Authors: Tam J, Lacaille D, Knight A, McQuitty S, English K, Collins J, Davidson E, and Li LC
Presenter: Johnathan Tam
Institution: Arthritis Research Canada
Over the years, patient collaboration has become increasingly popular in research. Patient partners can provide valuable insight, stemming from their own unique experiences, which can vastly enhance the relevance and impact of a study. In the OPERAS (an On-demand Program to EmpoweR Active Self-management) study, we engaged patient partners to develop a website and mobile app to support patients with rheumatoid arthritis at empowering self-care by tracking their disease symptoms, self-management goals, medication use, and physical activity. Drawing from our team’s collective experience as researchers, clinicians, patients, and professors, this paper aims to learn from the experience of patient-researcher partnership in OPERAS.
During the development of OPERAS, we created a framework to guide our interactions with patient partners in meetings. The framework outlined key topics of discussion and questions to promote engagement. These discussions were documented via written notes and also video recorded for future reference. Following the finalized creation and launch of OPERAS, the research staff reflected on the collaboration process by reviewing the written notes and videos, identifying a list of challenges and lessons learned. We then engaged with five patient partners to review our own reflections, evaluate which components of the collaboration were effective, determine areas for improvement, and suggest additional challenges and lessons learned.
From our team’s reflections and discussions with patient partners, the following eight lessons learned were identified as important for effective collaboration: 1) Developing a framework to guide website and app development processes, 2) Involving patient partners in meetings with technology partner as there was interest in the back-end process of how apps are developed and also interest in seeing research team interactions with supervisors, 3) Developing simple flow charts and visuals to ensure clarity in project progress and objectives as the apps can be very complex and it becomes difficult to focus on the entire project scope, 4) Encouraging patient partners to think aloud when testing beta versions so research team members can record everything, 5) Keeping patient partners up-to-date with follow-up emails and updates on app development progress to enhance feedback and suggestions from patient partners, 6) Using plain language in discussions and written documents for patient partners to improve comprehension and accelerate the development process, 7) Learning about a patient partners’ arthritis story and background, and 8) Providing opportunities for both larger group meetings and one on one meetings adds insights and synergies which might not be otherwise realized.
The OPERAS study engaged patient partners with various backgrounds and skills to develop the website and mobile app. Here, we highlight the lessons learned from this partnered research. These results have provided our team with helpful tips in engaging patient partners in future studies. It is our hope that this will further our team’s growth towards working effectively with patient partners.