Abstract: Although patient involvement in health research decision-making is growing, in practice it proves challenging to involve patients meaningfully and sustainably. This article looks at the factors in the system which influence whether patient involvement in reviewing funding applications is meaningful. It is based on a case study of involvement in the Dutch Cancer Society. Although at first all the stakeholders were positive about the involvement, they hadn’t developed tools or structures to support it. Once these were in place, it became apparent there were cultural barriers to its having an effect. The cultural shift took longer to come about and may have reduced the impacts of the involvement of patients initially. The authors conclude that overcoming such barriers requires an approach that considers the practical issues, the organisational structures for making decisions and the overall organisational culture.
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Categories: journal article service users and carers researchers research commissioners relevant to all service users lessons from direct experience of involvement commissioning research review of research proposals strategic level decision making staff in research organisations
Date Entered: 2019/07/30
Date Edited: 2019/07/30