The Evolution of Patient and Family Representatives

In our cover feature, Deborah Wachenheim tells the story of a grassroots effort in Massachusetts that resulted in a mandate for every hospital in the state to have a patient and family advisory council (PFAC). Now, five years after the mandate went into effect, PFACs are in use in many hospitals across the country. Deborah, who was involved in the Massachusetts movement, also describes experiences and lessons learned in two hospitals—an academic medical center and a community hospital.

With Deborah’s article top of mind, I‘ve been finding stories about patient and family advisors everywhere I turn.

In a presentation at this year’s annual conference of the American Society for Healthcare Risk Management (www.ashrm.org), Tanya Lord, PhD, described the unique role that laypeople can play as trained patient and family representatives on root cause analysis (RCA) teams. Tanya wears various hats as a patient safety expert. As the mother of Noah—a 4-year-old whose death was caused by botched communications and poor treatment following tonsillectomy (Lord, 2012)—she knows the grief and anger of patients and families harmed by medical care. Holding a PhD in clinical and population health research from the University of Massachusetts Medical School, which she pursued after Noah’s death, she knows how to design and evaluate healthcare studies and is a bona fide professional member of healthcare teams. As director of patient and family engagement for the Foundation for Healthy Communities in New Hampshire and a consultant on patient engagement for the AHA’s Health Research & Educational Trust, she helps consumers and hospitals work together to improve care.

Tanya advocates training laypeople to represent the voice of patients and families during hospital RCA investigations. Representatives can play a valuable neutral role, working directly with patients and family members “off stage” as well as with clinicians and administrators on the team. While they may be familiar with the emotional experience of harm, they are not personally involved in the immediate event. Neither are they decision-makers for the organization.

Human error and quality improvement are not commonly understood outside the patient safety community. Tanya describes her own journey, beginning as a teacher and mother, passing through the crucible of Noah’s death into “medical error girl”—who couldn’t learn enough about the systems and dynamics that caused her son’s death—and, eventually, becoming a doctor of health research. She recommends that training for patient and family representatives include concepts of medical error, system thinking, human factors engineering, and improvement methods, as well as confidentiality and the financial impacts of adverse events on patients, families, and healthcare organizations. To participate in RCA, representatives should understand as much about the complex context of harm events as possible.

Patient and family advisors serving on hospital committees typically fill gaps where the patient and consumer perspective is missing. Tanya’s approach recognizes the value of broad understanding and the limitations of narrow interests. If we can apply that vision to clinicians and provider organizations, and supply training to help them understand not just principles of safety and quality, but also the patient’s perspective, we’ll all be better served.

SUSAN CARR

Editor, scarr@blr.com