Patient involvement at the managerial level: the effectiveness of a patient and family advisory council at a regional cancer centre in Sweden

Abstract

Background 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. Methods 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. Results 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. Conclusions 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.

Good to know – This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research

“…A 3-stage project plan, implementing all aspects of PPIE (participation, engagement, and involvement) was used to first generate knowledge about the current establishment of PPIE before using involvement of patients and the public to integrate the results practiced. 21,30,51,52 Finally, it is hence essential to increase the transparency of and education on current research for the public, as well as to set compulsory standards for research to involve patients into the entire process. Thereby a familiarization of all stakeholders with the manifold options of involvement could be achieved and the quality of PPIE could be warranted by making sure it is not only practiced where it can be implemented easily, but instead where it is most relevant for the emancipation of the patients´interests and needs.…”

“…Thereby new strategies should especially focus on the involvement in early phases of research to elevate the now predominantly passive participation to the level of actively shaping research questions to genuinely emancipate the opinion of the patient group and to avoid tokenism. Furthermore, authors should clearly indicate PPIE as an integral part of research to ensure a common understanding and clear communication of where and when PPIE is practiced 21,30,51,52 . Finally, it is hence essential to increase the transparency of and education on current research for the public, as well as to set compulsory standards for research to involve patients into the entire process.…”