Periodic Reporting for period 1 - BUILD (Building ecosystems of person-centered integrated care through co-creation)
Reporting period: 2024-03-01 to 2025-05-31
The significant increase of the older European population with complex care needs calls for better integration and coordination between health care and social services. The aim of the BUILD-Project here is to develop and provide Person-Centred, Integrated Long-Term Care
(PC-I-LTC) in the countries of the European Union.
The final goal of BUILD is to develop a framework and toolbox that assists relevant stakeholders at micro, meso, and macro levels in implementing participatory co-design and community engagement as methods to develop socially inclusive and sustainable PC-I-LTC solutions for older adults with complex care needs that can be evaluated by the social return on investment (SROI). BUILD is increasing the understanding of PC-I-LTC by mapping and analyzing existing eco-systems across Europe and identifying their corresponding regulatory frameworks and current challenges. BUILD is going beyond these challenges by conducting a longitudinal, cross-national study that investigates care integration on a practical level, developing scientific evidence on how social inequalities shape the access to, and the outcomes of diverse forms of care and their integration while also highlighting the needs and required skills for PC-I-LTC from the patients’ and caregivers’ perspective. Throughout the project, BUILD is involving communities, older adults with complex care needs, in-/formal caregivers, and policy makers on different regulatory levels in the participatory co-design of PC-I-LTC solutions and develop policy recommendations based on the experiences gathered. Ultimately, BUILD will develop a co-design framework and toolbox, as the main outcome of the project, that supports the implementation of PC-I-LTC through co-design and community engagement.
(PC-I-LTC) in the countries of the European Union.
The final goal of BUILD is to develop a framework and toolbox that assists relevant stakeholders at micro, meso, and macro levels in implementing participatory co-design and community engagement as methods to develop socially inclusive and sustainable PC-I-LTC solutions for older adults with complex care needs that can be evaluated by the social return on investment (SROI). BUILD is increasing the understanding of PC-I-LTC by mapping and analyzing existing eco-systems across Europe and identifying their corresponding regulatory frameworks and current challenges. BUILD is going beyond these challenges by conducting a longitudinal, cross-national study that investigates care integration on a practical level, developing scientific evidence on how social inequalities shape the access to, and the outcomes of diverse forms of care and their integration while also highlighting the needs and required skills for PC-I-LTC from the patients’ and caregivers’ perspective. Throughout the project, BUILD is involving communities, older adults with complex care needs, in-/formal caregivers, and policy makers on different regulatory levels in the participatory co-design of PC-I-LTC solutions and develop policy recommendations based on the experiences gathered. Ultimately, BUILD will develop a co-design framework and toolbox, as the main outcome of the project, that supports the implementation of PC-I-LTC through co-design and community engagement.
Until the present moment, the project conducted a scoping review to gain a comprehensive understanding of the structure of PC-I-LTC ecosystems. We identified the relevant characteristics of PC-I-LTC ecosystems using a micro-based perspective and addressed the use of Social Return on Investment (SROI) to evaluate integrated LTC solutions for older adults. A further literature review was done to identify validated evaluation criteria and possible indicators for the three transversal topics: person-centredness, inequalities and technical requirements. In addition to the base scientific work, the BUILD project has generated evidence on how territorial, gendered, and socio-economic inequalities shape care transitions and care trajectories across different European welfare states. This knowledge was further enriched through qualitative research. Semi-structured interviews have been conducted with more than 120 participants, including older adults with complex care needs, informal caregivers, and formal care professionals. The combination of these methods has yielded in-depth insights into the lived experiences of care transitions, the mechanisms through which social inequalities influence these processes, and the specific needs and wishes of older adults and their caregivers in relation to integrated long-term care. In a further work package researchers are developing the methodology for engagement activities, Online Deliberative Forums and the Scenario workshops. The engagement methodology will facilitate the identification of barriers in current care practices and highlight opportunities for improvement. The outcome of the latter-mentioned work will contribute to the development of a toolbox that supports the implementation of PC-I-LTC in Europe. A dedicated project group has conducted a critical review of existing regulatory frameworks for integrated care solutions in Europe. A framework for person-centred integrated long-term care (PC-I-LTC) has been developed, drawing on established models such as SCIROCCO and SELFIE, as well as insights from experts and members of the Association Board. In parallel, the group is working on a comparative analysis of current policy practices and an evidence-based gap analysis.
The project elaborated a description of a care ecosystem based on a scoping review of published literature which focuses specifically on person-centred integrated long-term care and presents the system from a micro-based perspective (based on the model of a care triad). In a further step a literature review resulted in a structured set of evaluation criteria to assess PC-I-LTC concepts regarding person-centredness, inequalities, and technical requirements. A Portugues partner went beyond existing work by synthesizing for the first time how SROI has been applied specifically to long-term care for older people. In a more practical work package important results have been generated that contribute to understanding and addressing inequalities in care transitions across Europe across different time points. The quantitative study identified five distinct care trajectories in later life and demonstrated how socio-economic determinants—particularly socio-economic status (SES)—structure these trajectories. To our knowledge, this is one of the first dynamic analyses of unmet needs in long-term care. The activities of one of the BUILD work packages have focused on identifying promising policy practices and developing technical methodologies to support their assessment. As part of this effort, a set of criteria has been established to evaluate person-centred and integrated long-term care (PC-I-LTC) policy and governance solutions across the different ecosystems considered in the BUILD project — including home care, community-based care, inpatient care facilities, and intermediate settings.