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Contributors
James Conway, MS, is senior vice president at the Institute for Healthcare Improvement (IHI). For 10 years, he served as executive vice president and chief operating officer of DFCI. Prior to that, he had a 27-year career at Children’s Hospital, Boston, in Radiology Administration, Finance, and as Assistant Hospital Director for Patient Care Services. His areas of expertise and interest include executive leadership, patient safety, change management, and patient/family-centered care.
Nancy Davenport-Ennis, BA, is president and chief executive officer of the National Patient Advocacy Foundation, a nonprofit organization designed to improve access to care through state and federal regulatory and policy initiatives. She also established, and is CEO of Patient Advocate Foundation, a national direct patient services non-profit organization.
Sarah Davis, JD, MPA, is associate director of the Center for Patient Partnerships at the University of Wisconsin, an interdisciplinary advocacy educational center of the Schools of Law, Medicine & Public Health, and Nursing. She teaches and develops curriculum in health advocacy, health care rights and responsibilities, and consumer issues in health systems and health care delivery.
Darren DeWalt, MD, MPH, is an assistant professor in the Division of General Internal Medicine and Clinical Epidemiology at UNC School of Medicine in Chapel Hill, North Carolina. He is a board-certified physician in pediatrics and internal medicine. DeWalt is co-investigator for 3 research grants on the impact of different interventions for low-literacy patients.
Robin DiMatteo, PhD, is Distinguished Professor of Psychology at the University of California-Riverside. Her research interests include physician-patient communication, the factors affecting patient adherence to medical treatment, and patient satisfaction with care. Her recent work focuses on ethnicity and income disparities in communication and the interpersonal aspects of medical treatment.
Nancy DiVenere is President of Parent to Parent USA, a national non-profit committed to assuring access and quality in parent to parent support for all families who have a child with special needs. She was the founder and served as Director of Parent to Parent of Vermont for 18 years. In 1998 she was recognized by the Robert Wood Johnson Foundation with a Community Health Leadership Award. Nancy’s work was inspired by the birth of her son, Brett, whose early years were compromised due to a birth injury.
Tom Ferguson, MD, a 15 year survivor of multiple myeloma, died in April 2006. Throughout his illness, however, he was highly active as: editor and publisher of The Ferguson Report, the industry newsletter of online health; the founder of the widely used DocTom’s website; and senior researcher for the Pew Internet and American Life Project. An advocate of self-help and self-care for more than 20 years, he founded the journal Medical Self-Care and organized the world’s first conferences on consumer health informatics.
Susan Frampton, PhD, is president of Planetree, a nonprofit organization that has developed a patient-centered model of care disseminated to over 125 members in the U.S., Canada and Europe. One of the editors and authors of Putting Patients First: Designing and Practicing Patient-Centered Care (Jossey-Bass, 2003), she is internationally known for her work in organizational culture change.
Barbara Frank, MPA, is cofounder of B&F Consulting in Warren, RI, an entity that helps make nursing homes better places to live and work. She has over 30 years of experience in national, state, and local long-term care and workforce development work. For 16 years, she directed policy and program work for the National Citizens’ Coalition for Nursing Home Reform. She is a co-author of Nursing Homes: Getting Good Care There (1996).
Martha (Meg) Gaines, JD, LLM, Martha (Meg) Gaines, JD, LLM, an ovarian cancer survivor, directs the Center for Patient Partnerships (www.patientpartnerships.org) at the University of Wisconsin. The Center trains future professionals of medicine, law, policy, industrial engineering, pharmacy etc. in a program where they provide advocacy services to patients with life threatening illnesses. Recipient of the ACS’ Lane Adams Quality of Life Award, and featured in the New York Times, Gaines speaks widely on consumer education and empowerment in health care. Publications include An Odyssey of Hope and Alchemy: Medical Mediation at Its Best. She teaches graduate courses in Consumer Issues in Health Systems and Health Care Delivery and Health Care Rights & Responsibilities.
