Department of Health Policy and Management, Center for Health Services & Outcomes Research, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
Johns Hopkins Medicine Alliance for Patients, LLC (JMAP), Baltimore, MD, USA.
Health Expect. 2020 Feb;23(1):148-158. doi: 10.1111/hex.12983. Epub 2019 Oct 23.
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 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.
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.
尽管越来越关注患者和家庭咨询委员会（PFAC），但尚未充分研究非 PFAC 成员的患者对 PFAC 的期望。如果 PFAC 要帮助医疗系统实现某些目标（例如增加患者对医疗系统的满意度），了解他们的期望至关重要。
深入了解非 PFAC 成员的患者对 PFAC 的期望。
2018 年 7 月至 9 月，我们使用焦点小组进行了一项定性研究。
我们招募了从约翰霍普金斯医学联盟为患者（JMAP），LLC 接受护理的患者和护理人员，这是一家医疗保险责任制医疗组织，该组织于 2014 年成立了 PFAC，即受益人咨询委员会。
使用扎根理论，我们分析了实地笔记，分析性备忘录和转录本，以开发通过 PFAC 进行患者参与的理论模型。
42 名患者和护理人员参加了五个焦点小组，其中包括不同年龄，种族，健康状况和社会经济地位的个体。参与者对 PFAC 知之甚少。参与者想知道谁代表他们（被解释为一种政治代表形式），并强调代表多样性的必要性。谁重要是因为谁可以影响 PFAC 的所作所为。参与者期望所有患者都能够与 PFAC 进行沟通，并且有意义的参与可以增强对医疗系统的看法。
从尚未担任顾问或代表的患者那里征求有关患者代表的意见，有可能为 PFAC 的活动提供信息。应注意改善和衡量患者对其患者代表的认识和互动。
