“I am struggling to find an explicit task”: a midterm evaluation of patient research partner involvement in HIPPOCRATES translational research

Objectives
The HIPPOCRATES project is a 5-year, international research partnership dedicated to studying and treating psoriatic disease. Integrating Patient Research Partners (PRPs) into large scientific groups, particularly those heavily focused on preclinical or laboratory-based science, is challenging. This paper details a midterm evaluation of how effectively PRPs have been engaged in the HIPPOCRATES project.

Methods
Our evaluation used a mixed-method approach comprising 7 dedicated reflective PRP meetings, 2 midterm surveys among PRPs and researchers, a modified World Café discussion, and 5 structured dialogue meetings. We used descriptive statistics and pragmatic constant comparative analysis.

Results
Substantial PRP input occurred early during the project’s presubmission phase, which resulted in a formal strategy for patient involvement. However, 3 years after approval, significant differences emerged between researcher and PRP perspectives. Compared with researchers, PRPs reported more challenges, had differing expectations, and perceived a lower overall impact. Although PRPs were highly motivated at the start and contributed significantly to clinical components, motivation decreased for some regarding the laboratory components. This was attributed to highly technical language, long contract negotiations, and a lack of clear opportunities for input or tangible results. Consortium members collaboratively agreed upon a set of specific changes during the 5 dialogue sessions.

Conclusions
Despite the early and substantial involvement of PRPs in the initial study design, the PRPs themselves rated their influence on HIPPOCRATES lower than the researchers did. Further evaluation over the next 2 years will show whether the jointly developed solutions successfully enhance their impact on future research outcomes.