11.D Reimagining Long-Term Care in Europe: Policy Frameworks, Nursing Home Medical Models and Community-Rooted Alternatives
| Tuesday, April 14, 2026 |
| 16:45 - 18:00 |
| Hall 5 |
Overview
Integrated Long-Term Care SIG and Ageing and Frailty SIG
This session reimagines long-term care through the lens of integrated, person-centred, and community-rooted approaches. Drawing on research and practice from across Europe, Canada, and Brazil, it examines policy frameworks, nursing home medical models, social dementia approaches, and transitions away from institutional care. Delegates will learn how health and social care can be better organised and funded to support dignity, wellbeing, and clinical appropriateness for people living in long-term care settings. The session offers insights into aligning policy, practice, and lived experience to create more humane, sustainable models of long-term care.
Speaker
Miss Pauline Sarah Münchenberg
Research Associate
Charité – Universitätsmedizin Berlin
Provision of health services to nursing home residents across selected European countries – policy options for Europe.
Abstract
Background: Many European countries have recognised the challenge of providing high-quality long-term care (LTC). We explored how selected European countries organise and fund primary and specialist healthcare services for nursing home residents requiring 24-hour nursing and social care in view of understanding which approaches might offer better outcomes.
Approach: A rapid literature search of the databases MEDLINE, Embase Ovid, Google Scholar and Google was performed, complemented by inputs from national experts and practitioners. The following European countries were included, representing a variety of health systems and models of care provision in nursing homes: England (UK), Germany, the Netherlands, Norway, Poland, Spain and Sweden.
Results: The organisation, financing and provision of LTC, as well as of primary and specialised care for nursing home residents, varies substantially between and within European countries, even among those with similar social, cultural, health and funding systems. In most included countries, LTC services are covered and financed similarly to health services, but co-payments often play a substantially larger role in LTC than in healthcare spending. Nursing staff or care assistants provide 24-hour nursing care, while GPs tend to be responsible for providing medical care. However, most GPs working in nursing homes are self-employed and community-based rather than employed by the facility. Nursing homes in all of the selected countries engage allied health professionals, such as physiotherapists, occupational therapists and speech and language therapists. These professionals usually work in private practices and provide nursing home services either on-site or at their own practice. Whether health professionals are directly employed by the nursing home or work on a freelance basis depends on various factors; however, direct employment is rare. Similarly, specialists are often brought in as consultants, rather than being part of the nursing home’s permanent staff, as they typically work in private practices and may offer nursing home visits. The Netherlands is the only country in our sample where it is common practice for nursing homes to employ specially trained elderly care physicians (ECPs), although some nursing homes in Norway follow the same model. There is some evidence that the ECP model can help to reduce the demand for specialised services, avoid unnecessary hospitalisations and lead to higher patient satisfaction with primary care services.
Implications: European countries largely separate health services from LTC, but initial evidence from more integrated models like those in the Netherlands and Norway suggests potential benefits. Decisions on ownership structures and quality assurance, as well as on access to primary care, allied health professionals and specialised care will need to take into account their impact on care integration and facilitating transitions between care settings. Improved coordination between different care providers could reduce avoidable hospitalisations while improving discharge processes. These decisions should be explicit and opened up to public consultation, but have so far been made implicitly and by default.
Approach: A rapid literature search of the databases MEDLINE, Embase Ovid, Google Scholar and Google was performed, complemented by inputs from national experts and practitioners. The following European countries were included, representing a variety of health systems and models of care provision in nursing homes: England (UK), Germany, the Netherlands, Norway, Poland, Spain and Sweden.
