van der Scheer Lieke, Garcia Elisa, van der Laan Anna Laura, van der Burg Simone, Boenink Marianne
Department of Philosophy, Faculty of Behavioural, Management & Social Sciences, University of Twente, Enschede, The Netherlands.
Radboud University Medical Center, Radboud Institute for Health Sciences, IQ Healthcare, Nijmegen, The Netherlands.
Health Care Anal. 2017 Sep;25(3):225-241. doi: 10.1007/s10728-014-0289-0.
The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement ('translation') of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration.
我们在本文中提出的问题是，患者参与是否可能是帮助确定并实现转化性（TR）研究目标的有益方式；如果是，应如何推进。据说TR可确保将基础科学发现更有效地“转化”为相关且有用的临床应用。鉴于患者理应是此类转化的主要受益者，且基于自身经历也具备相关知识，在创新过程早期倾听他们的声音很可能会提高转化的有效性。在解释TR概念是如何产生及其内涵之后，本文通过文献综述展示了为在更广泛意义上促进患者参与医疗保健研究而提出的论据。我们研究这些论据是否以及如何与TR相关论述相关，并识别其中的陷阱和困境。最终，我们得出结论，尝试让患者参与TR可能是值得的，但这种参与的设计需要仔细考量。
