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

Health Expectations : an International Journal of Public Participation in Health Care and Health Policy
Vadim DukhaninMatthew DeCamp


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). To obtain rich insights about what patients who are not PFAC members expect of PFACs. From July to September 2018, we conducted a qualitative study using focus groups. 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. Using grounded theory, we analysed field notes, analytic memos and transcripts to develop a theoretical model of patient engagement via PFACs. 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 beca...Continue Reading


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