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.

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.

[Pillars and lines of action for integrated and people- and community-centered health systemsPilares e linhas de ação para sistemas integrados de saúde centrados nas pessoas e nas comunidades]. / Pilares y líneas de acción para los sistemas de salud integrados y centrados en las personas y las comunidades.

This paper presents the position of the Latin American working group of the International Foundation for Integrated Care (IFIC). The working group brings together various Latin American actors and organizations in support of actions that facilitate the transformation of health systems in the region towards integrated systems that focus on people not as isolated individuals but as subjects of law in the complex social and environmental contexts where they live and interact. The working group proposes nine pillars of integrated care to be used as a conceptual framework for policy development and changes in practices: 1) shared vision and values; 2) population health; 3) people and communities as partners; 4) resilient communities; 5) capacities of human resources for health; 6) governance and leadership; 7) digital solutions; 8) aligned payment systems; and 9) public transparency. Based on these pillars, lines of work are proposed to strengthen alliances and networks, advocacy, research, and capacity-building, in order to help develop health and social systems that are effectively integrated and focused not only on people but also on communities in Latin America.

Este artigo apresenta o posicionamento do grupo de trabalho latino-americano da Fundação Internacional de Cuidados Integrados (1) (IFIC, na sigla em inglês). A IFIC reúne diversos atores e organizações da América Latina com o fim de apoiar ações que facilitem a transformação dos sistemas de saúde na região para sistemas integrados e centrados nas pessoas, não como indivíduos isolados, mas como sujeitos de direito, nos complexos contextos sociais e ambientais em que vivem e participam. O grupo de trabalho propõe nove pilares de atenção integrada a serem utilizados como marco conceitual na elaboração de políticas e de mudanças nas práticas: 1) visão e valores compartilhados, 2) saúde das populações, 3) pessoas e comunidades como parceiros, 4) comunidades resilientes, 5) capacitação de talento humano em saúde, 6) governança e liderança, 7) soluções digitais, 8) sistemas de pagamento alinhados e 9) transparência perante a população. Com base nesses pilares, são propostas linhas de trabalho nas áreas de fortalecimento de alianças e redes, incidência política, pesquisa e capacitação, que contribuam para materializar na América Latina sistemas sociais e de saúde efetivamente integrados e centrados não só nas pessoas, como também nas comunidades.

Pilares y líneas de acción para los sistemas de salud integrados y centrados en las personas y las comunidades

[RESUMEN]. Se presenta el posicionamiento del grupo de trabajo latinoamericano de la Fundación Internacional para los Cuidados Integrados (1) (IFIC, por su sigla en inglés). Este reúne a diversos actores y organizaciones de América Latina, con el objeto de apoyar acciones que faciliten la transformación de los sistemas de salud en la Región hacia sistemas integrados y centrados en las personas, no como individuos aislados, sino como sujetos de derecho, en los contextos sociales y ambientales complejos donde viven y se vinculan. El grupo de trabajo plantea nueve pilares de la atención integrada para ser utilizados como marco conceptual en la elaboración de políticas y de cambios en las prácticas: 1) visión y valores compartidos, 2) salud de las poblaciones, 3) las personas y las comunidades como socias, 4) comunidades resilientes, 5) capacidades del talento humano en salud, 6) gobernanza y liderazgo, 7) soluciones digitales, 8) sistemas de pago alineados, y 9) transparencia ante la ciudadanía. Desde estos pilares se proponen líneas de trabajo en los ámbitos del fortalecimiento de alianzas y redes, la abogacía, la investigación y generación de capacidades, que contribuyan a materializar sistemas de salud y sociales efectivamente integrados y centrados no solo en las personas, sino también en las comunidades en América Latina.

