OP0286-PARE MYTHS VS REALITIES: AN HONEST FEEDBACK FROM THE SCIENTIFIC COMMUNITY ON COLLABORATION WITH PATIENTS PARTNERS IN THE NECESSITY RESEARCH PROJECT
Authors: C. Bouillot, A. Piatrova
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> NECESSITY project (NEw Clinical Endpoints in primary Sjögren's Syndome, an Interventional Trial based on stratifYing patient), public-private European consortium gathers 25 partners: 20 academics, 4 pharmaceuticals companies and 1 patient association. Patients from the partner patient association, and 8 patient partners across European countries involved in the NECESSITY project constitute the Patient Advisory Group (PAG). The PAG is involved in 6 work packages out of 10, where they add value and bring forward their unique experience and expertise to decisions around Sjögren's disease within the consortium. Whether by choice or by obligation, various research projects across the research community now increasingly call on the expertise of patients' partners. This distinctive collaboration, where patients and researchers work as partners, is a recent and undoubtedly challenging initiative for both academic clinicians and pharmaceutical companies. What are the genuine opinions of the health researchers and pharmaceutical industry regarding this collaboration? <h3>Objectives:</h3> The objective of this survey was to draw up an honest and unfiltered assessment of this collaboration from the side of the scientific community and to identify obstacles and areas for improvement. <h3>Methods:</h3> A questionnaire was sent out by e-mail to 47 participants representing the 24 NECESSITY partners, for whom the anonymity of responses was guaranteed. The first 4 questions were proposed as closed questions, mainly to shorten the overall response time of the survey. The last two questions were open-ended, in order to gather information that is more precise and to be able to qualitatively explain the answers to questions 1 to 4. <h3>Results:</h3> We received 21 usable responses, i.e. 44,7% of all submissions: The two open-ended questions on the challenges and benefits of collaborating with patients elicited 19 and 18 free comments respectively. About challenges, the main ones identified included differences in perspectives and perceptions of the disease, the need to go beyond scientific considerations in the strict sense, to really take into consideration the patients' opinions and implement their ideas. Another concern was to ensure that patients find their place within the consortium amongst scientists, about the time sometimes needed to explain scientific aspects of the project to ensure an effective collaboration. Some responders pointed out the heterogeneity of Sjögrens which requires many patients to capture the reality of the disease. In regard to the benefits of working with patient partners, it is noteworthy, that 14 respondents favoured validating unmet needs, incorporating the unique, real-life perspective of patients, especially concerning symptoms and care expectations. Respondents emphasized the importance of community dissemination, research legitimacy, and stakeholders' endorsement assistance. Finally, two respondents expressed that patient partners provided moral support, boosted motivation, and retain empathy. <h3>Conclusion:</h3> It is extremely encouraging to note in this survey that 20 out of 21 respondents are willing to seek out patient partners in the future, without being forced to do so. It also seems to be clear that most research professionals who took part in this survey attach great importance to patients' experience in validating and legitimizing clinical research-oriented evaluation criteria. The reported benefits are multifold, and patients are seen as genuine research partners. The challenges identified are important for future projects, to establish the legitimacy of patients and facilitate their inclusion as partners in research projects. Differences in perspectives do not appear to us here as a challenge, but as a benefit to research. Even though the results of the survey are based on a small sample, this collaboration within the NECESSITY consortium seems to have been a success, and we hope that this collaborative model will continue to develop further as patient partners and researchers work with the same objectives: to respond to unmet needs, both from the patient's and the medical community perspective. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Acknowledgements:</h3> We thank the Necessity Consortium: Necessity-h2020.eu This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement N°806975. This JU receives support from the European Union's Horizon 2020 research and innovation programme and EFPIA. The present communication reflects only the author's view and the JU is not responsible for any use that may be made of the information it contains. <h3>Disclosure of Interests:</h3> <b>None declared.</b>