Current challenges in PRP–researcher collaboration
| Challenges | Research questions | How to address |
| Education | Can experienced PRPs become too professional? To what extent are trained PRPs still able to provide an authentic view on their illness? Is it necessary for PRPs to acquire some basic knowledge of research and medicine to provide meaningful input in research from the patient perspective? | Over the years, several research communities have recognised the need to establish support and training programmes for PRPs. EULAR is developing online courses and OMERACT provides regularly educational webinars and runs workshops and daily update and feedback sessions during the biennial meetings. A systematic evaluation of objectives, content and impact is desirable. |
| Acknowledgement | Should PRPs be compensated for their time and commitment? | The rheumatology community could learn from exploring recommendations and current practices of important research institutes and organisations such as EMA, NIHR/INVOLVE, PCORI and the Canadian Arthritis Patient Alliance (CAPA). |
| Representativeness | Like many other disciplines, rheumatology faces difficulties in ensuring a wide representation of the patient population in terms of ethnicity, health education and regional diversity. In addition, patient involvement in research is still mainly taking place in the Western world. How can power dynamics and unequal relationships between patients and healthcare practitioners be changed? | Collecting evidence from case studies that applied different forms of patient engagement could help us to learn more about the conditions for enhancing the representativeness of the patient perspective and the complementary input that patients provide through different strategies for generating patient evidence. |
| Inclusiveness | How can we ensure that the perspective of people with limited health literacy is not ignored? | New strategies for recruitment and engagement need to be developed to ensure that people who are usually refusing participation or who are excluded can become part of research. This requires additional efforts in terms of motivation, time and resources. |
| Sustainability | How can we ensure that the perspective of patients is preserved throughout the research process? | The prolonged involvement of PRPs is a critical feature of the OMERACT process and to emphasise the value of engaging patients in all research phases, working groups are required to nominate their PRPs before they can be registered with OMERACT and begin their work. |
| Demonstrating impact | What are relevant indicators for measuring the impact of patient involvement in research? Which methods should be explored further to demonstrate impact of participatory research? | More published case studies, following the GRIPP2 reporting checklists for patient and public involvement, would facilitate mutual learning and increase the body of knowledge on the added value of engaging PRPs. |
| Relational empowerment | Does the ultimate alignment of perspectives in PRP–researcher partnerships reflect successful collaboration or consensus, or the loss of the authentic patient perspective? | Qualitative research of patients, PRPs and researchers’ experiences of long-term collaboration is needed to better understand the process of consensus, harmonisation of perspectives and shared decision-making. |
EMA, European Medicines Agency; EULAR, European League Against Rheumatism; GRIPP2, Guidance for Reporting Involvement of Patients and Public 2; NIHR, National Institute of Health Research; OMERACT, Outcome Measures in Rheumatology; PCORI, Patient-Centred Outcome Research Institute; PRP, Patient Research Partners.