Department of Public Health and Caring Sciences, Uppsala University, Box 564, 751 22, Uppsala, Sweden.
BMC Health Serv Res. 2021 Sep 25;21(1):1011. doi: 10.1186/s12913-021-07026-7.
In cancer care as well as other types of treatment and care, little is known about the contribution of Patient and Family Advisory Councils (PFACs) operating at the managerial level in healthcare organizations. The aim of the study was to investigate the effectiveness of a Swedish PFAC operating at the managerial level at one of Sweden's six regional cancer centres.
This was a qualitative, single-case study based on interviews with PFAC participants and meeting minutes from PFAC meetings. These were analysed using a modified version of a framework developed by Abelson et al. to design and evaluate collective involvement processes in the healthcare sector: (i) representation; (ii) information; (iii) process or procedures and (iv) outcomes and decisions.
The descriptive representation was good regarding geographical location and cancer diagnosis. Information from the regional cancer centre was an important part of the meeting agenda. The procedures encouraged everyone to speak up, and the participants saw the representatives from the regional cancer centre as allies against the hospitals and regions, raising some questions about the PFAC's independence. Regarding outcomes, most participants did not know to what extent their work had led to any improvements in cancer care. However, they still regarded the council as effective, as issues the participants raised were listened to by the representatives from the regional cancer centre and 'taken further' in the healthcare organization.
The participants were satisfied with being listened to, but they found it difficult to know whether their work had led to improvements, in part because they did not know enough about how the healthcare organization worked above the care-provision level. This was a hurdle to achieving change. The study suggests it is more difficult for patients and next of kin to participate at the managerial level, compared to the care-provision level in healthcare systems, where they could potentially influence important aspects of cancer care and policy, since it is at these levels strategic decisions about priorities in cancer care and service configurations are made. This indicates that there is a particular need for guidance and support for patient and public involvement to work successfully at this level, which may include relevant education and training in system knowledge.
在癌症护理以及其他类型的治疗和护理中，人们对在医疗机构中管理层面运作的患者和家庭咨询委员会（PFAC）的贡献知之甚少。本研究的目的是调查在瑞典六家地区癌症中心之一的一家瑞典 PFAC 在管理层面上的有效性。
这是一项基于对 PFAC 参与者的访谈和 PFAC 会议记录的定性、单案例研究。使用 Abelson 等人开发的一种框架的修改版本对这些内容进行了分析，该框架用于设计和评估医疗保健部门的集体参与流程：（i）代表性；（ii）信息；（iii）流程或程序；（iv）结果和决策。
描述性代表性在地理位置和癌症诊断方面很好。来自地区癌症中心的信息是会议议程的重要组成部分。程序鼓励每个人发言，参与者将来自地区癌症中心的代表视为对抗医院和地区的盟友，这引发了一些关于 PFAC 独立性的问题。关于结果，大多数参与者不知道他们的工作在多大程度上导致了癌症护理的改善。然而，他们仍然认为该委员会是有效的，因为参与者提出的问题得到了地区癌症中心代表的倾听，并在医疗保健组织中“进一步推进”。
参与者对被倾听感到满意，但他们发现很难知道他们的工作是否导致了改进，部分原因是他们对医疗保健组织在提供护理水平以上的运作方式了解不足。这是实现变革的一个障碍。该研究表明，与医疗保健系统中的护理提供层面相比，患者和家属在管理层面上参与更加困难，在这些层面上，他们可以对癌症护理和政策的重要方面产生影响，因为正是在这些层面上，对癌症护理的优先事项和服务配置做出了战略决策。这表明，在这一层面成功开展患者和公众参与工作特别需要指导和支持，其中可能包括系统知识方面的相关教育和培训。
