278 9 Chapter 9 participatory design in which people’s lived experience, expertise and personal perspective are considered as a source of knowledge which informs the next design steps and for which reciprocity and equal power between researcher and participant is required (25). Consequently, definitions of ‘benefits and risks’ differ between a classical medical and participatory design viewpoint. Participatory design approaches ‘benefits’ as a right to have a seat at the table and ensure a fair chance to participate and ‘risk’ of not being able to participate. Conversely, classical medical viewpoints perceive study procedures as potentially harmful to an individual (25). Hence, for participatory design to benefit healthcare, clinical ethics approval should provide room for adaptation, facilitating a fast-paced and iterative process of data collection, analysis, and reflection. Thus, medical ethical review approvals should establish the framework within which participatory design research can be performed, leaving sufficient room for flexibility, deviations from initial plans and adaptation of study methods and procedures to benefit the overall objective. Essentially, this would broaden the view on ‘participants’ from an individual on whom research is ‘done’, to an individual who is actively engaged in designing and implementing the research or design process. We believe that this viewpoint benefits the individuals involved, enhances the socio-cultural movement of involving patients in clinical research, and promotes empowerment and ownership, an essential aspect of modern healthcare. To bring about changes in clinical ethics approval and governance, ethical principles of respect for persons, risk and harms should be evaluated in a new light. As such, we echo Goodyear’s words and encourage medical ethical committees to acknowledge and embrace the diversity of research (22). This can be achieved by training ethics board members on various research study designs, including professional expertise in the review process, fostering discussions and debates among review boards, researchers, and research participants, and helping board members understand the empowering and reciprocal relationship between researchers and the people involved (22, 25). TAKE HOME MESSAGES | THEME 2 • Healthcare researchers have a responsibility to do their absolute best to help end-users to articulate their needs. These often reside in the deeper layers of knowledge. This means going beyond the traditional methods of interviews and observations. • Participatory design methods and tools are useful methods to reveal deeper layers of knowledge and help people articulate their needs. Researchers should decide on what tools and techniques to use based on the purpose and the context and tailored to fit the target population. • Meaningful involvement requires accommodating the characteristics and potential barriers of participants, especially those with limited health literacy or difficulties verbalizing their needs.
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