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

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).

Dementia and the risk of short-term readmission and mortality after a pneumonia admission.

BACKGROUND: At time of discharge after a pneumonia admission, care planning for older persons with dementia is essential. However, care planning is limited by lack of knowledge on the short-term prognosis. AIM: To investigate 30-day mortality and readmission after hospital discharge for pneumonia in persons with versus without dementia, and to investigate how these associations vary with age, time since discharge, and medication use. METHODS: Using the Danish registries, we investigated 30-day mortality and readmission in persons (+65 years) discharged after pneumonia in 2000-2016 (N = 298,872). Adjusted mortality rate ratios (aMRRs) and incidence rate ratios (aIRRs) were calculated for persons with versus without dementia, and we investigated if these associations varied with use of benzodiazepines, opioids, and antipsychotics, and with age and time since discharge. RESULTS: Among 25,948 persons with dementia, 4,524 died and 5,694 were readmitted within 30 days. The risk of 30-day mortality was 129% higher (95% CI 2.21-2.37) in persons with versus without dementia after adjustment for sociodemographic characteristics, admission-related factors, and comorbidities. Further, the highest mortality risk was found in persons with both dementia and use of antipsychotics (aMRR: 3.39, 95% CI 3.19-3.59); 16% of deaths in this group could not be explained by the independent effect of each exposure. In those with dementia, the highest aMRRs were found for the youngest and for the first days after discharge. The risk of 30-day readmission was 7% higher (95% CI 1.04-1.10) in persons with versus without dementia. In those with dementia, the highest aIRRs were found for the first days after discharge. CONCLUSIONS: Dementia was associated with higher short-term mortality after pneumonia, especially in users of antipsychotics, and with slightly higher readmission, especially in the first days after discharge. This is essential knowledge in the care planning for persons with dementia who are discharged after a pneumonia admission.

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

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.