British Columbia Centre on Substance Use, 400-1045 Howe Street, Vancouver, BC, V6Z 2A9, Canada; Interdisciplinary Studies, University of British Columbia, 270 2357 Main Mall, Vancouver, BC, V6Z 1Y6, Canada.
British Columbia Centre on Substance Use, 400-1045 Howe Street, Vancouver, BC, V6Z 2A9, Canada; Faculty of Health Sciences, Simon Fraser University, 8888 University Drive, Burnaby, BC, V6Z 1Y6, Canada.
Int J Drug Policy. 2018 Sep;59:16-23. doi: 10.1016/j.drugpo.2018.06.003. Epub 2018 Jun 29.
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.
吸毒者（PWUD）通常有复杂的医疗保健需求，但在获得服务方面面临多种障碍。让 PWUD 参与卫生服务设计和评估可以提高收集数据的质量，并确保政策和实践的改进反映出该人群的表达需求。然而，PWUD 在直接影响他们生活的卫生服务评估中仍然被大量排除在外，包括制定患者报告体验测量（PREMS），这些措施在卫生服务研究和临床实践中已经得到了重视。在文献中，很少详细描述 PWUD 参与调查设计的情况。在这篇评论中，我们提出了一个案例，展示了 PWUD 如何为评估直接影响他们生活的卫生服务的问卷的开发做出有意义的贡献。我们描述了一个在加拿大温哥华市中心东区（DTES）进行的参与过程，该过程旨在让当地的吸毒者组织参与评估卫生服务提供的重新设计和重新定位。通过这个过程，参与者为患者报告的体验测量的设计贡献了关键要素，包括：（1）确定社区中未满足的服务需求；（2）确定当地护理的障碍和促进因素；（3）制定关于文化安全的问题；以及（4）改善问卷的结构、语言和清晰度。我们强调了从这个过程中吸取的经验教训，反思了与社区为基础的问卷开发方法相关的优势、挑战和伦理考虑。这里提出的研讨会模式展示了一种灵活而有前途的方法，使 PWUD 能够在问卷开发中进行有意义的参与。
