Embedding patient involvement in reviewing grant proposals at the Dutch Cancer Society

A.F.M. Schölvinck, A. Roelofsen, C.A.C.M. Pittens, T.J. Schuitmaker-Warnaar, D. Heijmans, J.E.W. Broerse

    Research output: Contribution to ConferenceAbstractOther research output


    Background: Patient involvement (PI) in decision making for oncology research is gaining ground, i.a. in response to increased demands of legitimacy of grant allocations. Albeit several PI strategies in reviewing grant proposals have been
    identified, embedding the patient perspective remains challenging.
    Aim: The objective of this research was to gain insight in facilitating and impeding factors for embedding PI in reviewing grant proposals at the Dutch Cancer Society (DCS), to formulate recommendations to sustainably voice the patient perspective in this core activity of the organization.
    Methods: The emergent, participatory research approach Reflexive Monitoring in Action was adopted. Using the theoretical framework of Transition Theory, cultural, structural and practical factors facilitating or impeding the transition
    on the regime level were analyzed. Within DCS, eight research funding programs served as pilot experiments in which patients assessed grant proposals on to them relevant criteria. These initiatives were evaluated in 17 formal interviews
    with relevant stakeholders (patients, policy staff and researchers), observations and document analysis. Based on the findings, the process of PI in reviewing grant proposals was standardized by developing a blueprint which was then
    extended to all research funding programs. The role of patients in reviewing grant proposals was anchored by installing patient reviewers as members of the Advisory Board of DCS. This installment was evaluated by five formal interviews.
    Results: PI in reviewing grant proposals at DCS has consolidated. Factors facilitating the embedding are mainly found in the structural domain; procedures have been adapted to suit the patients’ participation. For example, the blueprint to standardize PI in reviewing grant proposals can be identified as an important facilitator. At management level, the organization has fully incorporated PI. Yet, PI requires a cultural transition too, which is currently slightly lagging behind.
    Barriers can be identified in aligning all influential stakeholders to acknowledge the value of PI. The facilitators and barriers at cultural and structural level influence practice: although the contributing patients are well facilitated by the
    organization and the patients’ voice has been recognized formally, its influence remains contested.
    Conclusions: Embedding PI in reviewing grant proposals at DCS is a complex transition. Standardization of PI in the reviewing process can be recommended, as well as paying attention to all three domains (cultural, structural and practical) to promote the sustainability of incorporating the patient perspective in reviewing grant proposals.
    Original languageEnglish
    Publication statusPublished - 2016
    EventUICC World Cancer Congress: Mobilising Action, Inspiring Change - Paris, France
    Duration: 31 Oct 20163 Nov 2016


    ConferenceUICC World Cancer Congress


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