Laura Gilpin, MFA, RN, died in February, 2007 of glioblastoma. For over 20 years, she was involved with Planetree, a nonprofit organization that has developed a patient-centered model of care disseminated to over 125 members in the U.S., Canada and Europe. She began as a staff nurse on the original Planetree Unit in San Francisco and served as Planetree’s first Education and Arts Coordinator. For many years, she served as a resource to all Planetree affiliates, providing support particularly in the areas of staff involvement and patient empowerment.
Carol Golin, MD, MPH, is an assistant professor in both the School of Medicine and the Department of Health Behavior and Health Education in the School of Public Health at the University of North Carolina at Chapel Hill. She studies the influence of patient-provider communication on health outcomes, particularly the effects of enhanced patient participation in medical decision-making for HIV/AIDS patients.
Rachel Grob, M.A., PhD, is associate dean of graduate studies at Sarah Lawrence College in Bronxville, NY, where she is also a faculty member with the Health Advocacy Master's Program, and Director of the Child Development Institute. Research interests include parenting, the social impact of genetic technologies, and how lay actors engage in health policy-making processes. Prior to moving into the academic setting full time in 2003, Grob was a practicing health advocate in public health and community-based roles.
Laura Hanson, MD, MPH, is associate professor in the Department of Medicine, School of Medicine, at UNC-Chapel Hill. She is board certified in internal medicine, geriatric medicine and palliative medicine. She practices in the UNC Geriatric Evaluation clinic and co-directs the UNC Palliative Care Program. Her teaching emphasizes the medical care of frail and dying patients, clinical ethics, and epidemiologic research methods. Research interests focus on health care decisions near the end of life.
Judith Hibbard, DrPH, is professor of Planning, Public Policy, and Management at the University of Oregon. Her research has focused 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 consumer driven health plans, and assessments of patient and consumer activation
Elma Holder, MSPH, was the primary founder of the National Citizens' Coalition for Nursing Home Reform (NCCNHR) in 1975,serving as executive director until 1995. The organization evolved from her advocacy work with Ralph Nader and the National Gray Panthers from 1970-74. She is still active in NCCNHR and the Pioneer Network, a group committed to person-centered long-term care for elders and serves as a volunteer nursing home ombudsman.
Marsha Hurst, PhD, is the director of the Graduate Program in Health Advocacy at Sarah Lawrence College. She teaches the history of healthcare, women and health, and health policy. She is the co-founder of the Westchester End of Life Coalition. Professional interests include development of cancer patient advocacy programs and research on women’s illness narratives.
Adina Kalet, MD, MPH, is associate professor of medicine at the New York University School of Medicine. Her work on physician training focuses on assessment of core clinical skills, especially communication abilities, developing faculty teaching skills, and professionalism. She has developed curricula for all levels of medical trainees and is currently heading the evaluation of a comprehensive web-based curriculum in predoctoral surgical education at NYU’s School of Medicine.
Carolyn Kalinowski Thorpe, PhD is an advanced doctoral student in the Department of Health Behavior and Health Education at UNC-Chapel Hill and a researcher at the Thurston Arthritis Research Center. Her research focuses on how social relationships with family members and health care providers influence patients’ adjustment to chronic illness.
Beth Lown, MD, is an internist at Mt. Auburn Hospital in Cambridge, MA, assistant professor of medicine at Harvard Medical School, and associate director of Harvard fellowships in medical education. She teaches learners across the spectrum of medical education about healthcare communication and relationships. She is past president of the American Academy on Communication in Healthcare (formerly the American Academy on Physician and Patient), and is actively involved in international efforts to integrate patients' voices and experiences into health professional education.
Margo Michaels, MPH, is the founder and executive director of the Education Network to Advance Cancer Clinical Trials, an organization working with community-based groups to improve patients’ access to clinical trials. Before that, she was education branch chief at the National Cancer Institute. Interests include public health program development and management, patient advocacy training, curriculum development, coalition building, and community outreach.
Alexis Moore, MPH, coordinates dissemination research in clinical and population sciences at the UNC Lineberger Comprehensive Cancer Center. Her interests include increasing adherence to cancer screening recommendations, especially among rural, minority and uninsured populations.
