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

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.

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“…In this case, the issue of freedom of choice regarding bedtimes is a typical example, which older adults worldwide, such as the participants in our study, are asking for [ 26 ]. When the process engagement is integrated in a proper way, a better understanding between caregivers and older adults will be reached and the right themes will be worked on [ 27 ].…”

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“…Tenant à une double acception du concept − l'expérience patient pouvant être entendue comme synonyme de savoirs expérientiels d'une part, ou comme vécu plus ou moins positif de la maladie, du système de santé et du parcours de soin d'autre part − cette incompréhension a finalement permis d'aboutir à ce qui constitue le coeur du cahier des charges de l'AÀP. En effet, ce dernier a invité les candidats à déposer des projets se saisissant de l'une ou l'autre de ces acceptions 5 .…”

“…S'il n'est pas possible d'analyser ceux-ci de manière exhaustive dans le cadre de cet article, il convient de noter que les patients ont été très peu invités à intégrer les dispositifs de soutien et de financement de la recherche. En conséquence, leurs besoins n'orientent au mieux que partiellement les projets de recherche académique [5].…”

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“…“When patients are involved in research, this will enhance the societal impact and relevance” (Groot et al, 2022 , p. 1).…”