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What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again

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  • Barbara Groot

    (Department Public Health and Primary Care, Leiden University Medical Centre, Leiden University, Albinusdreef 2, 2333 ZA Leiden, The Netherlands
    Leyden Academy on Vitality and Ageing, Rijnsburgerweg 10, 2333 AA Leiden, The Netherlands)

  • Annyk Haveman

    (Centrum voor Cliëntervaringen, Jacob Bontiusplaats 9 (INIT-gebouw), 1018 LL Amsterdam, The Netherlands)

  • Mireille Buree

    (Centrum voor Cliëntervaringen, Jacob Bontiusplaats 9 (INIT-gebouw), 1018 LL Amsterdam, The Netherlands)

  • Ruud van Zuijlen

    (Centrum voor Cliëntervaringen, Jacob Bontiusplaats 9 (INIT-gebouw), 1018 LL Amsterdam, The Netherlands)

  • Juliette van Zuijlen

    (Centrum voor Cliëntervaringen, Jacob Bontiusplaats 9 (INIT-gebouw), 1018 LL Amsterdam, The Netherlands)

  • Tineke Abma

    (Department Public Health and Primary Care, Leiden University Medical Centre, Leiden University, Albinusdreef 2, 2333 ZA Leiden, The Netherlands
    Leyden Academy on Vitality and Ageing, Rijnsburgerweg 10, 2333 AA Leiden, The Netherlands)

Abstract

Health researchers increasingly work with patients in a participatory fashion. Active patient involvement throughout the research process can provide epistemic justice to patients who have often only had an informant role in traditional health research. This study aims to conduct participatory research on patient experiences to create a solid research agenda with patients and discuss it with relevant stakeholders. We followed a participatory research design in 18 sub-studies, including interviews and group sessions ( n = 404 patients), and dialogue sessions ( n = 367 professionals and directors in healthcare and social work, municipality civil servants, and funding agencies) on patient experiences with psychiatric care, community care, daycare, public health, and social work. Findings from the eight-year study show that four priorities stood out: attention for misuse of power and abuse; meaningful participation; non-human assistance, and peer support. Moreover, that: (1) patients, based on their experiences, prioritize different topics than experts; (2) most topics are trans-diagnostic and point to the value of a cross-disability approach; and (3) the priorities of patients are all too easily dismissed and require ethics work to prevent epistemic injustice. Long-term investment in a transdisciplinary community of practice offers a solid basis for addressing patient-centered topics and may impact the quality of life of people living with chronic illness, disability, or vulnerability.

Suggested Citation

  • Barbara Groot & Annyk Haveman & Mireille Buree & Ruud van Zuijlen & Juliette van Zuijlen & Tineke Abma, 2022. "What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again," IJERPH, MDPI, vol. 19(4), pages 1-15, February.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:4:p:1927-:d:745164
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    References listed on IDEAS

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    1. Barbara Groot & Tineke Abma, 2021. "Boundary Objects: Engaging and Bridging Needs of People in Participatory Research by Arts-Based Methods," IJERPH, MDPI, vol. 18(15), pages 1-11, July.
    2. Kristin Margrethe Heggen & Henrik Berg, 2021. "Epistemic injustice in the age of evidence-based practice: The case of fibromyalgia," Palgrave Communications, Palgrave Macmillan, vol. 8(1), pages 1-6, December.
    3. 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.
    4. Rosana E Norman & Munkhtsetseg Byambaa & Rumna De & Alexander Butchart & James Scott & Theo Vos, 2012. "The Long-Term Health Consequences of Child Physical Abuse, Emotional Abuse, and Neglect: A Systematic Review and Meta-Analysis," PLOS Medicine, Public Library of Science, vol. 9(11), pages 1-31, November.
    5. Caron-Flinterman, J. Francisca & Broerse, Jacqueline E.W. & Bunders, Joske F.G., 2005. "The experiential knowledge of patients: a new resource for biomedical research?," Social Science & Medicine, Elsevier, vol. 60(11), pages 2575-2584, June.
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    1. Marije Blok & Barbara Groot & Johanna M. Huijg & Alice H. de Boer, 2022. "Older Adults’ Engagement in Residential Care: Pitfalls, Potentials, and the Role of ICTs," IJERPH, MDPI, vol. 19(5), pages 1-14, March.

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