Putting Patients at the Center of Patient-Centered Research
Ensuring that patients’ priorities are at the heart of outcomes research is critical to maximizing its value. This requires the involvement of patients in all aspects of research from study design to dissemination. But bringing in patients as advisers, study personnel, and co-investigators gives rise to new challenges. At the CSPH, we are thinking about the ethics of patient-centered research and how to best integrate patients and caregivers as research partners and advocates.
Working with PCORI and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, the CSPH has developed recommendations on the oversight of patient-centered research:
Working with a Patient and Family Advisory Council (PFAC)
In 2015, the SHARPP team began their study “Navigating High Risk Surgery: Empowering Older Patients to Ask Questions that Inform Decisions about Surgical Treatment” to help us understand communication between patients and surgeons. The Patient and Family Advisory Council (PFAC) played a critical role in addressing some of the barriers they faced while recruiting patients and disseminating results. A Patient and Family Advisory Council (PFAC) is a group of patients, family members, and staff at an institution that provides patient support services, health system feedback, and act as advocates to improve the patient experience and ensure patient and family-centered care.
PFACs help to inform institutions on what matters to patients, encourage the alignment of research and patients’ goals, and facilitate the distribution and dissemination of research findings in a way that is accessible and understandable to patients and family members. In recent years, researchers and funders have recognized the value and importance of integrating the patient and family perspective into the design, conduct, and dissemination of research studies. Its success has led to a growing national interest in ethically and effectively integrating patients into patient-centered research.