Collaborating with individuals with lived experience to adapt CANMAT clinical depression guidelines into a patient treatment guide: The CHOICE-D co-design process

Abstract

Effective treatment of depression involves collaboration with informed patients and families and appropriate knowledge sharing. We describe here our experience, as a case example, of a collaboration to "translate" a clinical guideline designed for practitioners into an accessible, plainlanguage version that patients and families can use during the care process, both to provide basic educational information and to foster informed discussions with their treatment providers. Content experts in knowledge translation, patient advocacy, patient-oriented research, and psychiatry guided overall project design. Our first step was to identify lived experience writers to join in the codesign and co-writing of the "CHOICE-D Patient and Family Guide to Depression Treatment." A national call for writers attracted 62 applicants, from whom eight individuals with lived experience of depression and writing experience were selected. Individuals subsequently attended a welcoming teleconference, followed by a 1-day workshop designed to provide (a) a detailed overview of the clinician guideline, (b) an opportunity to select what should be included in the Guide, and (c) key principles of knowledge translation/lay writing. Both from the workshop and subsequently through the codesign process, lived experience writers recommended that the Guide address symptoms, effects of illness course on treatment, first-line treatments, safety/side effects, and treatment misconceptions. To promote patient autonomy, question scripts (how and what to ask your treatment provider), self-triaging resources, and treatment selection aids were suggested. Stylistic considerations included use of simple yet hopeful language, brevity, white space, key terms glossary, and graphics. Several strategies were particularly useful to optimize writer engagement in the codesign process: a pre-workshop conference call and circulation of project resources, an in-person workshop to increase content knowledge, structured discussion with co-writers and project leads to develop ideas, and practical training exercises with the provision of feedback. Both during and at the end of the project, writers provided additional recommendations for improving the process, including more in-person meetings, distribution of step-by-step instructions on the writing task, and a key terms glossary of technical terms to support their role. In conclusion, we describe a process with practical tips and reflective feedback on important considerations for engaging persons with lived experience as leaders in the codesign and writing process of lay treatment guidelines. These methods may serve as a model for similar projects in other areas of healthcare.

Keywords: CHOICE-D; depression; lay guidelines; lived experience; patient engagement; treatment.