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Abstract
Background HIPPOCRATES is a large, international research project addressing the unmet needs of people with psoriatic arthritis (PsA). It aims to improve early identification of PsA in people with psoriasis, as well as therapeutic options and outcomes for people living with PsA. The project will run for five years with a budget of € 21 million provided by the Innovative Medicines Initiative (IMI) – a joint undertaking of the European Union and the European Federation of Pharmaceutical Industries and Associations (EFPIA). During the evaluation of the HIPPOCRATES grant application, the patient involvement was highly praised: “A strength of this proposal is that patient representative organisations seem highly integrated in the proposal and will be important avenues for dissemination.”
Objectives To explore the components of an effective strategy for incorporating the patient perspective in an international research consortium.
Methods The experiences of the first six months of patient involvement in HIPPOCRATES were examined. We organized a survey and an online workshop with all participating patient research partners (PRPs) to gather data on the experiences of participation in the different working groups of the project, as well as to discuss common challenges and solutions.
Results Patient involvement was visible and reported from the very beginning of the project, including participation of PRPs in the first consortium meeting for study design. The chosen strategy is characterized by an integrated approach containing multiple layers of patient involvement [Figure 1], with the consortium following the EULAR recommendations for the inclusion of patient representatives in scientific projects.
The active participation of 13 PRPs with well-defined roles and responsibilities ensures the preservation of the patient perspective during the entire duration of the project. Together they form the HIPPOCRATES Patient Advisory Council (PAC). PRPs are represented in the project’s management team, in all work packages and in the External Advisory Board. Three patient organisations support the project: GRAPPA-EU (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) and EULAR PARE (People with Arthritis/Rheumatism in Europe) as consortium partners, and EUROPSO (European Federation of Psoriasis Patients’ Associations). EULAR is co-leading the work package focusing on Communication, Dissemination, Exploitation and Sustainability, and especially those activities targeting patients, PRPs (regular educational sessions), patient organisations and the general public. Finally, people with PsO will be recruited for a large European cohort study (HIPPOCRATES Prospective Observational Study, HPOS) which aims to identify clinical and molecular risk factors for developing PsA.
Results from the PRP survey were positive. Almost all PRPs have been invited to their work package meetings and included in email exchanges, and all feel well-included in their assigned groups and roles. Nevertheless, it was reported that some PRPs may be reluctant to raise their voice or to be involved in discussions at virtual meetings. This was one of the topics addressed during the online workshop, together with discussions on ethics and recruitment strategies for HPOS.
Conclusion It has been central to the HIPPOCRATES ethos that highly experienced PRPs were involved from its initial conception. PRPs with leading responsibilities in patient organisations or representing relevant academic backgrounds have contributed substantially to the definition of research priorities and will have active on-going engagement in the interpretation and implementation of future results. By demonstrating the pervasive benefit of the patient voice throughout the project, HIPPOCRATES will be an example for future projects in RMD and health research.
Acknowledgements Meaningful patient involvement is critical to successful international grant applications: the case of the HIPPOCRATES consortium [“Health initiatives in Psoriasis and PsOriatic arthritis ConsorRTium European States”]
Lars Werner on behalf of the HIPPOCRATES Patient Advisory Council (PAC)
Disclosure of Interests Lars Werner Speakers bureau: Novartis, Janssen, LEO Pharma, Consultant of: Novartis, Janssen, LEO Pharma, B-I, UCB, Grant/research support from: Novartis, Janssen, LEO Pharma, UCB, AbbVie, Sanofi, B-I, BMS, Pfizer, Employee of: LEO Pharma, AbbVie