Giving Voice to Patients: Developing a Discussion Method to Involve Patients in Translational Research

• Published in: Nanoethics 2018, Vol.12 (3), p.181-197
• Main Authors: Boenink, Marianne, van der Scheer, Lieke, Garcia, Elisa, van der Burg, Simone
• Format: Article
• Language: English
• Subjects: Biomedical innovation; Biomedical research; Discussion method; Education; Ethics; Experiential knowledge; Innovations; Nanotechnology; Original Paper; Patient involvement; Patients; Philosophy; Philosophy of Science; Philosophy of Technology; R&D; Research & development; Research and development; Translational research
• ISSN: 1871-4757; 1871-4765
• DOI: 10.1007/s11569-018-0319-8

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.