January 20, 2004

In November 2003, Health Behavior and Health Education (HBHE) sponsored a path-breaking, two-day national summit focused on patient advocacy. Patients, Families and Health Care Providers: Partners in Decision-Making, Advocates in Health Care brought together over 40 of the nation’s foremost patient advocacy organizations and researchers as well as legal experts, policy-makers, and health-care professionals. Together, this diverse group of professionals began work on:(1) developing a national research agenda to create an easily navigable patient-centered health care system with informed patients at the core; and (2) identifying immediate, substantive action steps the patient advocacy movement could take to improve patient-doctor (and health care team) communication using all the information-seeking and decision-sharing tools now available.

Patient advocacy previously constituted uncharted territory in HBHE practice and research. Yet the Department accepted this unexpected opportunity in 2002 after receiving a substantial donation from Clarence Pearson (MPH 1951) and his wife Laurie Norris to honor the memory of Clarence’s son, Scott. Scott Pearson died in 2001 from malignant melanoma, just before his 39th birthday. In addition to the devastating effects of his illness, Scott and his family suffered unnecessarily from the effects of poor communication among his multiple health care providers. His 39 physicians did not communicate well with each other, with the patient and his family, or with other providers. Records went missing, tests were repeated multiple times, and the patient was strongly discouraged from participating in his own health care decision-making.

In an effort to prevent future ordeals like their own, Clarence and Laurie asked HBHE to use their donation to develop a program on patient-provider communication and advocacy. As a graduate of the Department, Clarence Person was certain that HBHE had the appropriate perspective for addressing the organization- and systems-level issues associated with health communication. Ultimately, HBHE agreed, believing that public health could play a significant role in developing patient-centered health communication systems. Department chair Jo Anne Earp agreed to organize the conference, and with additional sponsorship from GlaxoSmithKline, the Robert Wood Johnson Foundation, Metropolitan Life, UNC Hospitals, and the UNC School of Public Health, HBHE was able to host the two-day event at the Carolina Inn in the heart of Chapel Hill.

Introductory talks by School of Public Health Dean, William Roper, and HBHE Chair, Jo Anne Earp helped frame the summit, together with lectures by three plenary speakers. Dr. Carolyn Clancy, director of the U.S. Agency for Healthcare Research and Quality, summarized the state of research regarding patient safety in her talk, “Patient Safety and Patient Advocacy,” and discussed possible ways that patient advocacy could help curb medical error. San Francisco-based physician Mark Renneker discussed lessons learned from his more than 15 years of providing intensive, case-specific research and advocacy services to patients and families facing life-threatening and complex medical problems. George Annas, Professor and Chair of the Department of Health Law, Bioethics and Human Rights of the Boston University School of Public Health, looked at patient advocacy from a legal perspective, specifically discussing his book, Rights of Patients. Originally published in 1975, this classic has just been updated and reissued by Southern Illinois University Press.

The three plenary talks, delivered at different points in the conference, offered a health care research perspective, a legal perspective, and a medical practice perspective. Together they helped frame the facilitated discussions that constituted the backbone of the conference.

Many summit participants have agreed to be involved with future patient advocacy efforts that evolve from the two-day event. Dr. Earp and her conference team are currently drawing up a report based on the summit.

Other participants in the Patient Advocacy Summit included: Gail Agrawal, associate dean for academic affairs and professor of law, the University of North Carolina at Chapel Hill; Scott Brown, internet consultant/information specialist, The Centers for Disease Control and Prevention (CDC); Elizabeth (Betsy) Clark, executive director, National Association of Social Workers; Margaret (Peggy) Decker Cohn, director (ret.), Family Ties, Pennsylvania State University; Holly D’Addurno, patient services manager, The Leukemia and Lymphoma Society, Eastern North Carolina Chapter; Nancy Davenport Ennis, president and CEO, National Patient Advocate Foundation; president and CEO, Patient Advocate Foundation Darren DeWalt, UNC School of Medicine, fellow, Robert Wood Johnson Clinical Scholars Program; Peggye Dilworth-Anderson, professor, Department of Health Policy and Administration, UNC at Chapel Hill; Ronald Epstein, professor of family medicine and psychiatry, the University of Rochester School of Medicine; Tom Ferguson, editor and publisher of The Ferguson Report and DocTom’s Website; Gilles Frydman, founder and director of the Association of Cancer Online Resources; Connie Ginsberg, executive director of Family Connection of South Carolina; Roxeanne Goeltz, air traffic controller and automation specialist, FAA; board member of the Patient and Family Advisory Council of the National Patient Safety Foundation; Carol Golin, research assistant professor, UNC School of Medicine and the UNC Department of Health Behavior and Health Education; Kathleen Hampton, director of patient advocacy, GlaxoSmithKline; Alice Hedt, director, National Long Term Care Ombudsman Resource Center; Carol Herbert, dean, Faculty of Medicine and Dentistry, the University of Western Ontario; Ruth Hoffman, executive director, Candlelighters Childhood Cancer Foundation; Charles Inlander, president, People’s Medical Society; Adina Kalet, assistant professor of clinical medicine, New York University School of Medicine; Arthur Levin, director, Center for Medical Consumers; Abbie Leibowitz, founder, CMO and executive vice president of Health Advocate, Inc. Beth Lown, assistant professor, Harvard Medical School; president, American Academy on Physician and Patient; Elizabeth McKinley, assistant professor of medicine and bioethics, Case Western School of Medicine; Priscilla Merryman, clinical director of medicine services, UNC Hospitals; Margo Michaels, branch chief, Public and Survivor Education, Office of Education and Special Initiatives, NCI Alexis Moore, coordinator for research-specific dissemination, Lineberger Comprehensive Cancer Center, UNC at Chapel Hill; Jill Moore, assistant professor of public law and government, UNC School of Government; Wayne Moore, director of advocacy planning, AARP Laurie Norris, writer, editor, and international communications consultant; Sharon O’Neill, development and management consultant, North Carolina Psychoanalytic Foundation; Elda Railey, cofounder, Research Advocacy Network; independent consultant; Herbert Reichlin, systems analyst and office automation consultant; author, Tilt the Health Care Odds in Your Favor; Barbara Rimer, alumni distinguished professor of Health Behavior and Health Education, UNC School of Public Health; deputy director of population sciences, Lineberger Comprehensive Cancer Center, UNC at Chapel Hill; Grayce Rund, consumer health information and advocacy coordinator, American Association of Retired Persons; Vincente Samaniego, congressional Hispanic caucus fellow, Office of the Secretary, Office of Minority Health; Beth Seyda, cofounder and president, Compassionate Passages, Inc.; Tina Shaban, coordinator of Patient and Family Resource Center, Lineberger Comprehensive Cancer Center, UNC at Chapel Hill; Julie Sweedler, manager of the Health Information Center, UNC Hospitals; James Tulsky, associate professor of medicine, Duke University; director of the Program on the Medical Encounter and Palliative Care, Durham VA Medical Center. Gina Upchurch, founder and director, Senior PHARMAssist. Charlene Voyce, researcher, policy analyst, and planning consultant, New Haven Public Schools and Yale University Child Study Center. Christine Williams, director, Office of Communications and Knowledge Transfer, Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services.

For further information please contact Elizabeth French either by phone at 919-966-9208 or by email at eafrench@email.unc.edu


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