Who represents me? A patient‐derived model of patient engagement via patient and family advisory councils (PFACs)

Abstract

Background: Despite increasing attention to patient and family advisory councils (PFACs), what patients who are not PFAC members expect of PFACs remains understudied. Understanding their expectations is critical if PFACs are to help health systems achieve certain outcomes (eg increased patient satisfaction with health systems). Objective: To obtain rich insights about what patients who are not PFAC members expect of PFACs. Design: From July to September 2018, we conducted a qualitative study using focus groups. Setting and participants: We recruited patients and caregivers who receive their care from the Johns Hopkins Medicine Alliance for Patients (JMAP), LLC, a Medicare accountable care organization that in 2014 established a PFAC, the Beneficiary Advisory Council. Approach: Using grounded theory, we analysed field notes, analytic memos and transcripts to develop a theoretical model of patient engagement via PFACs. Results: Forty-two patients and caregivers participated in five focus groups that included individuals of different ages, races, health statuses and socio-economic statuses. Participants were largely unaware of PFACs. Participants wanted to know who represented them (interpreted as a form of political representation) and emphasized the need for representatives' diversity. Who mattered because who could affect what PFACs do. Participants expected that all patients should be able to communicate with PFACs and that meaningful engagement could enhance perceptions of health systems.Conclusions: Eliciting views about patient representation from patients who have not been engaged as advisors or representatives has the potential to inform PFACs' activities. Attention should be given to improving and measuring patients' awareness of, and interactions with, their patient representatives. | 149DUKHANIN et Al.

“They heard our voice!” patient engagement councils in community-based primary care practices: a participatory action research pilot study

“…One council proposed that councils themselves become responsible for the patient partnership strategy/policy in the clinic. Among other activities, they could make connections with patients who enquire about patient representatives and their projects, giving councils access to a broader range of patient perspectives [ 50 , 51 ].…”

Patient, Public, Consumer, and Community Engagement: From Consucrat to Representative Comment on "The Rise of the Consucrat"

“…Our research examining what a general patient population expects of those who serve as members of patient and family advisory councils in the United States found representation to be of primary concern, but it also found no singular answer to what representation means. 19 Some participants endorsed formal representation (where an individual is authorized to be a representative, eg, via election), others endorsed descriptive representation (where the representative is supposed to have characteristics in common with those represented), and still others were most concerned about substantive representation (where the representative is assessed by whether the interests of those represented are actually advanced). 20 Both the participants and the literature stress the importance, as an extension of descriptive representation, of the lived-experience expertise of representatives.…”

“…This solution is grounded in the voice of P2C2 participants and is based on a patient-derived model of P2C2 engagement. 19 When representatives are connected with those whom they represent, they can more easily convey more than their own individual views. Being connected to others can mitigate the adverse aspects of professionalization, such as cooptation, by ensuring representatives remain grounded in the realworld concerns of their constituency.…”

Sustainable generation of patient‐led resources in a learning health system

“… 5 While PFACs help provide much‐needed patient/family representation, physicians and researchers may struggle to integrate these perspectives in practice. 5 , 6 , 7 To patients/families—and likely the entire healthcare community—PFACs acknowledge that patient/family voices are essential. To the patient co‐authors of this paper, this acknowledgement provides hope about the future of our healthcare.…”