What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings
What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings
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DOI：
10.1111/hex.12979
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发表时间：
2019-12-04
影响因子：
3.2
通讯作者：
Esmail, Laura
中科院分区：
文献类型：
--
作者：
Hemphill, Rachel;Forsythe, Laura P.;Esmail, Laura
背景美国研究机构越来越多地支持患者和利益相关者参与健康研究，目的是产生更有用、相关和以患者为中心的证据，更好地满足现实世界的临床需求。以患者为中心的成果研究所（PCRI）使患者，家庭护理人员和其他卫生保健利益攸关方，包括临床医生，付款人和政策制定者，作为积极的合作伙伴，优先考虑，设计，开展和传播研究，作为一项关键战略，为卫生保健决策提供有用的证据。目的为有效的参与实践和政策提供信息，我们试图了解是什么促使患者和护理人员作为合作伙伴参与PCORI资助的研究项目，以及这种参与如何改变他们的生活。我们对255名患者，家庭护理人员以及来自倡导和社区组织的个人的开放式调查问卷进行了主题分析，这些人作为合作伙伴参与了139个PCORI资助的研究项目，重点关注一系列健康状况。合作伙伴参与研究的动机主要是为了造福他人，包括希望改善患者的生活和支持有效的保健干预措施。除了感觉他们做出了积极的改变之外，许多合作伙伴还报告了参与的直接好处，例如新的关系和改善的健康习惯。讨论和结论通过确定患者和护理人员参与研究伙伴关系的动机以及他们从经验中得到的东西，我们的研究可以帮助研究团队和组织吸引合作伙伴，并培养更满意和可持续的伙伴关系。我们的研究结果还进一步证明，参与有利于作为伙伴参与的人，加强了更广泛参与的理由。
Background US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient-centered evidence better aligned with real-world clinical needs. The Patient-Centered Outcomes Research Institute (PCORI) engages patients, family caregivers and other health-care stakeholders, including clinicians, payers and policymakers, as active partners in prioritizing, designing, conducting and disseminating research as a key strategy to produce useful evidence for health-care decision making. Objective To inform effective engagement practices and policies, we sought to understand what motivates patients and caregivers to engage as partners on PCORI-funded research projects and how such engagement changed their lives. Methods We conducted thematic analysis of open-ended survey responses from 255 patients, family caregivers and individuals from advocacy and community-based organizations who engaged as partners on 139 PCORI-funded research projects focusing on a range of health conditions. Results Partners' motivations for engaging in research were oriented primarily towards benefiting others, including a desire to improve patients' lives and to support effective health-care interventions. In addition to feeling they made a positive difference, many partners reported direct benefits from engagement, such as new relationships and improved health habits. Discussion and Conclusions By identifying patient and caregiver motivations for engaging in research partnerships and what they get out of the experience, our study may help research teams and organizations attract partners and foster more satisfying and sustainable partnerships. Our findings also add to evidence that engagement benefits the people involved as partners, strengthening the case for more widespread engagement.