Results: The organisation, financing and provision of LTC, as well as of primary and specialised care for nursing home residents, varies substantially between and within European countries, even among those with similar social, cultural, health and funding systems. In most included countries, LTC services are covered and financed similarly to health services, but co-payments often play a substantially larger role in LTC than in healthcare spending. Nursing staff or care assistants provide 24-hour nursing care, while GPs tend to be responsible for providing medical care. However, most GPs working in nursing homes are self-employed and community-based rather than employed by the facility. Nursing homes in all of the selected countries engage allied health professionals, such as physiotherapists, occupational therapists and speech and language therapists. These professionals usually work in private practices and provide nursing home services either on-site or at their own practice. Whether health professionals are directly employed by the nursing home or work on a freelance basis depends on various factors; however, direct employment is rare. Similarly, specialists are often brought in as consultants, rather than being part of the nursing home’s permanent staff, as they typically work in private practices and may offer nursing home visits. The Netherlands is the only country in our sample where it is common practice for nursing homes to employ specially trained elderly care physicians (ECPs), although some nursing homes in Norway follow the same model. There is some evidence that the ECP model can help to reduce the demand for specialised services, avoid unnecessary hospitalisations and lead to higher patient satisfaction with primary care services.
Implications: European countries largely separate health services from LTC, but initial evidence from more integrated models like those in the Netherlands and Norway suggests potential benefits. Decisions on ownership structures and quality assurance, as well as on access to primary care, allied health professionals and specialised care will need to take into account their impact on care integration and facilitating transitions between care settings. Improved coordination between different care providers could reduce avoidable hospitalisations while improving discharge processes. These decisions should be explicit and opened up to public consultation, but have so far been made implicitly and by default.
Biography
Pauline Sarah Münchenberg holds a BSc in Psychology and a MSc in Clinical Neuroscience. She works a s aresearch associate at the Charité Berlin in Public Health, pursuing her doctoral degree, and as a freelancer for the European Observatory on Health Systems and Policies. Her research focuses on health systems and policies, public health, digital health, and psychiatry.
Prof Isabelle Fabbricotti
Professor of Integrated Care
Erasmus School of Health Policy & Management, Erasmus University Rotterdam Universuty Rotterdam
Social Dementia Approach: effects and scalibility of an integrated community-based innovation
Abstract
Background
The Social Dementia Approach (SDA) is a Dutch innovation in community-based dementia care, integrating social and medical domains to promote wellbeing, independence, and social participation. Rather than focusing on cognitive decline or care dependency, the SDA supports persons with dementia to maintain social roles, meaning, and relationships within their communities. It aims to strengthen social networks, bridge formal care and informal support, and foster community cohesion and inclusion centred around specialized so called SDA-teams. This research evaluated the effects of SDA on persons with dementia, their relatives, workforce capacity, costs, and its implications for sustainable implementation within integrated community-based care systems.
Approach
A comparative, mixed-methods multiple case study was conducted across 6 regions implementing the SDA. Quantitative data from internal monitoring systems, and the Dutch registry of costs of care from CBS and Vektis were combined with qualitative data. Data included interviews with persons with dementia (n=21), relatives (n=20), SDA team members (n=39), health professionals (n=29), policymakers and managers (n=35), and funders (n=24), supplemented by six co-creation sessions and a survey (n=73). Quantitative measures (N=220 participants, N=186 relatives) assessed quality of life, costs, and workforce capacity using a quasi-experimental design with matching (N=183).
Results
Qualitative findings demonstrate that the SDA enhances social quality of life by restoring participants’ sense of belonging and identity. Individuals rediscovered meaningful roles as partners, friends, or community members, counteracting social isolation and loneliness. Trust-based relationships between participants and SDA team members were pivotal, creating emotional safety and self-worth. Quantitative analyses indicated stability in quality of life over time, with significant improvements among participants who initially reported low wellbeing. For relatives, the SDA provided emotional relief, opportunities for respite, and improved relationships with the person with dementia. Quantitatively, caregivers’ quality of life remained stable. Implementation varied across regions. Success factors included dedicated teams, relational continuity, and local collaboration between social care and health services. However, embedding the SDA sustainably proved challenging due to unclear role divisions, fragmented interests between SDA, the social and medical health professionals, and dependence on temporary funding. Costs and workforce analyses did not confirm the anticipated gains. Contrary to expectations, the SDA did not lead to reduced care expenditures or delay in nursing home admission. Receiving SDA support incurred higher extramural care costs and showed similar rates and timing of institutionalization compared to the control group.
