ArticleResearch involvement and engagement2026
What added value does Patient and Public Involvement (PPI) in oncology research bring to cancer patients and what are the challenges in realizing it? A mixed-methods cross-sectional study in four PPI groups in Flanders (Belgium).
Article in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundDespite group-based patient and public involvement (PPI) initiatives in oncology research being a growing trend, little research has been conducted on the added value of PPI according to the personal experiences of its contributors. This study aims to describe the personal experiences of PPI group members and coordinators in Flanders (Belgium) to investigate the dimensions of individual and collective added value of group-based PPI initiatives as well as the challenges in realizing this added value.
methodsAll four PPI groups in Flanders relevant to oncology research were purposefully selected. The study used a mixed-method convergent parallel design. Quantitative and qualitative data were simultaneously collected using survey questionnaires and individual interviews - targeted at PPI group members, and one focus group - targeted at PPI group coordinators. Quantitative data were descriptively analyzed using univariate and bivariate analysis. Qualitative data were analyzed according to the Framework Method applying both deductive and inductive coding. Quantitative and qualitative data were integrated during interpretation of results using a side-by-side comparison.
resultsA total of N = 52 PPI group members (RR: 46%) filled out the survey, out of which the responses of 43 members (38%) were retained for data analysis. N = 7 members who filled out the survey were subsequently individually interviewed, while N = 6 PPI coordinators participated in the focus group. PPI groups create individual added value for their group members as participation provides them with a sense of usefulness and belonging, while learning more about (oncology) research. Furthermore, PPI groups currently create collective added value by improving research feasibility. Potential collective added value creation lies in future roles of PPI groups such as guiding early design to enhance acceptability of evidence-based practices and supporting research dissemination to stimulate a democratization of knowledge.
conclusionsThis study expands the value-based argument for PPI and connects it to the consequentialist argument. The study calls for future impact research to develop impact criteria that consider all relevant dimensions of collective added value creation as well as tackling persistent challenges that prevent added value creation.
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