Abstract
Background Foundations in Patient-Oriented Research is a course designed and piloted in Canada to build mutually beneficial relationships for conducting patient-oriented research by ensuring that relevant stakeholders – patients, researchers, health care professionals and health system decision-makers – have a common foundational understanding of patient-oriented research, the research enterprise, and team dynamics. The curriculum was co-developed by a group of patients, researchers, patient engagement experts and curriculum development experts and involved consultations with broader groups of the relevant stakeholders mentioned above. It was designed to be delivered in a ‘co-learning format’ with classes comprised of all stakeholder groups learning together. The purpose of this study was to explore the experiences of individuals involved in the process of co-developing, piloting and revising Foundations in Patient-Oriented Research. Methods An embedded case study was conducted with individuals who were involved in the co-development, pilot and revision of Foundations in Patient-Oriented Research. These individuals took on different roles during the curriculum development process, including project co-lead, developer, facilitator, and patient co-facilitator. The constant comparison method was used to inductively develop themes from the two focus group sessions. Results Discussions from the focus groups revealed the value of co-building the content, co-facilitating the course sessions, and the importance of the co-learning format. The training itself was perceived as valuable and the systematic approach to co-development was perceived as a success. Several barriers were identified, including the amount of resources, time and commitment required to complete the project. There was a notable tension between maintaining the integrity of the content and having the freedom to adapt it to local contexts. Over the course of the project, the project co-leads, developers and facilitators found that their own understanding of patient-oriented research deepened. Conclusions The findings of this study suggest that co-developing a patient-oriented research curriculum increases its quality, uptake and credibility. The co-development process not only resulted in training that benefited the target learners, but also built capacity for patient-oriented research within the project co-leads, developers, facilitators and patient co-facilitators. Our findings and recommendations may provide guidance for other learning and development groups wishing to undertake a similar project.
Original language | English |
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Article number | 7 |
Journal | Research Involvement and Engagement |
Volume | 5 |
Issue number | 1 |
DOIs | |
Publication status | Published - 11 Feb 2019 |
Funding
The authors would like to thank members of the original reference group, Nancy Marlett, Frank Gavin, Vincent Dumez, Elizabeth Robson, and Alicia Raimundo, as well as original members of the content development team, Odie Geiger, Krista Ritchie, and Alexandre Berkesse. The authors would like to acknowledge the SPOR SUPPORT Units, SPOR Networks as well as all other pilot facilitators for their enthusiasm, commitment and time to complete this project: Cris Carter, Helen Chiu, Brian Condran, Béatrice Débarges, Marie-Pierre Gagnon, Carla Heggie, Caroline Jose, Carly Leggett, Michelle Lindberg, Stephanie Mason, Alies Maybee, Janet McCabe, Zarah Monfaredi, Monica Parry, Dawn Richards, Carolyn Shimmin, Jimmy Tan, Wendy Walters, Sennait Yohannes, Sandra Zelinsky and Pierre Zwiegers. Finally, the authors wish to thank Rosa Venuta for her great efforts in leading the early days of this project, Shari Furniss for her generous support in developing the evaluation framework, and Jacquie Dale and Lynn Chiarelli from One World Inc. for supporting various segments of the development process.
Keywords
- Co-production/co-produced research
- Patient and public involvement
- Patient engagement
- Patient-oriented research
- Shared learning
- Training