Implications
The SDA demonstrates tangible benefits for wellbeing and social inclusion but exposes structural tensions between relational, human-centered approaches and system logics driven by efficiency, standardization, and medicalization. Embedding and scaling such social innovations in integrated social and medical community based care systems require cross-domain governance, and adaptive funding models. The findings also highlight the importance of methodological pluralism in evaluating complex, community-embedded interventions and suggest that system transformation toward integrated, community-based dementia care depends as much on cultural and institutional change as on service innovation itself.
The Social Dementia Approach (SDA) is a Dutch innovation in community-based dementia care, integrating social and medical domains to promote wellbeing, independence, and social participation. Rather than focusing on cognitive decline or care dependency, the SDA supports persons with dementia to maintain social roles, meaning, and relationships within their communities. It aims to strengthen social networks, bridge formal care and informal support, and foster community cohesion and inclusion centred around specialized so called SDA-teams. This research evaluated the effects of SDA on persons with dementia, their relatives, workforce capacity, costs, and its implications for sustainable implementation within integrated community-based care systems.
Approach
A comparative, mixed-methods multiple case study was conducted across 6 regions implementing the SDA. Quantitative data from internal monitoring systems, and the Dutch registry of costs of care from CBS and Vektis were combined with qualitative data. Data included interviews with persons with dementia (n=21), relatives (n=20), SDA team members (n=39), health professionals (n=29), policymakers and managers (n=35), and funders (n=24), supplemented by six co-creation sessions and a survey (n=73). Quantitative measures (N=220 participants, N=186 relatives) assessed quality of life, costs, and workforce capacity using a quasi-experimental design with matching (N=183).
Results
Qualitative findings demonstrate that the SDA enhances social quality of life by restoring participants’ sense of belonging and identity. Individuals rediscovered meaningful roles as partners, friends, or community members, counteracting social isolation and loneliness. Trust-based relationships between participants and SDA team members were pivotal, creating emotional safety and self-worth. Quantitative analyses indicated stability in quality of life over time, with significant improvements among participants who initially reported low wellbeing. For relatives, the SDA provided emotional relief, opportunities for respite, and improved relationships with the person with dementia. Quantitatively, caregivers’ quality of life remained stable. Implementation varied across regions. Success factors included dedicated teams, relational continuity, and local collaboration between social care and health services. However, embedding the SDA sustainably proved challenging due to unclear role divisions, fragmented interests between SDA, the social and medical health professionals, and dependence on temporary funding. Costs and workforce analyses did not confirm the anticipated gains. Contrary to expectations, the SDA did not lead to reduced care expenditures or delay in nursing home admission. Receiving SDA support incurred higher extramural care costs and showed similar rates and timing of institutionalization compared to the control group.
Implications
The SDA demonstrates tangible benefits for wellbeing and social inclusion but exposes structural tensions between relational, human-centered approaches and system logics driven by efficiency, standardization, and medicalization. Embedding and scaling such social innovations in integrated social and medical community based care systems require cross-domain governance, and adaptive funding models. The findings also highlight the importance of methodological pluralism in evaluating complex, community-embedded interventions and suggest that system transformation toward integrated, community-based dementia care depends as much on cultural and institutional change as on service innovation itself.
Biography
Prof. dr. Isabelle Fabbricotti is Professor of Integrated Care at Erasmus University Rotterdam. Fabbricotti has extensive experience in evaluating large-scale, complex, and multidisciplinary interventions. Fabbricotti’s research engages deeply with the evolving relationship between patients, formal and informal caregivers, and the deployment of ICT and eHealth solutions to integrated care. A distinctive dimension of Fabbricotti’s research is her focus on the integration of social and medical care from the perspective of social approaches. Methodologically, Fabbricotti employs qualitative, quantitative, and mixed-methods designs, alongside co-creation approaches and realist evaluation frameworks.
Dr Albert Alonso
Senior Researcher
FRCB-IDIBAPS
Advancing Integrated Long-Term Care in Europe: The Laurel Approach to Evidence-Based Policy through the FLINT Framework and Field Case Studies
Abstract
Background
Europe faces growing demand for long-term care due to population ageing and increased longevity among individuals with chronic conditions and disabilities. Ensuring affordable, high-quality, person-centred, and community-based care, while addressing gender and regional inequalities, remains a common challenge for EU Member States. The EU-funded Project Laurel addresses this challenge by developing actionable policy measures to support effective and innovative integrated long-term care (I-LTC) solutions that promote equity, quality, and sustainability across Europe.
