How to build a framework to establish a patient research partner network in rheumatology research: a report of a 2-year implementation project
A strategy plan was developed by the two PRP coordinators following European Alliance of Associations for Rheumatology (EULAR) guidelines and publicly available information. Moreover, we consulted with two PRP experts at the European level (MdW and FK), who provided valuable advice on best practices and the content of the courses and events. We defined responsibilities for the PRP coordinators in this initiative . To enhance effective collaboration between PRPs and researchers, we adopted principles such as speaking up, learning from one another, providing feedback and optimising transparent communication. At all times of interaction, we encouraged PRPs and researchers to speak openly and ask questions. We provided anonymous surveys with suggestion boxes to ensure everyone could offer feedback. To maintain clear communication, we established channels such as email updates and newsletter to keep the network informed. Box 1 Responsibilities of patient research partner (PRP) coordinators in our initiative Establish relationships with patient organisations. Organise kick-off events to build up the network. Recruit and select PRPs. Organise training for PRPs and researchers. Organise events to promote strong collaboration and direct dialogue. Match PRPs with project requests from researchers. Match researchers with project requests from PRPs. Facilitate communication between PRPs and researchers. Organise logistics around PRP involvement. Monitoring of PRP involvement.   Several patient organisations in the field of rheumatology were contacted to communicate our initiative to patients and improve the recruitment of patient representatives for the PRP network. Additionally, patients were informed about the initiative through flyers distributed during consultations at our clinic. We also organised two open days in our research laboratory for patients with rheumatic diseases, family members and patient organisations. The aim was to further promote the PRP initiative, provide insight into researchers’ work and engage participants in a long-term collaboration. Each event with a duration of 3 hours attracted over 40 participants. The clinic director, the PRP coordinators and group leaders at the laboratory talked about their current research projects, guided through the facilities and displayed their daily work at the laboratory. During these events, the PRP concept was explained, including its definition, requirements, roles and tasks, along with instructions on becoming a PRP. As a result, 66 people with rheumatic musculoskeletal diseases joined our PRP network.   Based on existing training formats, we developed both online (1 hour long) and in-person training for PRPs in collaboration with the clinical trial centre (CTC). This 3-hour in-person training covered foundational topics such as research principles, basic and translational research, evidence-based medicine and current research projects in our rheumatology department. The speakers (PRP coordinators and education manager of CTC (SL)) provided PRPs with the necessary knowledge and skills to contribute to clinical trial studies. Topics included clinical trial basics, PRP roles and responsibilities, study endpoints, ethical considerations, patient confidentiality and communication strategies for working with research teams and stakeholders. The in-person training included shared experiences and practical knowledge from two experienced PRPs (one in the field of rheumatology and one in the field of pneumology). We also informed our network about existing courses for PRPs (eg, European Patients Academy on Therapeutic Innovation (EUPATI) or EULAR). Similarly, researchers received training on PRP involvement concepts, PRP roles, their potential tasks and expectations, as well as on the EULAR recommendations. These training sessions were conducted during both online and onsite research meetings. In total, we trained 45 PRPs and 30 researchers.   To match PRPs with researchers, we developed a secure matchmaking database tool in collaboration with the CTC. This tool incorporated disease-specific information as well as language skills, research experience, expertise and interests from both PRPs and researchers, facilitating better alignment for specific projects. When registering PRPs to a network, consent for data collection and confidentiality were clearly communicated and agreed upon by the patient representatives. We ensured that PRP data are stored and shared securely in the database. 27 PRPs registered, including 6 males and 21 females with an average age of 55 years. The different diseases were rheumatoid arthritis (6 PRPs), psoriatic arthritis (6 PRPs), spondyloarthritis (4 PRPs), systemic sclerosis (4 PRPs), Ehlers-Danlos syndrome (2 PRPs) and Sjögren’s syndrome (5 PRPs). Our network also included representatives from four patient organisations (Rheumaliga, Swiss Clinical Quality Management in Rheumatic Diseases (SCQM), Schweizerische Vereinigung der Sklerodermie-Betroffenen (SVS), Ehlers-Danlos Netz Schweiz in Switzerland). To encourage early PRP involvement and projects initiated by PRPs, we used an interactive tool (Poll Unit) to allow project suggestions, feedback and voting on proposals. In addition, the PRP coordinators also hosted a speed-dating event to facilitate exchanges between 20 PRPs and 20 researchers, fostering meaningful dialogue about current or future projects. During four individual 20-min interviews, patients had the opportunity to discuss with researchers about their disease and impact on their daily life and researchers discussed with patients their current and future research projects. To ensure a targeted and useful exchange, PRPs were assigned to researchers in the relevant fields of expertise. In addition, suggested questions for both PRPs and researchers were prepared by the PRP coordinators in case the discussion became challenging. Over a period of 2 years, we were approached by researchers to find PRP for 15 collaborative projects, including 3 clinical trials and 9 in translational research. Each project involved PRPs from the research phase, at the pre-submission stage. Two to six PRPs were included in each project and were engaged in various tasks such as reviewing project proposals for funding applications, drafting lay summaries, improving presentations for clarity, identifying research gaps, broadening project objectives through brainstorming sessions and formulating new research questions. One translational research project was initiated by PRPs. Four projects had funds for compensating PRPs.   PRP coordinators helped with the selection of PRPs and researchers and managed logistics for meetings and trainings. Researchers provided estimated time commitments for PRP involvement including the estimated personal work time and the number and duration of the scheduled meetings as well as information on meeting modalities. To ensure good cooperation during the project, we held kick-off meetings before the start of each project to clarify mutual expectations from both sides as well as the requested tasks. These meetings were held between researchers, PRP coordinators and the involved PRPs. Coordinators supported PRPs by providing tailored glossaries and lay summaries and by monitoring project involvement, gathering feedback, assessing outcomes and identifying areas for improvement.   