Patient Involvement in HIPPOCRATES
Patient representatives from three organisations have joined the consortium to ensure the patients’ perspective is preserved and prioritised in all research activities to maximise the project’s impact. These organisations are EULAR PARE (European Alliance of Associations for Rheumatology - People with Arthritis/Rheumatism in Europe), EUROPSO (European Federation of Psoriasis Patients’ Associations) and GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis).
HIPPOCRATES follows an integrated approach of strong patient involvement in the overall consortium government as well as in all work packages through four different routes:
- Patient research partners (PRPs) are involved in every Work Package of the project and one PRP is a member of the HIPPOCRATES Executive Team. Depending on the phase of the study, the PRPs will be involved in research design, protocol development, ethical procedures, recruitment strategies, outcome selection, interpretation and dissemination of study findings.
- The 11 participating PRPs form the Patient Advisory Council (PAC) which includes three co-opted members on behalf of EULAR, GRAPPA and EUROPSO. The PAC will meet at least once a year and will monitor the overall research progress and advise the consortium on whether the involvement of patients in the project is adequate and effective.
- EULAR is the co-leader for Work Package 7 focusing on Communication, Dissemination, Exploitation and Sustainability, and especially those communication and dissemination activities targeting patient, patient organisations and the general public. EULAR will also create training opportunities for the participating PRPs.
- Two additional patient representatives are members of the External Advisory Board (EAB). The EAB is an independent body which will keep overview of the project’s progress and provide advice to the consortium when needed.
The consortium follows the EULAR recommendations for the inclusion of patient representatives in scientific projects and combines multiple methods of patient consultation and active involvement of patients as partners. By demonstrating the pervasive benefit of the patient voice throughout the project, HIPPOCRATES will be an example to future projects in RMD and health research.