Approach
Drawing on a rapid review, the project developed the European Framework for Long-term Integrated Care Services (FLINT), a policy tool structured around six domains: People and Communities, Workforce and Service Delivery, Organisation of Care, ICT and Systems, Finance, and Governance. Building on this foundation, Laurel launched a European field study to map and assess I-LTC initiatives. Consortium partners identified initiatives that enhance integration between health and social care through coordination mechanisms such as case management, multidisciplinary teams, and shared care planning.
A mixed-methods approach was employed to investigate stakeholder perspectives on I-LTC. A total of 64 surveys were administered to both professional stakeholders (e.g. health and social care practitioners) and non-professional stakeholders (e.g. informal carers and community actors). To enrich the analysis, 15 focus groups were conducted with care recipients, informal carers, and care providers. These groups brought together diverse experiences, facilitating a deeper examination of survey findings and the collaborative identification of priorities for policy and system improvement.
Results
Preliminary analysis indicates shared priorities across groups, particularly the need for strengthened workforce support, clearer governance frameworks, and enhanced access to digital tools. At the same time, notable variations emerged across several of the domains examined, including coordination gaps, digital exclusion, and gender-based differences. These initial findings suggest that participatory, person-centred approaches are effective in identifying actionable priorities and context-sensitive pathways for system improvement.
Implications
By linking evidence with practice, Project Laurel offers policymakers a practical framework for assessing and improving I-LTC systems. Its inclusive, comparative methodology facilitates the identification of context-specific priorities while promoting cross-country learning. In so doing, the project contributes directly to EU objectives for more equitable, gender-sensitive, and sustainable care systems, reinforcing the transition towards person-centred, community-based models of care that leave no one behind.
Europe faces growing demand for long-term care due to population ageing and increased longevity among individuals with chronic conditions and disabilities. Ensuring affordable, high-quality, person-centred, and community-based care, while addressing gender and regional inequalities, remains a common challenge for EU Member States. The EU-funded Project Laurel addresses this challenge by developing actionable policy measures to support effective and innovative integrated long-term care (I-LTC) solutions that promote equity, quality, and sustainability across Europe.
Approach
Drawing on a rapid review, the project developed the European Framework for Long-term Integrated Care Services (FLINT), a policy tool structured around six domains: People and Communities, Workforce and Service Delivery, Organisation of Care, ICT and Systems, Finance, and Governance. Building on this foundation, Laurel launched a European field study to map and assess I-LTC initiatives. Consortium partners identified initiatives that enhance integration between health and social care through coordination mechanisms such as case management, multidisciplinary teams, and shared care planning.
A mixed-methods approach was employed to investigate stakeholder perspectives on I-LTC. A total of 64 surveys were administered to both professional stakeholders (e.g. health and social care practitioners) and non-professional stakeholders (e.g. informal carers and community actors). To enrich the analysis, 15 focus groups were conducted with care recipients, informal carers, and care providers. These groups brought together diverse experiences, facilitating a deeper examination of survey findings and the collaborative identification of priorities for policy and system improvement.
Results
Preliminary analysis indicates shared priorities across groups, particularly the need for strengthened workforce support, clearer governance frameworks, and enhanced access to digital tools. At the same time, notable variations emerged across several of the domains examined, including coordination gaps, digital exclusion, and gender-based differences. These initial findings suggest that participatory, person-centred approaches are effective in identifying actionable priorities and context-sensitive pathways for system improvement.
Implications
By linking evidence with practice, Project Laurel offers policymakers a practical framework for assessing and improving I-LTC systems. Its inclusive, comparative methodology facilitates the identification of context-specific priorities while promoting cross-country learning. In so doing, the project contributes directly to EU objectives for more equitable, gender-sensitive, and sustainable care systems, reinforcing the transition towards person-centred, community-based models of care that leave no one behind.