Julie Ginn Moretz, BA, is director of Family Services Development at the Medical College of Georgia Children’s Medical Center. Her initial involvement with the hospital was as a parent advocate. She helped design the national award-winning Children’s Medical Center and served on numerous hospital committees as a voice for patients and families. Since 1998, as Director, she has overseen five departments that support services for patients and families.
Virginia (Ginny) Morrison, JD, President of Collaboration Specialists, is a mediator with expertise in clinical research, mental health, prison medical care, and bioethics. She works with clinicians, leaders, and patients to use mediation principles for more effective patient safety initiatives and to generate patient-centered care. She is an advisor to Consumers Advancing Patient Safety and other national consumer organizations in their efforts to partner with clinicians in improving patient safety.
Laurie Norris, BA, is a writer, editor, and international communications consultant. She is the author of a history of the China Medical Board and has served as Managing Editor for Critical Issues in Global Health and for two books on global health leadership and management. Norris has also worked as Director of Communications for Catalyst, a national organization focused on work and family issues, and as Vice President for Communications for the American Heart Association/NYC Affiliate.
Clarence Pearson, MPH, a member of the Board of Directors for AARP, is former senior advisor to the World Health Organization Office at the United Nations. He was president and CEO of the National Center for Health Education, and vice president, Health and Safety Education, for Met Life. Pearson served a two-year White House assignment for a Presidential Commission on Health. Along with C. Everett Koop, Pearson is co-editor of the Critical Issues in Global Health series.
Michael Pignone, MD, MPH, is chief and associate professor in the Division of General Medicine and Clinical Epidemiology at UNC’s School of Medicine. He researches chronic disease prevention and physician–patient communication about risk in primary care settings. Areas of interest include colorectal cancer screening and heart disease prevention.
Mark Renneker, MD, is a San-Francisco-based physician who, since 1988, has provided intensive, case-specific research and advocacy services to patients and families facing life-threatening and complex medical problems. He is a board-certified family physician and an associate clinical professor in the Department of Family and Community Medicine at the University of California-San Francisco.
Thomas Ricketts, PhD, is professor of Health Policy and Administration at UNC-Chapel Hill and director of the Health Policy Analysis Unit and the Program for Rural Health, also at UNC. His research focuses on policy making in health care, especially for rural and underserved populations, and the development of programs to improve healthcare access. He was founding director of the North Carolina Rural Health Research and Policy Analysis Center which he led for 12 years until 2000.
William Roper, MD, MPH, is dean of the School of Medicine, vice chancellor for medical affairs, and CEO of the UNC Health Care System at the University of North Carolina at Chapel Hill (UNC). From 1997 until March 2004, he was dean of the School of Public Health at UNC. Before coming to Chapel Hill in 1997, Roper was senior vice president of Prudential HealthCare. Prior to that, Roper was director of the Centers for Disease Control and Prevention (CDC), served on the senior White House staff, and was administrator of the Health Care Financing Administration (responsible for Medicare and Medicaid).
Beth Seyda, BS, is co-founder and executive director of Compassionate Passages, a nonprofit group whose mission is to advocate, educate and conduct research that assists families, healthcare providers and communities during and after a child's illness or death. Seyda helped found the organization after the birth and death of her son. She co-produced an award-winning educational film, When a Child is Dying (2001) and co-authored The Supportive Care Handbook (2001).
Terri Shelton, PhD, is professor of Psychology and director of the Center for Youth, Family, and Community Partnerships at the University of North Carolina at Greensboro. She is also on the Board of Directors for the Institute for Family-Centered Care. She has over 25 years of experience in direct clinical intervention, research, teaching and training for children with developmental or behavioral challenges and their families as well as experience in leading large scale, community-based research with children at risk. Terri was co-author of the landmark publication, Family-Centered Care for Children with Special Health Care Needs.
