Brouwers M C, Vukmirovic M, Spithoff K, Zwaal C, McNair S, Peek N
Department of Oncology, McMaster University and the Escarpment Cancer Research Institute, Hamilton.
Program in Evidence-Based Care, Cancer Care Ontario, Hamilton; and.
Curr Oncol. 2018 Aug;25(4):250-256. doi: 10.3747/co.25.3943. Epub 2018 Aug 14.
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).
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.
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).
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.
患者参与是癌症指南制定的关键质量要素；然而，让患者参与指南制定的最佳策略仍不明确。安大略癌症护理组织的癌症指南制定项目——循证护理项目（PEBC）对两种患者参与模式的可行性和有效性进行了测试。
在模式1中，患者作为工作组的积极成员参与指南制定过程。在模式2中，患者组成一个单独的咨询小组，以审查多个工作组制定的项目计划和建议。培训包括在线资源（模式1）和面对面培训（模式2）。PEBC的标准患者参与过程作为对照。该研究持续了1年。通过调查来衡量患者和指南工作组成员对每个模式的过程和结果的满意度。
三个指南项目采用模式1让患者参与，六个项目采用模式2获取反馈，还有一个项目用作对照组（总共14名患者）。无论采用哪种模式，大多数参与者都对自己的体验表示满意。实施过程中的主要挑战包括患者招募以及会议之间的长时间等待（模式1），以及难以聚焦讨论主题和患者参会率低（模式2）。
该试点研究表明，虽然两种模式在让患者参与癌症指南制定方面都是可行且有效的，但需要进行改进以优化他们持续参与的积极性。PEBC将利用研究结果为其项目的患者参与策略的实施提供参考。
