认识患者合作伙伴对健康研究的贡献：对已报道实践的系统评价
Recognizing patient partner contributions to health research: a systematic review of reported practices.
作者信息
Fox Grace, Lalu Manoj M, Sabloff Tara, Nicholls Stuart G, Smith Maureen, Stacey Dawn, Almoli Faris, Fergusson Dean A
机构信息
School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada.
Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON, Canada.
出版信息
Res Involv Engagem. 2023 Sep 9;9(1):80. doi: 10.1186/s40900-023-00488-5.
BACKGROUND
Patient engagement in research refers to collaboration between researchers and patients (i.e., individuals with lived experience including informal caregivers) in developing or conducting research. Offering non-financial (e.g., co-authorship, gift) or financial (e.g., honoraria, salary) compensation to patient partners can demonstrate appreciation for patient partner time and effort. However, little is known about how patient partners are currently compensated for their engagement in research. We sought to assess the prevalence of reporting patient partner compensation, specific compensation practices (non-financial and financial) reported, and identify benefits, challenges, barriers and enablers to offering financial compensation.
METHODS
We conducted a systematic review of studies citing the Guidance for Reporting the Involvement of Patients and the Public (GRIPP I and II) reporting checklists (October 2021) within Web of Science and Scopus. Studies that engaged patients as research partners were eligible. Two independent reviewers screened full texts and extracted data from included studies using a standardized data abstraction form. Data pertaining to compensation methods (financial and non-financial) and reported barriers and enablers to financially compensating patient partners were extracted. No formal quality assessment was conducted since the aim of the review is to describe the scope of patient partner compensation. Quantitative data were presented descriptively, and qualitative data were thematically analysed.
RESULTS
The search identified 843 studies of which 316 studies were eligible. Of the 316 studies, 91% (n = 288) reported offering a type of compensation to patient partners. The most common method of non-financial compensation reported was informal acknowledgement on research outputs (65%, n = 206) and co-authorship (49%, n = 156). Seventy-nine studies (25%) reported offering financial compensation (i.e., honoraria, salary), 32 (10%) reported offering no financial compensation, and 205 (65%) studies did not report on financial compensation. Two key barriers were lack of funding to support compensation and absence of institutional policy or guidance. Two frequently reported enablers were considering financial compensation when developing the project budget and adequate project funding.
CONCLUSIONS
In a cohort of published studies reporting patient engagement in research, most offered non-financial methods of compensation to patient partners. Researchers may need guidance and support to overcome barriers to offering financial compensation.
背景
患者参与研究是指研究人员与患者（即有实际经历的个人，包括非正式护理人员）在开展或进行研究过程中的合作。向患者合作伙伴提供非金钱补偿（如共同署名、礼物）或金钱补偿（如酬金、薪资），可以体现对患者合作伙伴时间和精力的认可。然而，目前对于患者合作伙伴参与研究后如何获得补偿知之甚少。我们试图评估报告患者合作伙伴补偿情况的普遍性、所报告的具体补偿做法（非金钱和金钱补偿），并确定提供金钱补偿的益处、挑战、障碍和促进因素。
方法
我们对引用《患者和公众参与报告指南》（GRIPP I和II）报告清单（2021年10月）的研究进行了系统综述，检索范围为科学网和Scopus数据库。将患者作为研究合作伙伴的研究符合纳入标准。两名独立评审员筛选全文，并使用标准化数据提取表从纳入研究中提取数据。提取与补偿方法（金钱和非金钱）以及报告的对患者合作伙伴进行金钱补偿的障碍和促进因素相关的数据。由于综述的目的是描述患者合作伙伴补偿的范围，因此未进行正式的质量评估。定量数据进行描述性呈现，定性数据进行主题分析。
结果
检索到843项研究，其中316项研究符合纳入标准。在这316项研究中，91%（n = 288）报告向患者合作伙伴提供了某种形式的补偿。报告的最常见非金钱补偿方式是在研究成果中进行非正式致谢（65%，n = 206）和共同署名（49%，n = 156）。79项研究（25%）报告提供了金钱补偿（即酬金、薪资），32项研究（10%）报告未提供金钱补偿，205项研究（65%）未报告金钱补偿情况。两个关键障碍是缺乏支持补偿的资金以及缺乏机构政策或指导。两个经常报告的促进因素是在制定项目预算时考虑金钱补偿以及有充足的项目资金。
结论
在一组报告患者参与研究的已发表研究中，大多数向患者合作伙伴提供了非金钱补偿方式。研究人员可能需要指导和支持来克服提供金钱补偿的障碍。
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