Just a story? Leadership, lived experience and integrated care.

BACKGROUND: Integrated care is based around values of involvement and shared decision-making, but these are not often reflected within planning and implementation. Barriers include continued emphasis on professional and managerial perspectives, skills gaps on how best to engage people and communities and insufficient investment in involvement infrastructure. Despite such challenges, people with lived experience have still led changes in policy and services. DESIGN: Qualitative study involving 25 participants with lived experience from 12 countries. Participants shared their background stories and engaged in semistructured interviews relating to leadership identity, experience of influencing and personal learning. Transcripts were analysed through a framework approach informed by narrative principles. RESULTS: Participants were motivated by their own experiences and a wish to improve care for future individuals and communities. Sharing their story was often the entry point for such influencing. Participants gained skills and confidence in story telling despite a lack of support and development. Many felt comfortable being described as a leader while others rejected this identity and preferred a different title. No common alternative term to leader was identified. Influencing services required considerable personal cost but also led to new networks, skills development and satisfaction when change was achieved. DISCUSSION: Leadership within integrated care is often awarded to those with structural power related to management or clinical seniority. People with lived experience are though uniquely placed to identify what needs to change and can develop inspiring visions based around their personal stories. Claiming identity as leader can be challenging due to traditional notions of who is eligible to lead and unwillingness by professionals and managers to grant such identity. CONCLUSIONS: People with lived experience should be recognised as leaders of integrated care and have access to developmental opportunities and practical support to strengthen their skills, including that of storytelling. PATIENT AND PUBLIC CONTRIBUTION: The research was instigated on the request of a community advisory board of people with lived experience who shaped its design, contributed to the analysis and informed the conclusions and implications.

Defining the characteristics of intermediate care models including transitional care: an international Delphi study.

BACKGROUND: Although there is growing utilisation of intermediate care to improve the health and well-being of older adults with complex care needs, there is no international agreement on how it is defined, limiting comparability between studies and reducing the ability to scale effective interventions. AIM: To identify and define the characteristics of intermediate care models. METHODS: A scoping review, a modified two-round electronic Delphi study involving 27 multi-professional experts from 13 countries, and a virtual consensus meeting were conducted. RESULTS: Sixty-six records were included in the scoping review, which identified four main themes: transitions, components, benefits and interchangeability. These formed the basis of the first round of the Delphi survey. After Round 2, 16 statements were agreed, refined and collapsed further. Consensus was established for 10 statements addressing the definitions, purpose, target populations, approach to care and organisation of intermediate care models. DISCUSSION: There was agreement that intermediate care represents time-limited services which ensure continuity and quality of care, promote recovery, restore independence and confidence at the interface between home and acute services, with transitional care representing a subset of intermediate care. Models are best delivered by an interdisciplinary team within an integrated health and social care system where a single contact point optimises service access, communication and coordination. CONCLUSIONS: This study identified key defining features of intermediate care to improve understanding and to support comparisons between models and studies evaluating them. More research is required to develop operational definitions for use in different healthcare systems.

Participatory Action Research as a Driver for Health Promotion and Prevention: A Co-creation Process Between Professionals and Citizens in a Deprived Neighbourhood in the Hague.

Introduction: Ignited by the persistent health inequalities many cities and neighbourhoods, the 'Healthy and Happy The Hague' network in the Netherlands wanted to gain insight in how prevention and health promotion could become successful in one deprived neighbourhood, Moerwijk. Methods: The cycle of Look-Think-Act of Participatory Action Research was used in which both citizens and professionals got involved from the start. Besides interviews, field notes were analysed, visualised and discussed in several rounds of focus groups. Results: Thematic analysis yielded seven themes: Healthy Eating and Exercise, Healthy Money, Healthy Mind, Healthy Relationships, Growing up healthy, Healthy Environment and Healthy Collaboration. During sessions around combination of themes, eight initiatives were co-created by citizens and professionals together, improving the feeling of ownership and interconnectedness. Discussion and conclusion: This PAR sheds a light on the mismatch between the system world's solutions for individuals and the living world's needs for solutions for the collective. Findings provides a better insight into the social, political, and cultural mechanisms and processes that influence clustering and interaction of health conditions. PAR is a promising process of citizens and professionals working together is an excellent way to learn about the conditions under which people experience health inequalities, and how to combat these inequalities.

