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- Title
The value of partnership in patient-driven as well as in researcher-driven projects.
- Authors
Søndergaard, Henning; Deele, Malene; Agerskov, Hanne; Lomborg, Kirsten; Finderup, Jeanette
- Abstract
Patient involvement in health research is rarely driven solely by patients, who could be considered to have the highest degree of investment in such research. In the Kidney Connect project, the patients have been the driving force. This commentary considers the following questions: How did we, as patients, lead the work as the driving force in the project? What went well and what did not go so well from our perspective? How did the project compare with work driven by researchers? We argue that projects driven solely by either patients or researchers each have their own limitations. Projects driven solely by patients have some limitations in their robustness, rigour, and likelihood of publication. Nevertheless, a project driven solely by patients has been able to produce findings that are broadly comparable to a project driven solely by researchers that employed methods ensuring robustness and rigour. We suggest collaboration between patients and researchers also for projects driven by patients. Plain English summary: Health research often uses patients as either participants or partners. Patients running the research is less common, even though the outcomes might be more important to patients than to anyone else. A medical company started the Kidney Connect project, but invited patients to drive it. The main driving role was planning and conducting data collection and analysis of data for the project. In this commentary, patient representatives describe how they led the project's work, what went well and what did not go so well for patients. It then compares the project's results with those from similar work that involved patients as partners but had only researchers in charge. We found that certain things can limit research that is run only by patients, but it has similar results to a project with only researchers in charge.
- Subjects
PATIENT participation
- Publication
Research Involvement & Engagement, 2023, Vol 9, Issue 1, p1
- ISSN
2056-7529
- Publication type
Article
- DOI
10.1186/s40900-023-00432-7