Boenink Marianne, van der Scheer Lieke, Garcia Elisa, van der Burg Simone
1Department of Philosophy, Faculty of BMS, University of Twente, P.O. Box 217, 7500 AE Enschede, The Netherlands.
Malden, The Netherlands.
Nanoethics. 2018;12(3):181-197. doi: 10.1007/s11569-018-0319-8. Epub 2018 Jul 9.
Biomedical research policy in recent years has often tried to make such research more 'translational', aiming to facilitate the transfer of insights from research and development (R&D) to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for involving patients in (translational) biomedical research aiming to address its main challenges. After reviewing the potential challenges of patient involvement, we formulate three requirements for any method to meaningfully involve patients in (translational) biomedical research. It should enable patients (1) to put forward their experiential knowledge, (2) to develop a rich view of what an envisioned innovation might look like and do, and (3) to connect their experiential knowledge with the envisioned innovation. We then describe how we developed the card-based discussion method 'Voice of patients', and discuss to what extent the method, when used in four focus groups, satisfied these requirements. We conclude that the method is quite successful in mobilising patients' experiential knowledge, in stimulating their imaginaries of the innovation under discussion and to some extent also in connecting these two. More work is needed to translate patients' considerations into recommendations relevant to researchers' activities. It also seems wise to broaden the audience for patients' considerations to other actors working on a specific innovation.
近年来，生物医学研究政策常常试图使此类研究更具“转化性”，旨在促进从研发到医疗保健的知识转移，以造福未来用户。让患者参与生物医学研究的讨论和设计，可能会提高研发及由此产生的创新的质量，从而有助于转化。然而，让患者参与生物医学研究并非易事。本文讨论了一种让患者参与（转化性）生物医学研究的方法的开发，旨在应对其主要挑战。在审视了患者参与的潜在挑战后，我们为任何让患者有意义地参与（转化性）生物医学研究的方法制定了三项要求。它应使患者能够：（1）提出他们的经验性知识；（2）对预想中的创新可能是什么样以及能做什么形成丰富的认识；（3）将他们的经验性知识与预想中的创新联系起来。然后，我们描述了我们如何开发基于卡片的讨论方法“患者之声”，并讨论了该方法在四个焦点小组中使用时在多大程度上满足了这些要求。我们得出结论，该方法在调动患者的经验性知识、激发他们对所讨论创新的想象以及在一定程度上连接这两者方面相当成功。需要做更多工作将患者的考虑转化为与研究人员活动相关的建议。将患者考虑的受众扩大到致力于特定创新的其他行为者似乎也是明智之举。
