277 General discussion 9 including problem understanding and identification, empathizing with users, clear and effective communication of ideas and concepts, and creative thinking focused on the “why” and “how” of solutions. However, collaboration between two distinct disciplines—medical research and design research—brings its own challenges. Groeneveld et al. identified several challenges that designers face when working in healthcare (21). These challenges stem from the relative unfamiliarity of design research within healthcare research and the medical research culture, which may not always be favourable for the fastpaced, iterative, and flexible design process. As such, collaborating effectively with designers in healthcare requires establishing mutual understandings as the foundation for collaboration. First, both disciplines need to communicate and understand each other’s standards. For example, healthcare researchers should inform designers about the need to obtain medical ethical clearance early in the process, while designers should communicate the iterative nature of the design process and its associated phases (22). Second, both parties should be aware of the regulated environment in which research takes place, which allows little room for improvisation. Establishing contact with patients directly within healthcare settings, without the involvement of treating physicians, can be challenging due to the inherent patient-physician relationship. To overcome this, we recruited people with asthma outside of healthcare clinics (Chapter 2) and utilized social media channels (Chapter 2, Chapter 5). Third, both parties should clearly communicate their expectations regarding the outcomes of the design project, which may not be always a ready to be implemented end-product, from the outset. This begins with understanding the value of the design process as a whole. While presented as distinct challenges, they are all interconnected, stemming from a lack of mutual understanding. Therefore, prior to embarking on a design journey, designers and healthcare researchers and professionals involved should invest time and effort to learn each other’s language, involve academics with experience in both design and medical research, understand the research context and appreciate the value that participatory design brings to the project. Changes in clinical ethics approval and governance To foster a more favourable research environment for participatory design institutional changes are necessary, particularly in clinical ethics approval and governance. Current medical ethical approval practices in the Netherlands primarily focus on 1) the protection of the autonomy and rights of individuals participating in clinical research and 2) the pre-specified study protocols and other documents to assess the potential harm to the participants (23, 24). This approach ensures that studies such as our cluster RCT (chapter 5) and the RCTs included in our Cochrane Review (chapter 6) are conducted in a way that is ethical, safe, reproducible and protects the rights and welfare of the participants. However, this linear approach in which people are considered as subjects on whom research is done and should be protected, is in stark contrast with the co-creative and iterative approach of
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