Biography
Dr Albert Alonso is a Senior Researcher at the Clinic Barcelona Research Foundation (FRCB-IDIBAPS). His work centres on defining, evaluating, and implementing innovative models for health service delivery, with a particular focus on integrated and long-term care. He has led and contributed to numerous R&D initiatives employing information technology to enhance care provision. Dr Alonso, who holds an MD, a PhD in Medicine, and a postgraduate diploma in Information Systems Management and Organisation, is also Senior Associate of the International Foundation for Integrated Care (IFIC). He currently coordinates the EU-funded Laurel project on integrated long-term care across Europe.
Sra. Claudia Simões-Carvalho
Vice Presidente De Assistência Social
Fundação Leão Xiii
Care that Transforms: From Institutionalization to Community Care
Abstract
BACKGROUND:
Over the past 3 years, the Leão XIII Foundation, a state government agency in Rio de Janeiro that develops social protection programs in the state, has been promoting the repoliticization of care through its Long-Term Care Facilities for the Elderly. By reconfiguring its institutional role, the Leão XIII Foundation seeks to transform LTCF from mere spaces of shelter into political and pedagogical spaces of care, recognizing it as a social right and essential work.
APPROACH:
The aging of the Brazilian population poses the challenge of reorganizing care practices, traditionally centered on the family. The increase in longevity, which will raise the number of elderly people from approximately 33 million in 2025 to approximately 68 million in 2050, coupled with the feminization of care and the fragility of family networks, demands an integrated care model that articulates community and specialized environments in a logic of shared and long-term care. The care of elderly people, especially those who require greater support, needs to be conceived as a web of interdependent relationships. Specialized services—which guarantee social protection and technical care—and community and family spaces, where belonging, coexistence, and meaning of life are built, are intertwined within it. The power of integrated care emerges precisely when these spaces connect, creating continuity of bonds and care practices.
The Sepetiba Senior Residential Village, a public long-term care facility managed by the Leão XIII Foundation, has a structure integrated into the community, without walls separating its 28 houses from other homes in the area. However, symbolic barriers persisted, reinforcing institutional isolation and loss of community ties. To overcome these and enable an open-door long-term care facility model as an extension of the community, integration strategies are being implemented that articulate intergenerational projects aligned with the WHO Decade of Healthy Ageing.
Among the initiatives, the following stand out: the Giroteca, a community reading room and space for interaction and learning with a physical and digital collection accessible to the community, guaranteeing the democratization of access to information and technological knowledge, promoting digital inclusion; the Integrated Care Plans, instruments agreed upon between services and the socio-family network for joint monitoring; and partnerships with universities and caregiver training centers.
RESULTS
The Village experience aims to serve as a pilot project for a long-term care facility model that transitions from institutional care to socially shared care, recognizing that caring for older people is a collective task. It thus approaches the idea of a compassionate society, founded on co-responsibility and empathy. The objective of this replicable model is to build innovative and inclusive caregiving communities, combating prejudices such as ageism, familism, and long-term care facility bias.
IMPLICATIONS
The hope is that Village and other LTCF will be recognized as a living part of the territory and not as a rupture from it. That they can promote a symbolic reform in the way society understands aging: institutions that care, educate, articulate and transform. This may be the path to transforming LTCF into living spaces and the territory into a community of care.
Over the past 3 years, the Leão XIII Foundation, a state government agency in Rio de Janeiro that develops social protection programs in the state, has been promoting the repoliticization of care through its Long-Term Care Facilities for the Elderly. By reconfiguring its institutional role, the Leão XIII Foundation seeks to transform LTCF from mere spaces of shelter into political and pedagogical spaces of care, recognizing it as a social right and essential work.
APPROACH:
The aging of the Brazilian population poses the challenge of reorganizing care practices, traditionally centered on the family. The increase in longevity, which will raise the number of elderly people from approximately 33 million in 2025 to approximately 68 million in 2050, coupled with the feminization of care and the fragility of family networks, demands an integrated care model that articulates community and specialized environments in a logic of shared and long-term care. The care of elderly people, especially those who require greater support, needs to be conceived as a web of interdependent relationships. Specialized services—which guarantee social protection and technical care—and community and family spaces, where belonging, coexistence, and meaning of life are built, are intertwined within it. The power of integrated care emerges precisely when these spaces connect, creating continuity of bonds and care practices.
