Participatory Design in Health Research: A Way to Change Clinical Practice (Preprint)

BACKGROUND Participatory Design (PD) is a methodology that focuses on user participation in the design of new technologies to leverage organizational changes. PD emerged within the computer field in the 1970s and 1980s when new programs and technologies were developed to empower workers by involving them in matters that concerned them. The concept of ‘users’ emerged during the design and development of personal computers. Consequently, users became central and key decision-makers in the generation of new technology. PD in health research has been proven to change clinical practice. Genuine user involvement that includes all stakeholders, and robust collaborations across sciences, sectors, and disciplines are basic elements of successful research to change clinical practice and to implement novel technical and organizational approaches. OBJECTIVE The aim of this paper is to share knowledge, experiences, and reflections regarding the results and impact of 7 studies completed by our group by: • Describing how PD can be applied in health science. • Illustrating how PD facilitates organizational changes, new perspectives and new communication methods. • Explaining the relevance and suitability of PD as a research design in health science. • Providing recommendations for conducting PD studies in health research. METHODS We reviewed 7 PD-based health science research studies which our group completed over a 19-year span. The paper presents examples from the 3 phases of PD and finally offers recommendations for future PD researchers. RESULTS This paper presents examples from 7 PD studies and finally offers recommendations for future PD researchers. All of the described studies promoted organizational changes supported by health technology and have been implemented at either international, national, regional, or local levels. In all the studies the researcher supported and facilitated creative processes in which users were heard and could participate when aiming to change clinical practice supported by new health technologies or novel applications of extant technology developed in close collaboration. An important component of all the PD studies was the field study as an ideal method to observe needs and interventions in real-life settings. CONCLUSIONS The use of PD in clinical health research facilitates new ways of offering patient pathways supported by tailored technology. In PD mutual learning and co-creation is facilitated. Thus, learning from users, rather than studying them, corroborates extant information and reveals new knowledge.