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Research agendas involving patients: Factors that facilitate or impede translation of patients’ perspectives in programming and implementation

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  • Carina A. C. M. Pittens
  • Janneke E. Elberse
  • Merel Visse
  • Tineke A. Abma
  • Jacqueline E. W. Broerse

Abstract

Patients are increasingly involved in agenda setting in health research policy, but little is known about whether or not patients’ topics are translated into a funding programme and taken up by researchers. A qualitative evaluation of nine multi-stakeholder agenda-setting projects in the Netherlands was conducted. Document study and 54 semi-structured interviews with stakeholders were undertaken. Three strategies for the translation of research agendas into research programmes were identified: first, one-on-one translation; second, agendas were used to adapt general policies; and third, no translation. A number of factors, facilitating or impeding this translation, were identified, relating to the context or the process of programming and implementation. Context appeared to be crucial: positive attitudes towards patient involvement, good relations between stakeholders and supportive characteristics of organizations. Patient involvement was rarely sustained during programming and implementation. These insights contribute to more effective procedures for programming and implementing research agendas.

Suggested Citation

  • Carina A. C. M. Pittens & Janneke E. Elberse & Merel Visse & Tineke A. Abma & Jacqueline E. W. Broerse, 2014. "Research agendas involving patients: Factors that facilitate or impede translation of patients’ perspectives in programming and implementation," Science and Public Policy, Oxford University Press, vol. 41(6), pages 809-820.
    • Handle: RePEc:oup:scippl:v:41:y:2014:i:6:p:809-820.
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    File URL: http://hdl.handle.net/10.1093/scipol/scu010
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    Cited by:

    1. Dumisa Nyarambi & Fenose Osedeme & Hadii M. Mamudu & Mary A. Littleton & Amy M. Poole & Cynthia Blair & Carl Voigt & Rob Gregory & David Drozek & David W. Stewart & Florence M. Weierbach & Timir K. Pa, 2023. "Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda," IJERPH, MDPI, vol. 20(9), pages 1-10, April.
    2. Elizabeth Manafò & Lisa Petermann & Virginia Vandall-Walker & Ping Mason-Lai, 2018. "Patient and public engagement in priority setting: A systematic rapid review of the literature," PLOS ONE, Public Library of Science, vol. 13(3), pages 1-18, March.
    3. Simone Harmsen & Carina A C M Pittens & Eva Vroonland & Annemiek J M L van Rensen & Jacqueline E W Broerse, 2022. "Supporting health researchers to realize meaningful patient involvement in research: Exploring researchers’ experiences and needs [New Requirements for Patient and Public Involvement Statements in ," Science and Public Policy, Oxford University Press, vol. 49(5), pages 751-764.

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