This three years’ study demonstrates that the perception of the value of patient engagement in laboratory research can change as the result of personal relationships with patients. The original thought of young researchers and other team members “I am doing research because I am interested in molecules” gradually changed into a genuine interest in the life and perspectives of people with the condition under research. Although they initially felt that patients lack knowledge of molecular biology, perceived as necessary to provide a meaningful contribution, they learned, accepted, and appreciated that the added value of PRPs comprised something different. In the end, all participants found the collaboration worthwhile. Impact was reported as a diversity of benefits for patients, researchers, the research process and society, but little added value was seen on the goals and content of basic research, except for the addition of patient relevant topics to the research agenda. These findings are confirmed by publications from the FP7 multi-disciplinary translational research project “EuroTEAM” (Towards Early biomarkers in Arthritis Management). There, many PRPs reported a language gap between patients and researchers, and perceived the opportunities for involvement in preclinical research limited.(5) The authors confirmed that the role and impact of PRPs in their work packages on psychosocial research were more tangible and obvious than in laboratory-based work packages. However, researchers involved in several work packages, learned to recognize and accommodate opportunities for patient involvement in basic research projects.(13)
EuroTEAM participants, both PRPs and researchers, reported many similar benefits of patient involvement as we identified. For instance, PRPs reporting access to the latest research findings and the opportunity to give something back for care received. Researchers found it very rewarding to work with PRPs, their perceptions of patient involvement had evolved in a positive direction and they saw a greater input from PRPs in their future projects.
The substantial role of patients in advancing dissemination (developing understandable patient information, motivating junior researchers, informing patients) was emphasized.(5, 13) These findings are also consistent with a systematic review that showed that the success of PPI relies on the processes of engagement and that the impact of PPI on the people involved is of greater value than on the research.(25) Another study found a very similar impact on researchers involved in Parkinson disease.(26) They reported gaining new knowledge by talking with patients with the condition. This resulted in a better understanding of the issues that really matter to them. Having face-to-face contacts changed their professional values and created a sense of the ‘people’ behind the data. Finally, like in our and many other studies, the researchers gained new skills in communicating with the public. Elsewhere, four PhD students, sharing their experiences with different approaches of PPI, did face some challenges (ensuring funding for PPI and developing group work skills), although they reported a positive effect on each study progression and an improvement in their self-esteem. It also helped them to feel less isolated as doctoral researchers.(27)
Important facilitators for the change in perceptions of all participants were, apart from the extensive support by the project coordinator, the long duration and the initial small size of the pilot, the involvement of immediate stakeholders in decisions regarding the project design, the exchange of realistic, mutual expectations, and regular interim evaluations and subsequent reformulation of objectives. Also starting with only researchers who were intrinsically motivated to experiment with different formats of patient participation led to positive experiences that inspired newcomers. Training sessions started originally as separate events for PRPs and researchers, but participants rapidly decided that they preferred joint workshops. PPI training of researchers is often recommended, although our experiences may imply that the value is overestimated. Training provided top-down and designed by researchers is less productive than providing guidance and coaching on request of any stakeholder and developed in close collaboration with all involved.(28) Finally, the support of the leadership turned out to be a key facilitator. The project was developed bottom-up without a steering group imposing strategies or decisions on the participants. As an example, organizing a speed date meeting to match new research projects (and researchers) with PRPs was a suggestion of one of the participants that was well received by others.
We have learned that patient participation depends highly on the establishment of long term relationships and tailored formats of support and education. The latter are not focused on ‘becoming a researcher’ (proto-professionalisation)(29), but on avoiding risks of tokenism by ensuring meaningful formats of involvement. Our findings confirm the assumption that meaningful involvement of patients – meaning: to be involved in the design, conduct and dissemination of a study - can only emerge when mutual respect, a supportive environment and equal relationships have been carefully established.(14)
This study is based on the dialogue model, as developed by Tineke Abma c.s.(30) According to this theory, patient participation is characterized by mutual learning and creating greater understanding of the perspective of other stakeholders rather than a simply transfer of power.(19, 31) In this regard the often used ladder of participation with increasing levels of influence on the research process is less adequate to study involvement in laboratory research.
We found that PRPs and young researchers preferred the 1:1 partnership which might be seen as incongruent to the EULAR recommendation to have at least two PRPs on a research team.(8) However, a recent pilot in Birmingham, the Student Patient Alliance (SPA), followed this same format. Rheumatology PhD students were put in contact with one or more patient research partners with the aim to informally facilitate patient involvement in their research project and to develop their skills in working and communicating with members of the public. The pilot became a success. Both students and PRPs were enthusiastic and in 2020 the pilot was extended to include all new rheumatology PhD students.(32)
Strength of this study are the duration (three years) and the approach of responsive evaluation, a formative method to demonstrate the impact of a phenomenon from the perspective of the directly involved stakeholders. The participants, both researchers and PRPs, were actively involved in the design of the study, the data collection and interpretation. This created a strong feeling of ownership over the project. The help of a qualified coordinator in collecting data, matching researchers and PRPs ensured the continuity of the research. The use of mixed methods enabled triangulation of findings which increased the transferability of our results.
Representation of the patient perspective, like many studies evaluating PPI, is also a limitation in this study (table 1). The PRPs had a more than average educational level and most were white, female and of higher age. It remains difficult to address the issue of equity and diversity which may require radical other approaches of involvement and recruitment. Another limitation is the fact that we demonstrated the impact of PPI in basic research through a combination of qualitative methods. Further research should quantify the benefits of PPI in basic research, for instance to what extend PRPs contribute to creating more supportive conditions for basic research. Does PPI result in better legislation and less bureaucracy, more research funding, improved recruitment and retention rates, and ultimately better outcomes for patients?
Although the added value of patient involvement seems less obvious in basic research than in clinical research, the potential advantages should not be underestimated. This study shows that researchers and PRPs are positive about the opportunities for meaningful involvement of PRPs in basic research when these opportunities are developed in partnership.