The Participatory Zeitgeist: an explanatory theoretical model of change in an era of coproduction and codesign in healthcare improvement

Abstract

Healthcare systems redesign and service improvement approaches are adopting participatory tools, techniques and mindsets. Participatory methods increasingly used in healthcare improvement coalesce around the concept of coproduction, and related practices of cocreation, codesign and coinnovation. These participatory methods have become the new Zeitgeist-the spirit of our times in quality improvement. The rationale for this new spirit of participation relates to voice and engagement (those with lived experience should be engaged in processes of development, redesign and improvements), empowerment (engagement in codesign and coproduction has positive individual and societal benefits) and advancement (quality of life and other health outcomes and experiences of services for everyone involved should improve as a result). This paper introduces Mental Health Experience Co-design (MH ECO), a peer designed and led adapted form of Experience-based Co-design (EBCD) developed in Australia. MH ECO is said to facilitate empowerment, foster trust, develop autonomy, self-determination and choice for people living with mental illnesses and their carers, including staff at mental health services. Little information exists about the underlying mechanisms of change; the entities, processes and structures that underpin MH ECO and similar EBCD studies. To address this, we identified eight possible mechanisms from an assessment of the activities and outcomes of MH ECO and a review of existing published evaluations. The eight mechanisms, recognition, dialogue, cooperation, accountability, mobilisation, enactment, creativity and attainment, are discussed within an 'explanatory theoretical model of change' that details these and ideal relational transitions that might be observed or not with MH ECO or other EBCD studies. We critically appraise the sociocultural and political movement in coproduction and draw on interdisciplinary theories from the humanities-narrative theory, dialogical ethics, cooperative and empowerment theory. The model advances theoretical thinking in coproduction beyond motivations and towards identifying underlying processes and entities that might impact on process and outcome. Trial registration number The Australian and New Zealand Clinical Trials Registry, ACTRN12614000457640 (results). The new ZeiTgeisT: pArTiCipATionThe current preoccupation with methods for citizen engagement, public participation and involvement of people with lived experience in health system redesign and service improvement might be said to represent the new Zeitgeist-the spirit of our times.

How might patient involvement in healthcare quality improvement efforts work—A realist literature review

“…This realist synthesis suggests a program theory to guide health‐care organizations when involving patients in improving health‐care quality; tailor patient involvement to various QI efforts and contexts, support interaction and partnership within each QI effort, and support behavioural changes that follow QI efforts involving patients—at all organizational levels. These findings may seem self‐evident; however, the gap between health‐care policy and practice remains, with barriers and uncertainty concerning how to best involve patients on different organizational levels . Patient involvement includes many aspects and issues, and the term is not clearly understood, by either patients or healthcare professionals .…”

“…Thoughtful and proper evaluation and feedback is needed—for example by developing and monitoring patient‐centred outcomes and evaluating health‐care professionals’ motivation and well‐being. It is an on‐going pursuit of organizational behaviour change in the era of co‐production and co‐design . Further research in this area is warranted …”

“…In health‐care QI efforts, resources, reasoning and the local context all matter. The shift towards co‐production and co‐design further emphasizes the importance of this. Therefore, health‐care organizations benefit from realist approaches to generating knowledge about how patient involvement might work, how, for whom, to what extent and under what conditions.…”

“…Increasingly, health‐care professionals are expected to involve patients at different levels of health care, and health‐care organizations and their leaders are expected to support such efforts . Societal focus on health‐care quality, patient safety and patients’ health‐care experiences, and growing rejection of paternalism further drives efforts to involve patients—the era of co‐production and co‐design . In the literature, patient involvement has been described by many terms with diverse definitions—patient‐ or person‐centred care, patient or user participation and engagement, co‐creation, co‐design, co‐production, etc Yet, there is no universally agreed‐upon definition of the different patient involvement concepts or what aspects should be fulfilled for each concept.…”

“…Therefore, to improve and sustain quality in a health‐care system, key leverage points exist at the clinical microsystem level . Considering the growing interest in active patient involvement in QI, where the patients hold the role as co‐creators, the uncertainty over how best to orchestrate such involvement, and what outcomes to expect on micro‐, meso‐, and macrosystem levels, it is important to understand how approaches to patient involvement might work. The realist literature review approach aims to determine what works for whom, in what circumstances, in what respects and why …”