Health Policy PhD Program, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.
Public and Patient Engagement Collaborative, McMaster University, Hamilton, Ontario, Canada.
Health Expect. 2024 Feb;27(1):e13971. doi: 10.1111/hex.13971.
There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one-time honorarium, salary) and amount. Further, broad-based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation.
This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self-identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open-text comments in addition to menu-based and scaled response options. Basic frequencies were performed for all questions and open-text comments were analyzed through inductive qualitative content analysis.
A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open-text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships.
Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts.
Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co-authors of this manuscript. The survey was co-designed and pilot tested with patient partners and survey participants were patient partners.
在加拿大的卫生系统环境中，患者、家属和照护者作为顾问、合作者和伙伴的角色日益重要。然而，这种角色的补偿并未系统化。提供补偿时，其类型（例如一次性酬金、薪资）和金额也有所不同。此外，患者伙伴对补偿的广泛看法仍不得而知。我们旨在描述患者伙伴获得的补偿类型和频率，以及他们对补偿的态度。
本研究使用了来自加拿大患者伙伴研究（CPPS）调查的数据。该调查收集了自认为是在加拿大卫生系统中工作的患者伙伴的经验和观点。有三个问题是关于补偿的，询问参与者获得了哪些类型的补偿，他们是否拒绝过补偿，以及他们是否感到得到了充分补偿。后两个问题除了菜单式和量表式的回答选项外，还包括了开放式文本的评论。对所有问题和开放式文本评论都进行了基本频率分析，并通过归纳定性内容分析对其进行了分析。
共有 603 人参与了 CPPS 调查。大多数受访者从未或很少获得过薪资（81%）、酬金（64%）、礼品卡（80%）或实物礼物（93%），而有一半的人至少有时会获得会议注册和费用补偿。共有 129 名（26%）499 名受访者报告拒绝了补偿。在 511 名受访者中，有一半人总是或经常感到得到了充分补偿，而另一半人则只是有时、很少或从未感到得到了充分补偿。开放式文本评论揭示了对补偿的积极、矛盾和消极态度。这些态度是由他们对自己角色的看法、回馈卫生系统的意愿、认可感、实际考虑、公平和公平价值观以及问责制关系等因素构成的。
我们的研究结果证实，加拿大的补偿并未标准化。一半的调查受访者经常感到补偿不足。患者伙伴对什么是充分补偿有不同的看法，包括个人考虑因素，如对志愿服务的偏好，以及更广泛的考虑因素，如促进患者伙伴关系中的公平性。组织应努力确保补偿实践清晰、透明，并关注患者伙伴的独特背景。
两位患者伙伴是 CPPS 研究团队的成员，他们全程参与了从项目构思到知识转化的所有研究阶段。他们是这份手稿的合著者。该调查是与患者伙伴共同设计和试点测试的，调查参与者也是患者伙伴。