Builder, Expert, Disruptor, Leader: The Many Roles of People with Lived Experience.

People with lived experience of health and social care, including family carers, should be at the heart of integrated care policy and practice. One of the challenges to achieving such co-production is insufficient clarity and limited understanding of the different roles that people with lived experience are asked or choose to undertake. Following research and workshops, four roles have been identified - community builder, improvement expert, disruptor/advocate, and citizen leader. Recognising the distinct contribution and demands of these roles will enable appropriate support and development for people with lived experience and the professionals and managers with whom they collaborate.

Exploring the Quality Paradigms in Integrated Care: The Need for Emergence and Reflection.

INTRODUCTION AND AIM: There are four quality paradigms, of which the Empirical and Reference paradigm fit best in stable circumstances, and the Reflective and Emergence paradigms, which fit best in unstable circumstances. This study aims to explore the use of the four quality paradigms in integrated care, and to shed light on the different paradigmatic commitments and different perspectives on quality. METHODS: Peer-reviewed articles from the International Journal of Integrated care published between January 2015 and December 2019 were included in this study. For each article was determined in which paradigm it belonged. Additionally, the role of the patient and domain of impact in research, policy or practice in relationship to the paradigms were investigated. RESULTS: In total, 255 articles were assessed based on the four quality paradigms. 55 (21.6%) of the articles were placed in the Empirical paradigm, 147 (57.6%) in the Reference paradigm and 45 (17.6%) in the Reflective paradigm. The Emergence paradigm occurred the least (n = 8, 3.1%). DISCUSSION AND CONCLUSION: Of all reviewed studies, 80% were placed in the Empirical and Reference paradigm. This raises the question if the used research approaches are consistent with the complexity and contexts in the field of integrated care and support a personalised care approach. More awareness of all four paradigms and reflection on the used epistemologies is needed.

Research in Integrated Care: The Need for More Emergent, People-Centred Approaches.

The International Foundation for Integrated Care (IFIC) recently celebrated its 20th International Conference (ICIC20) through a virtual event that brought together patients and carers, academics, care professionals, NGOs, policy-makers and industry partners from across the global integrated care community [1]. The International Journal for Integrated Care (IJIC) used this opportunity to host a workshop on published research in integrated care, specifically to reflect on the quality of existing scientific enquiry. A lively discussion on the current state of integrated care research concluded that there remained significant shortcomings to current methodologies - for example, in their ability to provide the depth of understanding required to support the knowledge needed to best inform policy and practice, particularly when addressing people-centredness. In part, the debate recognized how the nature of existing research funding, and prevailing attitudes and preferences towards certain research methodologies, were partly to blame (as has been noted by IJIC previously [23]). The workshop debated how research and researchers must change their focus in order to better contribute to the tenet of people-centred integrated care.

Integrated healthcare for chronically ill. Reflections on the gap between science and practice and how to bridge the gap.

Integrated care offers an opportunity to address healthcare efficiency and effectiveness concerns and is especially relevant for elderly patients with different chronic illnesses. In current care standards for chronic care focus is often on one disease. The chronic care model (CCM) is used as the basis of integrated care programs. It identifies essential components that encourage high-quality chronic disease care, involving the community and health system and including self-management support, delivery system design, decision support, and clinical information systems. Improvements in those interrelated components can produce system reform in which informed, activated patients interact with prepared, proactive practice teams. There is however a lack of research evidence for the impact of the chronic care model as a full model. Integrated care programs have widely varying definitions and components and failure to recognize these variations leads to inappropriate conclusions about the effectiveness of these programs and to inappropriate application of research results. It seems important to carefully consider the type and amount of data that are collected within the disease management programs for several purposes, as well as the methods of data collection. Understanding and changing the behavior of complex dynamic chronic care system requires an appreciation of its key patterns, leverage points and constraints. A different theoretical framework, that embraces complexity, is required. Research should be design-based, context bound and address relationships among agents in order to provide solutions that address locally defined demands and circumstances.