[ABSTRACT]. This paper presents the position of the Latin American working group of the International Foundation for Integrated Care (IFIC). The working group brings together various Latin American actors and organizations in support of actions that facilitate the transformation of health systems in the region towards integrated systems that focus on people not as isolated individuals but as subjects of law in the complex social and environmental contexts where they live and interact. The working group proposes nine pillars of integrated care to be used as a conceptual framework for policy development and changes in practices: 1) shared vision and values; 2) population health; 3) people and communities as partners; 4) resilient communities; 5) capacities of human resources for health; 6) governance and leadership; 7) digital solutions; 8) aligned payment systems; and 9) public transparency. Based on these pillars, lines of work are proposed to strengthen alliances and networks, advocacy, research, and capacity-building, in order to help develop health and social systems that are effectively integrated and focused not only on people but also on communities in Latin America.

[RESUMO]. Este artigo apresenta o posicionamento do grupo de trabalho latino-americano da Fundação Internacional de Cuidados Integrados (1) (IFIC, na sigla em inglês). A IFIC reúne diversos atores e organizações da América Latina com o fim de apoiar ações que facilitem a transformação dos sistemas de saúde na região para sistemas integrados e centrados nas pessoas, não como indivíduos isolados, mas como sujeitos de direito, nos complexos contextos sociais e ambientais em que vivem e participam. O grupo de trabalho propõe nove pilares de atenção integrada a serem utilizados como marco conceitual na elaboração de políticas e de mudanças nas práticas: 1) visão e valores compartilhados, 2) saúde das populações, 3) pessoas e comunidades como parceiros, 4) comunidades resilientes, 5) capacitação de talento humano em saúde, 6) governança e liderança, 7) soluções digitais, 8) sistemas de pagamento alinhados e 9) transparência perante a população. Com base nesses pilares, são propostas linhas de trabalho nas áreas de fortalecimento de alianças e redes, incidência política, pesquisa e capacitação, que contribuam para materializar na América Latina sistemas sociais e de saúde efetivamente integrados e centrados não só nas pessoas, como também nas comunidades.

Pilares y líneas de acción para los sistemas de salud integrados y centrados en las personas y las comunidades / Pillars and lines of action for integrated and people- and community-centered health systems / Pilares e linhas de ação para sistemas integrados de saúde centrados nas pessoas e nas comunidades

RESUMEN Se presenta el posicionamiento del grupo de trabajo latinoamericano de la Fundación Internacional para los Cuidados Integrados (1) (IFIC, por su sigla en inglés). Este reúne a diversos actores y organizaciones de América Latina, con el objeto de apoyar acciones que faciliten la transformación de los sistemas de salud en la Región hacia sistemas integrados y centrados en las personas, no como individuos aislados, sino como sujetos de derecho, en los contextos sociales y ambientales complejos donde viven y se vinculan. El grupo de trabajo plantea nueve pilares de la atención integrada para ser utilizados como marco conceptual en la elaboración de políticas y de cambios en las prácticas: 1) visión y valores compartidos, 2) salud de las poblaciones, 3) las personas y las comunidades como socias, 4) comunidades resilientes, 5) capacidades del talento humano en salud, 6) gobernanza y liderazgo, 7) soluciones digitales, 8) sistemas de pago alineados, y 9) transparencia ante la ciudadanía. Desde estos pilares se proponen líneas de trabajo en los ámbitos del fortalecimiento de alianzas y redes, la abogacía, la investigación y generación de capacidades, que contribuyan a materializar sistemas de salud y sociales efectivamente integrados y centrados no solo en las personas, sino también en las comunidades en América Latina.

ABSTRACT This paper presents the position of the Latin American working group of the International Foundation for Integrated Care (IFIC). The working group brings together various Latin American actors and organizations in support of actions that facilitate the transformation of health systems in the region towards integrated systems that focus on people not as isolated individuals but as subjects of law in the complex social and environmental contexts where they live and interact. The working group proposes nine pillars of integrated care to be used as a conceptual framework for policy development and changes in practices: 1) shared vision and values; 2) population health; 3) people and communities as partners; 4) resilient communities; 5) capacities of human resources for health; 6) governance and leadership; 7) digital solutions; 8) aligned payment systems; and 9) public transparency. Based on these pillars, lines of work are proposed to strengthen alliances and networks, advocacy, research, and capacity-building, in order to help develop health and social systems that are effectively integrated and focused not only on people but also on communities in Latin America.

