Patient and family advisory councils (PFAC) feedback as the voice of health care consumers

Abstract

Background: Throughout the U.S., healthcare organizations continuously find ways to incorporate patient feedback with efforts to advance the delivery of patient-centered care. Patient and family advisory councils (PFACs) can be used as a strategy to better understand and honor the patient experience and improve care delivery thanks to patient input to obtain patient perspectives. The importance of formal efforts to incorporate the patient perspective is highlighted by the Comprehensive Primary Care Plus (CPC+) program implemented by the Centers for Medicare and Medicaid Services which requires organizations to establish PFACs to receive funding. Site support for PFACs included a patient experience manager who oversaw recruitment and facilitated each clinic’s council meetings. Other support personnel consisted of the practice manager, physicians, care coordinators, and advanced practice providers. This study employed a leadership framework to better understand how health care organizations use PFACs to discover and define patient/family advisors perspectives and how they can be related to different styles of leadership used within healthcare settings. Using contemporary leadership styles such as servant leadership, transactional leadership, transformational leadership, and leader-member exchange (LMX) theory, we examined perspectives of PFAC member’s associated with leadership and its effect on their experience as a patient/family advisor. This study aimed to understand the patient/family advisor perceptions associated with the impact of PFACs and the decisions surrounding the academic medical center and how health care leaders can support these perceptions with the leadership styles outlined above. Methods: We conducted a qualitative study of patient/family advisors serving on a PFAC within a Midwestern Academic Medical Center during the time of this study. Using a semi-structured interview guide, we conducted primarily individual in-person interviews. The interview guide addressed issues include the participant’s understanding of patient engagement, experiences on the PFAC, what they valued from participation on a PFAC, perceptions of healthcare and impact on health outcomes. This manuscript examines an emergent finding related to the impact of leadership on PFACs and patient/family advisors. Results: Nineteen participants were interviewed across five PFACs and four main themes were identified and linked to the leadership styles and PFAC involvement: qualities of leaders; seeking a 360 degree view of the patient experience; seeking focused feedback on specific AMC initiatives; and the importance of trust. Advisors appreciated leaders who were open-minded and focused on improving the patient experience. They also discussed ways in which their input reflected a comprehensive view of what patients experience that may not be easily observed by healthcare team members and leaders. In addition, they described how they provided feedback on specific initiatives within the healthcare system. Finally, they valued an environment within the PFAC that felt trusting and comfortable. Conclusions: As health care continues to grow and improve, patient and family engagement techniques are continually evolving. This study surrounding the experiences of patient/family advisors and PFACs can be used for further research and to gain a better understanding of this topic. This research presented patient/family advisors experiences, working together on patient family advisory councils with health care leaders, staff, providers, and managers, signaling the distinctive experiences of these participants which merits additional examination. There is further need for a meaningful discussion concerning the distinctive way doctors, providers and patients perceive the importance and meaning of medical encounters and patient and family engagement strategies.