Developing a patient-reported experience questionnaire with and for people who use drugs: A community engagement process in Vancouver’s Downtown Eastside

People who use drugs (PWUD) frequently have complex health care needs, yet face multiple barriers to accessing services. Involving PWUD in health service design and evaluation can enhance the quality of data collected and ensure policy and practice improvements reflect the expressed needs of the population. However, PWUD remain largely excluded from the evaluation of health services that directly affect their lives, including development of patient-reported experience measures (PREMS) that have gained prominence in health services research and clinical practice. Detailed descriptions of PWUD participation in survey design are notably absent in the literature. In this commentary, we present a case that demonstrates how PWUD can contribute meaningfully to the development of questionnaires that assess patient-reported health care experiences. We describe the development, implementation and outcomes of a process to engage local drug user organizations in the evaluation of a redesign and reorientation of health service delivery in the Downtown Eastside (DTES) neighborhood of Vancouver, Canada. Through this process, participants contributed critical elements to the design of a patient-reported experience measure, including: (1) identifying unmet service needs in the neighborhood; (2) identifying local barriers and facilitators to care; (3) formulating questions on cultural safety; and (4) improving structure, language and clarity of the questionnaire. We highlight lessons learned from the process, reflecting on the strengths, challenges and ethical considerations associated with community-based approaches to questionnaire development. The workshop model presented here illustrates one flexible and promising approach to enabling meaningful participation of PWUD in questionnaire development.