Health systems and long-term care for older people in Europe. Modelling the interfaces between prevention, rehabilitation, quality of services and informal care—an action research project

OBJECTIVE: The objective of INTERLINKS, a project that is co-financed by the 7th Framework Programme of DG Research, is to construct and validate a general model to describe, analyse and improve long-term care (LTC) systems for older people from a European perspective. The project is co-ordinated by the European Centre for Social Welfare Policy and Research (Vienna) and carried out by 14 research agencies from 16 European countries. This 3-year project will complete in October 2011. METHOD: Since LTC exists at the boundaries of health and social care systems and is often undefined and underspecified as a discrete system, INTERLINKS is conceived as an interactive study of applied social research. A methodology based on some principles of action research was chosen, in order to facilitate cross-national comparisons and enable individual Member States to compare their developmental status and to identify future areas for national development. In three cyclical rounds of investigation, production and eventual validation (see Figure 1), key research questions have been tested and reviewed by groups of participating countries, in such a way that a model in the form of an analytical toolbox is currently evolving out of the process. Key to the process is a validation procedure that will ensure a robust outcome in terms of methods and tools, carried out in close cooperation with many parties, such as: researchers, health professionals, politicians, economists, users and other experts on LTC, including those at EU level. First, the national research teams prepared vignettes to describe the pathway of a stroke or dementia patient through their country’s system(s), from the perspective of the roles of informal care, quality assurance and assessment, prevention and rehabilitation, considering also regulation and financing issues (see Figures 2 and 3). In focusing on gaps and interfaces between services and organisations involved, problems and difficulties perceived were highlighted visually in posters. In a second phase, national and European overview papers were compiled, focusing on ‘Informal Care’, ‘Prevention and Rehabilitation’, ‘Quality Management and Quality Assurance’ as well as on ‘Governance and Financing’. MODEL: These elements informed and influenced the ongoing development of the evolving INTERLINKS model which is currently being validated by National Expert Panels and a European Sounding Board. During the final cyclical phase of the project the web-based model will cover all themes and key-issues necessary to describe and analyse LTC systems, including practice examples. From these examples interested stakeholders should be able to gather and reflect upon issues that relate to their own national context and find answers from how other countries have solved similar challenges at different developmental stages. While developing solutions to above-mentioned issues the model will also emphasise links, gaps and interfaces addressed by the practice examples. An interactive database for all EU countries will thus be available to which interested stakeholders may refer to, but to which they may also add pertinent examples from their national experiences and/or use them to generate ideas for improving future LTC practice for older people. RESULTS: Selected results of this process, such as highlighted findings from specific research foci and the draft web-based model to describe, analyse and improve LTC, will be presented at the conference. Kai Leichsenring will introduce the project and some key findings from emerging LTC systems in Europe concerning links and interfaces between health and social care with a view on informal care, quality management and governance and financing. Lis Wagner will show examples for embedding prevention and rehabilitation also in the context of LTC for older people, with a specific focus on Danish experiences. Lorna Campbell will show how interested stakeholders can navigate through the INTERLINKS model—from vignettes describing gaps and bottlenecks to practice examples showing solutions and answers to pertinent key-issues in improving emerging LTC systems in Europe.