Patient participation in research funding: an overview of when, why and how amongst Dutch health funds
Abstract Background Patient participation in decision-making on health-related research has gained ground. Nineteen Dutch health-related research-funding organisations (HFs) have taken up the challenge to include patients in their funding process. A ‘Patient participation (PP) advisory team’ was set-up, with HF-representatives and patient advocates, who together initiated this study. We provide an overview of when , why , and how PP activities take place in HFs’ funding processes, share main challenges and identify possible solutions. Methods A qualitative research design was used. Data was ga... Mehr ...
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Dokumenttyp: | Artikel |
Erscheinungsdatum: | 2019 |
Reihe/Periodikum: | Research Involvement and Engagement ; volume 5, issue 1 ; ISSN 2056-7529 |
Verlag/Hrsg.: |
Springer Science and Business Media LLC
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Sprache: | Englisch |
Permalink: | https://search.fid-benelux.de/Record/base-29050585 |
Datenquelle: | BASE; Originalkatalog |
Powered By: | BASE |
Link(s) : | http://dx.doi.org/10.1186/s40900-019-0163-1 |
Abstract Background Patient participation in decision-making on health-related research has gained ground. Nineteen Dutch health-related research-funding organisations (HFs) have taken up the challenge to include patients in their funding process. A ‘Patient participation (PP) advisory team’ was set-up, with HF-representatives and patient advocates, who together initiated this study. We provide an overview of when , why , and how PP activities take place in HFs’ funding processes, share main challenges and identify possible solutions. Methods A qualitative research design was used. Data was gathered by questionnaires ( n = 14) and semi-structured interviews ( n = 18) with HF employees responsible for patient participation, followed by a workshop ( n = 27) with involved employees of HFs and key players in PP from national patient organisations and research organisations. A descriptive analysis was used for the questionnaire. A semi-directed content analysis was used for the interviews and the workshop. Results Three stages can be identified in the funding process in which HFs carry out PP activities: (1) strategic decision-making about focus of research (e.g. shared research agendas); (2) call for and receipt of research proposals (e.g. mandatory inclusion of letter of recommendation from patient organisation); (3) decision-making about the funding of research proposals (e.g. patients reside in a patient panel to co-review research proposals). Main challenges identified to carry out PP activities include: how to accommodate diversity of the patient body (mainly encountered in stage 1 and 3); to what extent should patients receive training to successfully participate (mainly encountered in stage 1 and 3); and who is responsible for patient-researcher dialogues (mainly encountered in stage 1 and 2). All nineteen HFs agree that patients should be included in at least one stage of the funding process for health-related research. CONCLUSION: Further broadening and optimising patient involvement is still needed. The ...