Treacy Samantha, Martin Steven, Samarutilake Nelum, Van Bortel Tine
Hilary Rodham Clinton School of Law, Swansea University, Swansea, UK.
Cambridge Public Health, Department of Psychiatry, School of Clinical Medicine, University of Cambridge, Cambridge, UK.
Health Justice. 2021 Nov 11;9(1):30. doi: 10.1186/s40352-021-00154-6.
Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons.
To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review.
A systematic scoping review was undertaken following Arksey and O'Malley's (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting.
39 papers were selected for inclusion in the review. The majority of these took a 'participatory' approach to prisoner involvement, which occurred at most stages during the research process except for more 'higher' level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy.
Given the very high risk of bias arising from the available 'evaluations', it was not possible to derive firm conclusions about the effectiveness of PLiP involvement in the research process. In addition, given the state of the evidence base, it was felt that a systematic review would not be feasible until more evaluations were undertaken using a range of methodologies to develop the field further.
患者及公众参与（PPI）在卫生和社会护理研究中越来越普遍，政策层面将其作为提高研究效度的一种手段加以推广。这也适用于在押人员及使用社会护理服务的人员。虽然关于PPI有效性的证据有限，且未找到对其在监狱中应用情况的综述，但鉴于证据基础尚不完善以及参与其中的道德伦理原因，PPI在社区和监狱中仍持续得到倡导。
对关于在押人员参与卫生和社会护理研究的文献进行综述，重点关注：（i）目标；（ii）参与类型；（iii）评估与结果；（iv）障碍与解决办法；（v）开展系统综述的可行性。
按照阿克西和奥马利（《国际社会研究方法杂志》8：19 - 32，2005年）的五阶段框架进行系统的范围综述。截至2020年12月，使用与患者参与及背景相关的检索词，对十个电子数据库进行了全面检索。按照PICO公式创建了一份综述专用电子表格，并采用叙述性综合分析方法来回答研究问题。报告遵循PRISMA指南。
39篇论文被选入综述。其中大多数采用“参与式”方法让囚犯参与研究，这种参与在研究过程的大多数阶段都有发生，但在一些“更高层次”的研究操作（资金申请和项目管理）中除外，且只有一项研究由在押人员主导。很少有研究涉及对在押人员参与情况的评估，且大多是在押人员或研究人员的反思，没有正式或独立分析，并且大多报告有积极影响。在押人员参与的障碍集中在权力差异和监狱官僚作风方面。
鉴于现有“评估”存在很高的偏倚风险，无法就囚犯参与研究过程的有效性得出确凿结论。此外，鉴于证据基础的现状，在使用一系列方法进行更多评估以进一步发展该领域之前，开展系统综述是不可行的。
