The Participatory Zeitgeist in Health Care: It is Time for a Science of Participation

Abstract

Participation in health care is currently the zeitgeist/spirit of our times. A myriad of practices characterizes this “participatory Zeitgeist” in contemporary health care, which range from patients and professionals collaborating as partners in service delivery and treatment decision-making, to crowdsourced cures and participation in online communities, to using health apps, to involvement in health care quality improvement initiatives for systems redesign using coproduction and co-design methods. To date, patient engagement and participation in online communities and the use of apps have received a good deal of attention in participatory medicine. However, there has been a less critical examination of participation in health care planning, design, delivery, and improvement. In the face of what Thomas Kuhn called a scientific revolution, we are presented with the opportunity to re-examine some of the assumptions underpinning participation in health care and some of the emerging anomalies and weaknesses in the current science. This re-examination will allow the development of a new paradigm, a science of participation. In this science, we can systematically test, refine, and advance participation in health care to build a unifying language and theories from across the interdisciplinary fields of participatory design, medicine, and research to develop and test models to explain impacts and outcomes. A science of participation will allow the emergent and unexplained facts to be addressed in the current participatory mood of health care planning, design, delivery, and improvement.

The manifestation of participation within a co‐design process involving patients, significant others and health‐care professionals

“…22 Further, in processes involving patients with limited cognitive and communicative skills, 4 such as after a stroke, it may be even more challenging to achieve equal power relationships. Calls have been made to critically explore participation in health-care design 23 and how 'reconfigurations of power relations' can be achieved within co-design processes. 24 Consequently, research with a specific focus on user participation in the co-design process and the enablers and barriers to user participation is needed.…”

Application of action research in the field of healthcare: a scoping review protocol

“…These four factors will be used for the scoping review. A scoping review is the most appropriate approach to the literature as it provides an overview of studies, clarifying concepts or contextual information (Pollack et al, 2021) and it can be used to investigate research conduct (Munn et al, 2018;Tricco et al, 2018). This aim of this scoping review is to explore whether action research studies demonstrate explicitly how the essential factors of a comprehensive framework of action research are upheld.…”

Patients and public are important stakeholders in health technology assessment but the level of involvement is low – a call to action

“…And integrating objective evidence with the findings from the lived experience as provided by patients and their carers remains a challenge, but can still contribute to the relevance of HTA recommendations [ 9 ]. The experiences of patients and carers together with the accumulated knowledge of healthcare professionals can provide valid sources of evidence if empowered to do so [ 42 ]. ‘Patient leadership’ could help systems understand how to invest in active, meaningful patient engagement and involvement.…”

“…This commentary illustrates how the language used in HTA can be challenging. Palmer [ 42 ] argues that unifying language is needed where patients are to work as partners, and is part of a movement for a ‘science of participation’. Gathering and sharing of experiences to gain greater understanding of the issues, and an evidence base of impact and outcomes can be built through co-production.…”