RESUMO Este artigo apresenta o posicionamento do grupo de trabalho latino-americano da Fundação Internacional de Cuidados Integrados (1) (IFIC, na sigla em inglês). A IFIC reúne diversos atores e organizações da América Latina com o fim de apoiar ações que facilitem a transformação dos sistemas de saúde na região para sistemas integrados e centrados nas pessoas, não como indivíduos isolados, mas como sujeitos de direito, nos complexos contextos sociais e ambientais em que vivem e participam. O grupo de trabalho propõe nove pilares de atenção integrada a serem utilizados como marco conceitual na elaboração de políticas e de mudanças nas práticas: 1) visão e valores compartilhados, 2) saúde das populações, 3) pessoas e comunidades como parceiros, 4) comunidades resilientes, 5) capacitação de talento humano em saúde, 6) governança e liderança, 7) soluções digitais, 8) sistemas de pagamento alinhados e 9) transparência perante a população. Com base nesses pilares, são propostas linhas de trabalho nas áreas de fortalecimento de alianças e redes, incidência política, pesquisa e capacitação, que contribuam para materializar na América Latina sistemas sociais e de saúde efetivamente integrados e centrados não só nas pessoas, como também nas comunidades.

Efforts to mitigate the economic impact of the COVID-19 pandemic: potential entry points for neglected tropical diseases.

BACKGROUND: The damage inflicted by the coronavirus diseases 2019 (COVID-19) pandemic upon humanity is and will continue to be considerable. Unprecedented progress made in global health over the past 20 years has reverted and economic growth has already evaporated, giving rise to a global recession, the likes of which we may not have experienced since the Second World War. Our aim is to draw the attention of the neglected tropical disease (NTD) community towards some of the major emerging economic opportunities which are quickly appearing on the horizon as a result of COVID-19. MAIN TEXT: This scoping review relied on a literature search comprised of a sample of articles, statements, and press releases on initiatives aimed at mitigating the impact of COVID-19, while supporting economic recovery. Of note, the donor scenario and economic development agendas are highly dynamic and expected to change rapidly as the COVID-19 pandemic unfolds, as are donor and lender priorities. CONCLUSIONS: The NTD community, particularly in low- and middle-income countries (LMICs), will need to work quickly, diligently, and in close collaboration with decision-makers and key stakeholders, across sectors at national and international level to secure its position. Doing so might enhance the odds of grasping potential opportunities to access some of the massive resources that are now available in the form of contributions from corporate foundations, trust funds, loans, debt relieve schemes, and other financial mechanisms, as part of the ongoing and future economic development agendas and public health priorities driven by the COVID-19 pandemic. This paper should serve as a starting point for the NTD community to seek much needed financial support in order to sustain and revitalize control and elimination efforts pertaining to NTDs in LMICs.

Cost and effects of integrated care: a systematic literature review and meta-analysis.

BACKGROUND: Health and care services are becoming increasingly strained and healthcare authorities worldwide are investing in integrated care in the hope of delivering higher-quality services while containing costs. The cost-effectiveness of integrated care, however, remains unclear. This systematic review and meta-analysis aims to appraise current economic evaluations of integrated care and assesses the impact on outcomes and costs. METHODS: CINAHL, DARE, EMBASE, Medline/PubMed, NHS EED, OECD Library, Scopus, Web of Science, and WHOLIS databases from inception to 31 December 2019 were searched to identify studies assessing the cost-effectiveness of integrated care. Study quality was assessed using an adapted CHEERS checklist and used as weight in a random-effects meta-analysis to estimate mean cost and mean outcomes of integrated care. RESULTS: Selected studies achieved a relatively low average quality score of 65.0% (± 18.7%). Overall meta-analyses from 34 studies showed a significant decrease in costs (0.94; CI 0.90-0.99) and a statistically significant improvement in outcomes (1.06; CI 1.05-1.08) associated with integrated care compared to the control. There is substantial heterogeneity in both costs and outcomes across subgroups. Results were significant in studies lasting over 12 months (12 studies), with both a decrease in cost (0.87; CI 0.80-0.94) and improvement in outcomes (1.15; 95% CI 1.11-1.18) for integrated care interventions; whereas, these associations were not significant in studies with follow-up less than a year. CONCLUSION: Our findings suggest that integrated care is likely to reduce cost and improve outcome. However, existing evidence varies largely and is of moderate quality. Future economic evaluation should target methodological issues to aid policy decisions with more robust evidence on the cost-effectiveness of integrated care.

