Background: Engaging patients as research advisors and collaborators is an essential component of patient-centered research. Accessing Patient and Family Advisory Councils (PFACs) is one established model for engaging patients in research. However, PFACs that operate exclusively for the purpose of advising and supporting researchers in Hospital Medicine are uncommon.
Purpose: To create, operationalize, and sustain a research-focused PFAC for a national multi-center Hospital Medicine research network based on evidence-based best practices.
Description: Following seed funding from the Patient Centered Outcomes Research Institute, we completed a series of studies describing opportunities and barriers to patient engagement in Hospital Medicine research which has been presented previously at SHM Converge. This work has subsequently informed an iterative six-stage process that has resulted in the creation of a new research-focused PFAC (Figure 1). The PFAC comprises of 12 patient and caregiver members from 10 distinct geographical area and hospital systems in the United States. The PFAC has met monthly since August 2018. Typically, at each meeting up to two studies are presented by researchers for PFAC member feedback. Study topics are varied, relating to hospital care transitions, health equity, and diagnostic reasoning (see Table 1) and involve obtaining PFAC input on the study topic, design, data collection approaches, recruitment and retention strategies, patient facing materials and dissemination approaches. To date, the PFAC has provided input on 7 grant submissions, of which four have been successfully funded, allowing the PFAC to partner with investigators throughout the entire trajectory of these studies. PFAC members have also advocated to investigators within the research network to conduct studies that are important to them (e.g., related to inpatient COVID-19 visitor restrictions). Our PFAC primarily relies on time volunteered by our patients, although stipends are provided to members when studies are externally funded, and its day-to-day activities are managed by a researcher who receives administrative support from the research network.
Conclusions: Creation of a PFAC for a multi-center Hospital Medicine research network, using evidence-based practices for member engagement, creates opportunities for researchers to engage and partner with patients and caregivers, thereby ensuring the patient perspective remains central to the research process.