RESUMEN
BACKGROUND: Medical societies and funding agencies strongly recommend that patients be included as partners in research publications and grant applications. Although this "top-down" approach is certainly efficient at forcing this new and desirable type of collaboration, our past experience demonstrated that it often results in an ambiguous relationship as not yet well integrated into the cultures of either patients' or the researchers'. The question our group raised from this observation was: "How to generate a cultural shift toward a fruitful and long-lasting collaboration between patients and researchers? A "bottom-up" approach was key to our stakeholders. The overall objective was to build a trusting and bidirectional-ecosystem between patients and researchers. The specific objectives were to document: 1) the steps that led to the development of the first patient-partner strategic committee within a research center in the Province of Québec; 2) the committee's achievements after 3 years. METHODS: Eighteen volunteer members, 12 patient-partners and 6 clinician/institutional representatives, were invited to represent the six research themes of the Centre de recherche du CHU de Sherbrooke (CRCHUS) (Quebec, Canada). Information on the services offered by Committee was disseminated internally and to external partners. Committee members satisfaction was evaluated. RESULTS: From May 2017 to April 2020, members attended 29 scheduled and 6 ad hoc meetings and contributed to activities requiring over 1000 h of volunteer time in 2018-2019 and 1907 h in the 2019-2020 period. The Committee's implication spanned governance, expertise, and knowledge transfer in research. Participation in these activities increased annually at local, provincial, national and international levels. The Patient-Partner Committee collaborated with various local (n = 7), provincial (n = 6) and national (n = 4) partners. Member satisfaction with the Committee's mandate and format was 100%. CONCLUSIONS: The CRCHUS co-constructed a Patient-Partner Strategic Committee which resulted in meaningful bilateral, trusting and fruitful collaborations between patients, researchers and partners. The "bottom-up" approach - envisioned and implemented by the Committee, where the expertise and the needs of patients complemented those of researchers, foundations, networks and decision-makers - is key to the success of a cultural shift. The CRCHUS Committee created a hub to develop the relevant intrinsic potential aimed at changing the socio-cultural environment of science.
RESUMEN
Objectives: Hospital-based health technology assessment (HB-HTA) needs to consider all relevant data to help decision making, including patients' preferences. In this study, we comprehensively describe the process of identification, refinement and selection of attributes and levels for a discrete choice experiment (DCE). Methods: A mixed-methods design was used to identify attributes and levels explaining low back pain (LBP) patients' choice for a non-surgical treatment. This design combined a systematic literature review with a patients' focus group, one-on-one interactions with experts and patients, and discussions with stakeholder committee members. Following the patient's focus group, preference exercises were conducted. A consensus about the attributes and levels was researched during discussions with committee members. Results: The literature review yielded 40 attributes to consider in patients' treatment choice. During the focus group, one additional attribute emerged. The preference exercises allowed selecting eight attributes for the DCE. These eight attributes and their levels were discussed and validated by the committee members who helped reframe two levels in one of the attributes and delete one attribute. The final seven attributes were: treatment modality, pain reduction, onset of treatment efficacy, duration of efficacy, difficulty in daily living activities, sleep problem, and knowledge about their body and pain. Conclusion: This study is one of the few to comprehensively describe the selection process of attributes and levels for a DCE. This may help ensure transparency and judge the quality of the decision-making process. In the context of a HB-HTA unit, this strengthens the legitimacy to perform a DCE to better inform decision makers in a patient-centered care approach.