PDF(Pubmed)
Abstract：
BACKGROUND: An integral aspect of patient engagement in research, also known as patient and public involvement, is appropriately recognising patient partners for their contributions through compensation (e.g., coauthorship, honoraria). Despite known benefits to compensating patient partners, our previous work suggested compensation is rarely reported and researchers perceive a lack of guidance on this issue. To address this gap, we identified and summarised available guidance and policy documents for patient partner compensation.
METHODS: We conducted this scoping review in accordance with methods suggested by the JBI. We searched the grey literature (Google, Google Scholar) in March 2022 and Overton (an international database of policy documents) in April 2022. We included articles, guidance or policy documents regarding the compensation of patient partners for their research contributions. Two reviewers independently extracted and synthesised document characteristics and recommendations.
RESULTS: We identified 65 guidance or policy documents. Most documents were published in Canada (57%, n = 37) or the United Kingdom (26%, n = 17). The most common recommended methods of nonfinancial compensation were offering training opportunities to patient partners (40%, n = 26) and facilitating patient partner attendance at conferences (38%, n = 25). The majority of guidance documents (95%) suggested financially compensating (i.e., offering something of monetary value) patient partners for their research contributions. Across guidance documents, the recommended monetary value of financial compensation was relatively consistent and associated with the role played by patient partners and/or specific engagement activities. For instance, the median monetary value for obtaining patient partner feedback (i.e., consultation) was $19/h (USD) (range of $12-$50/h). We identified several documents that guide the compensation of specific populations, including youth and Indigenous peoples.
CONCLUSIONS: Multiple publicly available resources exist to guide researchers, patient partners and institutions in developing tailored patient partner compensation strategies. Our findings challenge the perception that a lack of guidance hinders patient partner financial compensation. Future efforts should prioritise the effective implementation of these compensation strategies to ensure that patient partners are appropriately recognised.
UNASSIGNED: The patient partner coauthor informed protocol development, identified data items, and interpreted findings.
METHODS: We conducted this scoping review in accordance with methods suggested by the JBI. We searched the grey literature (Google, Google Scholar) in March 2022 and Overton (an international database of policy documents) in April 2022. We included articles, guidance or policy documents regarding the compensation of patient partners for their research contributions. Two reviewers independently extracted and synthesised document characteristics and recommendations.
RESULTS: We identified 65 guidance or policy documents. Most documents were published in Canada (57%, n = 37) or the United Kingdom (26%, n = 17). The most common recommended methods of nonfinancial compensation were offering training opportunities to patient partners (40%, n = 26) and facilitating patient partner attendance at conferences (38%, n = 25). The majority of guidance documents (95%) suggested financially compensating (i.e., offering something of monetary value) patient partners for their research contributions. Across guidance documents, the recommended monetary value of financial compensation was relatively consistent and associated with the role played by patient partners and/or specific engagement activities. For instance, the median monetary value for obtaining patient partner feedback (i.e., consultation) was $19/h (USD) (range of $12-$50/h). We identified several documents that guide the compensation of specific populations, including youth and Indigenous peoples.
CONCLUSIONS: Multiple publicly available resources exist to guide researchers, patient partners and institutions in developing tailored patient partner compensation strategies. Our findings challenge the perception that a lack of guidance hinders patient partner financial compensation. Future efforts should prioritise the effective implementation of these compensation strategies to ensure that patient partners are appropriately recognised.
UNASSIGNED: The patient partner coauthor informed protocol development, identified data items, and interpreted findings.
摘要：
背景：患者参与研究的一个组成部分，也被称为耐心和公众参与，通过补偿适当地承认患者伴侣的贡献(例如，共同作者,酬金）。尽管已知补偿患者伴侣的好处，我们之前的工作表明，补偿很少报道，研究人员认为在这个问题上缺乏指导。为了解决这个差距，我们确定并总结了患者合作伙伴补偿的可用指南和政策文件.
方法：我们按照JBI建议的方法进行了范围审查。我们搜索了灰色文献(谷歌，GoogleScholar）于2022年3月，Overton（国际政策文件数据库）于2022年4月。我们包括文章，关于患者合作伙伴对其研究贡献的补偿的指导或政策文件。两名审阅者独立提取和综合了文档特征和建议。
结果：我们确定了65个指南或政策文件。大多数文件在加拿大出版(57%，n=37)或英国(26%，n=17）。最常见的推荐非经济补偿方法是为患者伴侣提供培训机会(40%，n=26)，并促进患者伴侣出席会议(38%，n=25)。大多数指导文件(95%)建议进行财务补偿(即为他们的研究贡献提供具有货币价值的东西)患者合作伙伴。跨指导文件，经济补偿的建议货币价值相对一致,并且与患者伴侣所扮演的角色和/或具体参与活动相关.例如,获得患者伴侣反馈的中值货币价值(即，咨询)为19美元/小时(美元)(范围为12美元-50美元/小时)。我们确定了一些指导特定人群补偿的文件，包括青年和土著人民。
结论：存在多种公开可用的资源来指导研究人员，患者合作伙伴和机构制定量身定制的患者合作伙伴补偿策略。我们的发现挑战了缺乏指导会阻碍患者伴侣经济补偿的看法。未来的努力应优先考虑这些补偿策略的有效实施，以确保患者合作伙伴得到适当的认可。
■患者伴侣共同作者告知了方案制定，标识的数据项，和解释的发现。
方法：我们按照JBI建议的方法进行了范围审查。我们搜索了灰色文献(谷歌，GoogleScholar）于2022年3月，Overton（国际政策文件数据库）于2022年4月。我们包括文章，关于患者合作伙伴对其研究贡献的补偿的指导或政策文件。两名审阅者独立提取和综合了文档特征和建议。
结果：我们确定了65个指南或政策文件。大多数文件在加拿大出版(57%，n=37)或英国(26%，n=17）。最常见的推荐非经济补偿方法是为患者伴侣提供培训机会(40%，n=26)，并促进患者伴侣出席会议(38%，n=25)。大多数指导文件(95%)建议进行财务补偿(即为他们的研究贡献提供具有货币价值的东西)患者合作伙伴。跨指导文件，经济补偿的建议货币价值相对一致,并且与患者伴侣所扮演的角色和/或具体参与活动相关.例如,获得患者伴侣反馈的中值货币价值(即，咨询)为19美元/小时(美元)(范围为12美元-50美元/小时)。我们确定了一些指导特定人群补偿的文件，包括青年和土著人民。
结论：存在多种公开可用的资源来指导研究人员，患者合作伙伴和机构制定量身定制的患者合作伙伴补偿策略。我们的发现挑战了缺乏指导会阻碍患者伴侣经济补偿的看法。未来的努力应优先考虑这些补偿策略的有效实施，以确保患者合作伙伴得到适当的认可。
■患者伴侣共同作者告知了方案制定，标识的数据项，和解释的发现。