The Sepetiba Senior Residential Village, a public long-term care facility managed by the Leão XIII Foundation, has a structure integrated into the community, without walls separating its 28 houses from other homes in the area. However, symbolic barriers persisted, reinforcing institutional isolation and loss of community ties. To overcome these and enable an open-door long-term care facility model as an extension of the community, integration strategies are being implemented that articulate intergenerational projects aligned with the WHO Decade of Healthy Ageing.
Among the initiatives, the following stand out: the Giroteca, a community reading room and space for interaction and learning with a physical and digital collection accessible to the community, guaranteeing the democratization of access to information and technological knowledge, promoting digital inclusion; the Integrated Care Plans, instruments agreed upon between services and the socio-family network for joint monitoring; and partnerships with universities and caregiver training centers.
RESULTS
The Village experience aims to serve as a pilot project for a long-term care facility model that transitions from institutional care to socially shared care, recognizing that caring for older people is a collective task. It thus approaches the idea of a compassionate society, founded on co-responsibility and empathy. The objective of this replicable model is to build innovative and inclusive caregiving communities, combating prejudices such as ageism, familism, and long-term care facility bias.
IMPLICATIONS
The hope is that Village and other LTCF will be recognized as a living part of the territory and not as a rupture from it. That they can promote a symbolic reform in the way society understands aging: institutions that care, educate, articulate and transform. This may be the path to transforming LTCF into living spaces and the territory into a community of care.
Biography
Psychologist, UFRJ , postgraduete degree in legal psychology (UERJ) and health management (IMS-UERJ . Experience in the field of social protection, in medium and high complexity special social protection services, management and social control of the unified social assistance system. Full member of the State Council of Social Assistance - RJ, represents Rio de Janeiro in the National Coalition on Orphanhood and Rights. Holds the position of vice president of Social Assistance at the Leão XIII Foundation/ERJ. Participating in the Psychology Council System, she is a member of the XX Plenary of the Federal Council of Psychology.
Callum Ferguson
Network Lead
Global Heart Hub
A Patient-Led Roadmap for Change: Policy Action to Transform Care for People Living with Multiple Interconnected Chronic Conditions
Abstract
Background: Cardiovascular disease is not an isolated condition, but part of a growing crisis of multiple interconnected chronic conditions (MICC) that include stroke, diabetes, chronic kidney disease, liver disease and obesity. These diseases are deeply interlinked – sharing risk factors, influencing disease progression and contributing to the development of new or aggravated conditions – yet most health systems remain ill-equipped to provide the coordinated, holistic care that patients need. Patients are left to navigate complex care pathways and bear the burden of disjointed treatment, leading to worsening health outcomes and a higher burden on the healthcare system.
Approach: Global Heart Hub (GHH) designed and delivered a two-day, patient-led Unite Summit to co-create priorities on MICC. The Summit convened 165 delegates, including 65 patient organisations alongside policymakers, clinicians, researchers and industry representatives. To ensure broad representation across the MICC landscape, GHH collaborated with the International Diabetes Federation, the European Coalition for People Living with Obesity, the Global Patient Alliance for Kidney Health, the European Liver Patients’ Association, and the European Kidney Patients’ Federation. The Summit combined plenary sessions, a live survey of all delegates to capture collective perspectives, and structured breakout discussions to facilitate dialogue, gather feedback and identify priority opportunities and solutions.
Results: The collective feedback from the Summit delegates was synthesised to highlight key challenges hindering progress for people living with or affected by MICC. Barriers included the continued dominance of siloed and uncoordinated care, pervasive issues in timely diagnosis, lack of innovation and prevention strategies, and persistent inequities across gender, ethnicity, geography and socio-economic status.
