The PATIENTS Program, School of Pharmacy, University of Maryland, Baltimore, MD 21201, USA.
Department of Radiation Oncology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, 19104, USA.
J Comp Eff Res. 2019 Apr;8(6):441-453. doi: 10.2217/cer-2018-0129. Epub 2019 Apr 5.
Patient engagement often starts after research funding is secured with little or no involvement of patients in the proposal development phase. This paper compares three levels of patient engagement and describes patients' early engagement in research proposal development process and its contemporary relevance to clinical and translational research. Authentic patient engagement is illustrated using an example of an ongoing pragmatic clinical trial. The paper also addresses key patient considerations and questions that have an impact on the proposal development. The final section presents strategies to overcome challenges to the patients' early engagement in research proposal development approach from the perspectives of both patients and researchers. Although the examples are from comparative effectiveness research, strategies discussed can be applied to all clinical and translational research.
患者参与通常在研究资金获得后才开始，而患者在提案制定阶段的参与很少或没有。本文比较了三个层次的患者参与度，并描述了患者在研究提案制定过程中的早期参与及其对临床和转化研究的当代相关性。使用正在进行的实用临床试验示例来说明真正的患者参与。本文还解决了对提案制定有影响的关键患者考虑因素和问题。最后一部分从患者和研究人员的角度提出了克服患者早期参与研究提案制定方法面临的挑战的策略。尽管这些例子来自于比较效果研究，但讨论的策略可以应用于所有临床和转化研究。