To evaluate the impact of our initiative, a survey among PRPs and researchers was conducted. 52 PRPs and 24 researchers completed the questionnaire. Before the initiative, most of the PRPs had not heard of the PRP concept and had never participated in research. Overall, the trainings were considered useful by PRPs who took part in the training and improved their knowledge about the role and tasks of a PRP. The majority felt more capable and confident to get involved in a research project after the training course. Nearly all matched PRPs participated in projects, with most reporting a positive impact on the project. Many would recommend PRP involvement to other patients. The positive impact on the project was notably facilitated by the involvement of PRP coordinators (available glossaries, open communication with coordinators who were accessible to facilitate logistics and clarify expectations/tasks when needed). Furthermore, the education of researchers helped them understand the concept of PRPs and be open to collaboration as equal partners with PRP. Although 66 patients joined our PRP network, only 45 PRPs participated in the training sessions and 27 were registered in our matchmaking database tool. Barriers to PRP involvement included medical or logistical reasons (worsening of their health condition, lack of time, difficulties with English and digital skills, long commuting distances and fear of not being sufficiently qualified for the requested tasks). PRPs who were unable to attend the training continue to receive regular updates on our initiative (newsletter), ongoing projects and collaboration requests. This highlights the need to improve logistical conditions to encourage PRP involvement and their diversity (support in English, in digital skills, flexible meeting times, improvement in PRP training). Regarding PRP training, both the EUPATI and EULAR courses are available, in addition to some national courses. The EUPATI course focuses on medicine development and authorisation, with a growing number of national EUPATI branches offering training in local languages. In contrast, the EULAR course is broader, covering topics such as developing recommendations, epidemiology, reviewing research grant applications, outcome measurement and dissemination. This comprehensive course is conducted in English and prepares PRPs for participation in international research projects. The advantage of national courses is that they make training more accessible to individuals who may have difficulty with the English language. Researchers valued PRP involvement for highlighting perspectives that might otherwise be overlooked, helping shape patient-centred research questions. This viewpoint provides a practical five-steps framework to build a PRP network in basic, translational and clinical rheumatology research. It highlights the crucial role of PRP coordinators in fostering collaboration between PRPs and researchers and reducing the risk of tokenism. In our case, one nurse expert and one physician researcher took on the role of PRP coordinators. We found significant benefits to have two PRP coordinators with distinct backgrounds and expertise. The nurse expert primarily handled marketing, event logistics, outreach to patient organisations and direct communication with PRPs. The physician researcher oversaw strategic decision-making for the initiative, established partnerships with international PRP experts and liaised with researchers and management. However, the role of PRP coordinator could also be taken up by one of the PRPs as suggested by the last recommendations. This experience confirms the difference between providing support to PRPs and facilitating collaborative research, the latter requiring the establishment of helpful conditions for setting up PRP partnerships. There is strong evidence that education and training of PRPs and researchers increase the quality of the collaboration in research projects. We built a general training tailored to the needs of PRPs and researchers, and a specific training for PRPs involved in clinical trials. We also used guidance from two experienced PRPs (one in the rheumatology field and the other in pneumology). Given our positive experience involving the CTC and expert patient from another field, we suggest developing a multidisciplinary and complementary training programme for PRPs to integrate diverse experiences from both research experts (eg, not just in the field of rheumatology and regulation) and experienced PRPs. Early training for researchers on PRP benefits and recommendations is also essential to address potential challenges in PRP involvement, such as difficulties in communicating scientific terminology, knowledge disparities and limited PRP access. In our experience, we observed a significant increase in the number of projects involving PRPs after educating researchers (15 projects compared with fewer than 5 before our initiative). This underscores the importance of training doctors and researchers early in their careers, so they integrate PRPs into their research projects and adopt this practice as a standard approach. Events like our speed-dating session promoted open communication, allowing researchers to understand patient perspectives and identify research gaps. Therefore, we strongly recommend developing events such as speed dates, open days and workshops that facilitate direct interaction and foster lasting relationships between PRPs and researchers. A challenge in our initiative was securing appropriate funding for PRP activities. In only four projects, we managed to secure funds for PRPs. Several reasons could be mentioned: compensation was not prioritised in the research budget, the research project had no funding (eg, observational cohort studies) and, above all, we were confronted with funding shortages during the pre-submission phase. When a project was not funded, PRPs were not compensated for their contributions. As funding for PRPs is essential, it is also crucial to develop a sustainable structure for funding and to provide researchers with adequate funds and resources to develop supportive materials (eg, lay summaries, glossaries, background information) to prevent tokenism. In this short period of 2 years, one PRP-initiated idea has developed into a translational research project. This demonstrates that the establishment of helpful conditions for setting up PRP partnerships, could lead to effective collaboration also in translational setting. However, to allow a sustainable collaboration between all stakeholders over the years, regular evaluation and adaptation of the partnership is crucial. To this aim, we plan to establish a structured feedback process with one-on-one meetings with PRPs and researchers one to two times per year to assess the collaboration and make necessary adjustments. Additionally, a survey will be conducted at the end of each project to evaluate the collaboration and identify areas for improvement. In conclusion, these findings hold promise for increased collaboration between PRPs and researchers in the field of rheumatology research. We anticipate that our experience will shape upcoming partnerships between PRPs and researchers in rheumatology.   