Pam Silberman, PhD, JD, a lawyer and health policy specialist, is associate director for policy analysis at the Cecil G. Sheps Center for Health Services Research at UNC-Chapel Hill. She also has an appointment in the UNC School of Public Health’s Department of Health Policy and Administration. She recently assumed the presidency of the North Carolina Institute of Medicine. She specializes in managed care, the uninsured, Medicaid, and state child health insurance programs and has recent publications in Health Affairs and other journals.
Pat Sodomka, MHA, is senior vice president, Patient- and Family-Centered care at MCG Health, Inc., the health system for the Medical College of Georgia and Director of the Center for Patient- and Family-Centered Care. Since 1992 she has been implementing patient- and family-centered care programs throughout the Health System. Under her leadership, the Children’s Medical Center received the top architectural design award from Modern Healthcare in 1997 and 2000. The Medical Center’s patient satisfaction level has been rated by Press Ganey Associates among the highest in childrens’ hospitals in the U.S.
Gwendolyn Stritter, MD, is board-certified in anesthesiology with a subspeciality certification in pain medicine. She served as director of the Pain Management Unit at Kaiser San Jose, California, for ten years. In 2000, she left that group to start a full-time practice of case-specific research and advocacy for people with difficult health problems such as cancer and chronic pain. She is particularly interested in advocating on behalf of those with breast cancer.
Carolyn Thorpe, PhD, is a post-doctoral research fellow at the Center for Health Services Research in Primary Care at the Durham Veterans Affairs Medical Center. Her research focuses on illness self-management and psychological adjustment among adults living with chronic illness, particularly how relationships with family members and health care providers influence these outcomes. She has also conducted research on patient-provider communication and barriers to utilization of health services among elderly and chronically ill populations.
Nancy Tomes, PhD, is professor of history at Stony Brook University. She is the author of two books on the history of psychiatry. More recently, she published The Gospel of Germs: Men, Women and the Microbe in American Life (1998), which won both the History of Science Society’s Davis Prize and the American Association for the History of Medicine’s Welch Medal. Now she is completing a book titled A Patient Paradox: The Making of the Modern Health Consumer, 1930-1980, on patients’ “proper” role in the modern health care economy.
Nicola Truppin, JD, coordinates the health care practice of The Mediation Group in Brookline, MA and is founder of Health Navigator Partners, LLC. She managed Member/Provider Appeals and Grievances at Tufts Health Plan, where she ensured that staff merged appeals and grievance processes with conflict management principles. She trained in health care negotiation and conflict resolution at the Harvard School of Public Health. As a health care attorney, she had a practice devoted to negotiating medication treatment plans for mentally retarded or mentally ill adults.
Laura Weil, MA, is director of patient representatives for Beth Israel Medical Center, an academic hospital system in New York City, where she is responsible for resolution, tracking, and reporting of patients’ grievances, and recommendation of delivery of care modifications intended to improve satisfaction. She is also a member of the faculty of Sarah Lawrence College’s Master’s Program in Health Advocacy.
Gary Winzelberg, MD MPH, is an Assistant Professor in the Division of Geriatric Medicine at the University of North Carolina School of Medicine. Dr. Winzelberg graduated from Dartmouth Medical School in 1996. He trained in Internal Medicine at Beth Israel Hospital in Boston, and completed fellowships in Geriatric Medicine at Harvard Medical School and in the Robert Wood Johnson Clinical Scholars Program at the University of Washington. In 2002 he received an MPH degree from the University of Washington School of Public Health. Dr. Winzelberg is board certified in Geriatric Medicine and Hospice & Palliative Medicine. His research focuses on identifying barriers to improving end-of-life care for older adults from physicians’ perspectives, and developing a framework to promote high quality physician-family end-of-life care communication. His educational activities focus on improving physician end-of-life care communication skills particularly with families of incapacitated patients.
Kathy Zoppi, PhD, has taught behavioral science and communication to family medicine residents and faculty at the Indiana University Department of Family Medicine since 1986. Research interests include patient-physician communication, communication and health disparities, care of underserved patients, and the well-being of medical students and residents.
