AI Article Synopsis
- Patients are very involved in health research, but usually researchers decide what happens. In the Kidney Connect project, patients took charge and led the work!
- The article talks about how patients led the project, what worked well, and what didn’t go as planned compared to research led by scientists!
- It shows that while patient-led projects might have some issues, they can still get good results, and it’s better when both patients and researchers work together!
Article 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.
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|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10074882 | PMC |
| http://dx.doi.org/10.1186/s40900-023-00432-7 | DOI Listing |
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