Research in hemato-oncology: what do patients consider important?

A.F.M. Schölvinck, M.B. de Graaff, Mechteld van den Beld, J.E.W. Broerse

    Research output: Contribution to ConferenceAbstractOther research output

    Abstract

    Background: Setting the research agenda by patients can provide a research community with complementary perspectives on optimal research strategies, as patients possess unique experiential knowledge about their disease.
    Aim: In this case study, commissioned by the Dutch patient-organization Hematon, we articulate the research needs of people with a hemato-oncological disease in the Netherlands in order to formulate a research agenda that can provide directions for future hemato-oncological research.
    Methods: We adopted a four-phase participatory research approach called the Dialogue Model. Mixed methods were used to facilitate the articulation of patients’ needs. Focus group discussions and additional interviews were organized in which 38 patients were consulted. To contextualize patients’ research needs, a root-cause analysis was performed in which patients’ problems and worries in everyday life were mapped. Next, a survey was developed to prioritize the research needs. Results were discussed at a dialogue meeting at which over 30 relevant stakeholders were present (patients, funding agencies, researchers and health care professionals).
    Results: Research aimed at curing the hemato-oncological disease is prioritized by respondents, as well as research aimed at improving patient’s quality of life. Except for research needs addressing the side-effects of stem cell transplantation and in particular Graft versus Host Disease, most of the prioritized research topics can be generalized to oncological research themes that are not specific to hemato-oncology.
    Conclusions: Our findings coalesce into a research agenda from the patient perspective that includes themes which can be adopted by traditional hemato-oncological research and broadly defined healthcare related research, and that can influence policy. Also, the research agenda promotes equal collaboration between doctors and patients. The broad perspective offered by the results enables the applicability of this study to other oncology research fields, providing opportunities for joint action.
    Original languageEnglish
    Publication statusPublished - 2016
    EventUICC World Cancer Congress: Mobilising Action, Inspiring Change - Paris, France
    Duration: 31 Oct 20163 Nov 2016

    Conference

    ConferenceUICC World Cancer Congress
    CountryFrance
    CityParis
    Period31/10/163/11/16

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