Engaging Cancer Patients in Clinical Practice Guideline Development: A Pilot Study

Background: Patient engagement is a key quality component of cancer guideline development; however, the optimal strategy for engaging patients in guideline development remains unclear. The feasibility and efficacy of two patient engagement models was tested by Cancer Care Ontario’s cancer guideline development program, the Program in Evidence-Based Care (PEBC). Methods: In model 1, patients participated in the guideline development process as active members of a working group. In model 2, patients formed a separate consultation group to review project plans and recommendations generated by multiple working groups. Training included online resources (model 1) and an in-person orientation (model 2). The PEBC’s standard patient engagement process acted as a control. The study was conducted for 1 year. Surveys measured the satisfaction of patients and members of the guideline working groups with the process and the outcome of each model. Results: Three guideline projects used model 1 to engage patients, six projects used model 2 to receive feedback, and one project was used as a control group (14 patients total). Most participants, whatever the model, reported satisfaction with their experience. Key challenges to implementation included patient recruitment and long wait times between meetings (model 1), and difficulty focusing on the discussion topic and poor meeting attendance on the part of patients (model 2). Conclusions: The pilot study demonstrated that, although both models are feasible and effective for the engagement of patients in cancer guideline development, modifications are required to optimize their continued interest. The PEBC will use the study results to inform the implementation of a patient engagement strategy for its program.