Hunter Jennifer, Corcoran Katherine, Leeder Stephen, Phelps Kerryn
University of Sydney.
J Empir Res Hum Res Ethics. 2012 Jul;7(3):84-90. doi: 10.1525/jer.2012.7.3.84.
This pilot study sought to identify motivators and barriers to participating in a longitudinal survey; we interviewed patients and practitioners at a multidisciplinary primary care clinic where the proposed project would be based. While altruism motivates participation in medical research, we found that for many potential participants, the opportunity to benefit directly was the primary, and sometimes the only motive to participate or encourage participation in the research project. Patients often wanted direct feedback from their individual results, and they expected to provide consent before the results were forwarded to other parties such as their practitioners. Similarly, some practitioners were more likely to support the project if participation benefited patients directly. Other factors were also identified that influenced the acceptability and perceived risks and benefits of participating. More work is needed to understand these motivators and how patients might benefit directly from participating in health services research, especially when direct medical benefit is not possible.
这项试点研究旨在确定参与纵向调查的动机和障碍；我们在一个多学科初级保健诊所采访了患者和从业者，该诊所将是拟议项目的开展地点。虽然利他主义促使人们参与医学研究，但我们发现，对于许多潜在参与者来说，直接受益的机会是参与或鼓励参与该研究项目的主要动机，有时甚至是唯一动机。患者通常希望从自己的个体结果中得到直接反馈，并且期望在结果被转发给其他各方（如他们的从业者）之前给予同意。同样，如果参与能使患者直接受益，一些从业者更有可能支持该项目。还确定了其他一些影响参与的可接受性以及感知风险和益处的因素。需要开展更多工作来了解这些动机，以及患者如何能从参与卫生服务研究中直接受益，特别是在无法获得直接医疗益处的情况下
