Abstract

BackgroundPatient participation (PP) organised as patient advisory boards (PABs) is a statutory part of health care institutions in Norway (1). There is limited agreement on how to engage PABs in a meaningful manner (2). More knowledge on how PAB representatives experience patient engagement (PE) is needed.ObjectivesTo explore how PAB representatives engage in PABs with regard to organisation, influence, and impact on decision-making processes and service delivery.MethodsPAB representatives recruited from rehabilitation institutions, representing all four health regions in Norway completed a PE evaluation tool. The tool is tested for reliability and content validity with good results and comprises 35 items including four main domains policies and practices, participatory culture, collaboration, and influence and impact that provided responses about PE-levels (3). Categorical data were summarized to modal scores using frequencies and percentages, and response categories were collapsed from five to three. The collapsed categories were divided into PE-levels; barrier, intermediate, and facilitator (Table 1). Free-text responses were analysed according to principles of manifest content analysis, summed up, and used to complete the results of the scores. Free text responses were analysed using Quirkos version 2.4.1.ResultsOf the 150 contacted PAB representatives, 47 (32%) responded. PAB representatives’ mean age was 60.5 (min-max 30 - 80), 62% were female and a majority (81%) had prior experience with PP. The results showed that 75% of the participants agreed that patient-centered care was strengthened as a result of PE. Three out of four main domains scored indicating a facilitating PE-level (Table 1). The domain, influence and impact scored with an intermediate PE-level. Regarding influence and impact, half of the participants did not know if PE input had influenced management decisions, and 60% had rarely identified any PE contributions. The results from free text analyses showed that PE was coded as a facilitator seven times, and as a barrier to PE 26 times. The most frequent barrier was exclusion of PAB (13 codes), and the most coded facilitator was inclusion of PAB (3 codes).ConclusionFindings indicate that PAB representatives are satisfied with how rehabilitation institutions organise PABs. Unclear adherence to the values and principles of PP may hinder influence and visibility from PE contributions.

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