for work on patient-physician communication as well as major grants from the National Institute of Health and the Agency for Healthcare Research and Quality. She is the principle investigator of the project “Creating a Zone of Openness to Increase Patient-Centered Care” funded by PCORI. Dr. Tai-Seale earned her Ph.D. in Health Services with a cognate in economics from the University of California at Los Angeles, and her MPH from Emory University.
Sam Gordon built a career as a Financial Advisor before retiring three years ago; he now serves on the board of the Stevenson House and the Villages Program of Avenidas. He also finds time for travel and photography, among other interests. Sam and his wife of 30 years have a beautiful family, including 7 children and 4 grandchildren. A long term patient of the Palo Alto Medical Foundation, Sam became particularly interested in the physician-patient interface since being diagnosed with inoperable pancreatic cancer in August of 2012. He is pleased to contribute to making doctor-patient relationships more effective.
Diana Chingos, MS, MFA
Ms. Chingos, a survivor of early onset breast cancer, led the Cancer Survivorship Advisory Council at the University of Southern California from 1999 until 2013, representing patients on the Cancer Center’s Executive Committee. She serves as a Patient Advocate in Research on numerous breast cancer research studies, on the NCI’s Investigational Drugs and Patient Advocate Steering Committees and as an advisor to the NCI/NIEHS Breast Cancer Environmental Research Program. She also is a current IRB member. She earned a Masters Degree in Health Administration in 2010 and since 2012 has reviewed grants for PCORI and mentored new patient and stakeholder reviewers. Patient-centeredness in research, she says, “means the empowerment of patients and validated strategies and tools for the healthcare practitioners and systems caring for them.”