Kraft Stephanie A, Porter Kathryn M, Korngiebel Diane M, James Cyan, Constantine Melissa, Kelley Maureen, Capron Alexander M, Diekema Douglas, Lee Sandra Soo-Jin, Cho Mildred K, Magnus David, Wilfond Benjamin S
University of Washington.
Seattle Children's Research Institute.
IRB. 2017 Jul-Aug;39(4):10-16.
Understanding how patients decide whether to enroll in research can help improve educational materials, protocols, and recruitment rates. However, little is known about patients' willingness to participate in research on medical practices (ROMP), or studies comparing interventions within usual care. We assessed willingness to consider participating in ROMP by surveying 1095 adults in the United States, of whom 834 answered at least one open-ended question about their reasons for being willing or unwilling to consider participating in two scenarios involving ROMP. Most respondents were willing to consider participating in the research scenarios. The most commonly cited reasons for being willing to consider participating included benefit to others and oneself; the top reasons for being unwilling to consider participating included belief that the research was unsafe and an unfavorable view of experimentation. Responses also revealed misconceptions about ROMP among both those who were willing and unwilling to consider participating. Because these misconceptions may present an obstacle to recruiting participants in ROMP, there may be a need for educational initiatives to clarify the nature of these types of studies.
了解患者如何决定是否参与研究有助于改进教育材料、研究方案和招募率。然而，对于患者参与医疗实践研究（ROMP）或常规护理中比较干预措施的研究的意愿，我们知之甚少。我们通过对1095名美国成年人进行调查，评估了他们考虑参与ROMP的意愿，其中834人至少回答了一个关于他们愿意或不愿意考虑参与两个涉及ROMP情景的开放式问题。大多数受访者愿意考虑参与研究情景。愿意考虑参与的最常见原因包括对他人和自己有益；不愿意考虑参与的首要原因包括认为研究不安全以及对实验的负面看法。回答还揭示了愿意和不愿意考虑参与的人对ROMP都存在误解。由于这些误解可能会成为招募ROMP参与者的障碍，可能需要开展教育活动来澄清这类研究的性质。
