Developing a patient and family research advisory panel to include people with significant disease, multimorbidity and advanced age.

Abstract

BACKGROUND: People who have experienced illness due to significant disease, multimorbidity and/or advanced age are high utilizers of the health care system. Yet this population has had little formal opportunity to participate in guiding the health care research agenda, and few mechanisms exist for researchers to engage this population in an efficient way. OBJECTIVE: We describe the process of developing a standing patient and family advisory panel to incorporate this population's voice into research in the USA. METHODS: The panel was created at the University of Colorado. Preliminary panel development consisted of a needs assessment, information gathering and participant recruitment. We collected feedback from researchers who consulted with the panel and from panel members in order to better understand the experience from the patient and family member perspective. RESULTS: The patient and family research advisory panel consists of eight advisors who have experience with significant disease, multimorbidity and/or advanced age, two physicians and a program manager. The panel meets every other month for 2 hours with the main purpose of advising diverse researchers on health care studies. CONCLUSION: People with significant disease, multimorbidity and/or advanced age represent a growing demographic in the USA, and their engagement in research is essential as the model of health care delivery moves from volume to value.