These challenges are pervasive, yet progress is possible through structural, systemic reform. Summit delegates co-created five key joint policy asks for change: 1) multidisciplinary care and navigation for people with lived experience, 2) scale up early detection and community-based screening programmes, 3) accelerate access to innovation and digital health solutions, 4) guarantee equity in cardiovascular and multimorbidity care across gender, geography, ethnic and socioeconomic groups, and 5) prevention, empowerment and mental health integration for people with lived experience.
Under these five policy asks, delegates proposed a variety of innovative and patient-led solutions to reimagine health systems. For example, participants drew focus to the value of integrated, specialist-led teams supported by patient navigators, underscoring the importance of coordinated care pathways that reflect the realities of multimorbidity. Screening and early detection were also seen as opportunities to move care closer to communities, with expanded access to diagnostics in primary care and embedded mental health assessments.
Delegates further highlighted the transformative potential of digital health and innovation, from AI-driven diagnostics to telehealth and precision medicine. Equity featured prominently, with calls to embed gender-sensitive protocols, invest in underserved communities and ensure diverse patient representation in research and policymaking.
Implications: The Summit showed the value of patient-led collaboration in shaping health policy across interconnected conditions. A global report, launched from the findings, provides an advocacy tool to drive widespread change. International delegates can adapt these shared priorities to advance equity, integration and innovation in health systems worldwide.
Approach: Global Heart Hub (GHH) designed and delivered a two-day, patient-led Unite Summit to co-create priorities on MICC. The Summit convened 165 delegates, including 65 patient organisations alongside policymakers, clinicians, researchers and industry representatives. To ensure broad representation across the MICC landscape, GHH collaborated with the International Diabetes Federation, the European Coalition for People Living with Obesity, the Global Patient Alliance for Kidney Health, the European Liver Patients’ Association, and the European Kidney Patients’ Federation. The Summit combined plenary sessions, a live survey of all delegates to capture collective perspectives, and structured breakout discussions to facilitate dialogue, gather feedback and identify priority opportunities and solutions.
Results: The collective feedback from the Summit delegates was synthesised to highlight key challenges hindering progress for people living with or affected by MICC. Barriers included the continued dominance of siloed and uncoordinated care, pervasive issues in timely diagnosis, lack of innovation and prevention strategies, and persistent inequities across gender, ethnicity, geography and socio-economic status.
These challenges are pervasive, yet progress is possible through structural, systemic reform. Summit delegates co-created five key joint policy asks for change: 1) multidisciplinary care and navigation for people with lived experience, 2) scale up early detection and community-based screening programmes, 3) accelerate access to innovation and digital health solutions, 4) guarantee equity in cardiovascular and multimorbidity care across gender, geography, ethnic and socioeconomic groups, and 5) prevention, empowerment and mental health integration for people with lived experience.
Under these five policy asks, delegates proposed a variety of innovative and patient-led solutions to reimagine health systems. For example, participants drew focus to the value of integrated, specialist-led teams supported by patient navigators, underscoring the importance of coordinated care pathways that reflect the realities of multimorbidity. Screening and early detection were also seen as opportunities to move care closer to communities, with expanded access to diagnostics in primary care and embedded mental health assessments.
Delegates further highlighted the transformative potential of digital health and innovation, from AI-driven diagnostics to telehealth and precision medicine. Equity featured prominently, with calls to embed gender-sensitive protocols, invest in underserved communities and ensure diverse patient representation in research and policymaking.
Implications: The Summit showed the value of patient-led collaboration in shaping health policy across interconnected conditions. A global report, launched from the findings, provides an advocacy tool to drive widespread change. International delegates can adapt these shared priorities to advance equity, integration and innovation in health systems worldwide.
Biography
Joanna Ten-Kate is the Patient Community Engagement & Development Lead at Global Heart Hub, where she works to elevate patient voices in decision-making and facilitates collaboration between patient organisations, advocates, and partners worldwide to further cardiovascular treatment and care. Originally from the United States and currently based in Galway, Ireland, she has a background in policy research and non-profit advocacy, with experience in federal and state health agencies. Joanna holds an MSc in Public Policy and Administration from the London School of Economics.
Chair
Ms
Dorcas Collier
COO
Halocare