Methodological Quality of Economic Evaluations in Integrated Care: Evidence from a Systematic Review.

INTRODUCTION: The aim of this review is to systematically assess the methodological quality of economic evaluations in integrated care and to identify challenges with conducting such studies. THEORY AND METHODS: Searches of grey-literature and scientific papers were performed, from January 2000 to December 2018. A checklist was developed to assess the quality of economic evaluations. Authors' statements of challenges encountered during their evaluations were qualitatively coded. RESULTS: Forty-four articles were eligible for inclusion. The review found that study design, measurement of cost and outcomes, statistical analysis and presentation of data were the areas with most quality variation. Authors identified challenges mostly related to time horizon of the evaluation, inadequate or lack of comparator group, contamination bias, and a post-hoc evaluation culture. DISCUSSION: Our review found significant differences in quality, with some studies showing poor methodological rigor; challenging conclusions on the cost-effectiveness of integrated care. CONCLUSION: It is essential for evaluators to use best-practice standards when planning and conducting economic evaluations, in order to build a reliable evidence base for decision-making in integrated care.

Rectal cancer: future directions and priorities for treatment, research and policy in New Zealand.

New Zealand has one of the highest incidences of rectal cancer in the world, and its optimal management requires a multidisciplinary approach. A National Rectal Cancer Summit was convened in August 2013 to discuss management of rectal cancer in the New Zealand context, to highlight controversies and discuss domestic priorities for the future. This paper summarises the priorities for treatment, research and policy for rectal cancer services in New Zealand identified as part of the Summit in August. The following priorities were identified: - Access to high-quality information for service planning, review of outcomes, identification of inequities and gaps in provision, and quality improvement; - Engagement with the entire sector, including private providers; - Focus on equity; - Emerging technologies; - Harmonisation of best practice; - Importance of multidisciplinary team meetings. In conclusion, improvements in outcomes for patients with rectal cancer in New Zealand will require significant engagement between policy makers, providers, researchers, and patients in order to ensure equitable access to high quality treatment, and strategic incorporation of emerging technologies into clinical practice. A robust clinical information framework is required in order to facilitate monitoring of quality improvements and to ensure that equitable care is delivered.

Providing care for women with gynaecological malignancy: the need for a coordinated national approach.

Gynaecological cancer services in New Zealand have followed an evolutionary process rather than being centrally organised according to evidence on best practice. A report was recently commissioned by the Ministry of Health to review gynaecological cancer services and to provide guidance on the most efficient and effective way to delivery high quality, equitable care for women diagnosed with gynaecological cancers. It is apparent the sustainability of current services is compromised by disparities in access to evidence-based multidisciplinary care, significant workforce shortages and a lack of standardised formal referral protocols. Key recommendations of the report include the establishment of an overarching national gynaecological cancer steering group and ultimately a four centre hub and spoke model of care provision.

Results of a telehealth-enabled chronic care management service to support people with long-term conditions at home.

Both congestive heart failure and chronic obstructive pulmonary disease are more common among Maori than non-Maori people, and the cultural acceptability of home-based remote monitoring technology has not been tested. We conducted a 12-month pilot trial of home telemonitoring. Patients were randomly assigned to the control and intervention groups. Patients in the control group showed no clear differences in quality of life at the end of the trial. The telehealth group showed a consistent trend towards improved quality of life on several instruments, including the SF-36, the St George Respiratory Questionnaire and the K10 questionnaire; the improvement in the latter was significant. Hospitalizations were reduced in both the control (-19%) and telehealth group (-25%). Patient interviews indicated that the technology was acceptable to most patients and their families, including the Maori. The results from the pilot trial suggest that wider implementation with a cost benefit evaluation could be worthwhile.