Developing a new understanding of enabling health and wellbeing in Europe: harmonising health and social care delivery and informatics support to ensure holistic care

Europe faces significant challenges to its health and care services due to demographic change, being at the beginning of a large and continuing rise in the number and proportion of older citizens, while advances in healthcare mean that an increasing number of these and other adults will have enduring chronic health conditions. But for all citizens with actual or potential health problems, the maintenance of optimal health depends not just on healthcare services, but on support for nutrition, hygiene, mobility and shopping, socialisation, warm dry housing and other aspects of daily living, as without these health will be compromised and deteriorate. This demand surge is happening at a time when Information and Communication Technologies (ICT) are increasingly being used in other service sectors to enable consumer customisation and better resource management. An objective for all health systems, and for patients, is to minimise hospital stays and maximise care at home, but hitherto the practical need to observe the patient's state of health has extended hospital stays. Similarly there is a drive to minimise for quality of life and economic reasons admission to long-term institutional care and instead extend support to enable living at home. Traditionally any support needed by an individual has normally been provided by family members, often assisted by the local community, while social services have been the fall back provider when the family cannot support, either by direct provision or by mobilising specific services such as delivered hot meals. Housing agencies and other bodies have also had an important role. However, other demographic changes are significantly reducing the capacity of families to provide daily ongoing support. This means that health services are increasingly providing long-term monitoring and support to those living with chronic disease and frailty, while social services are increasingly needed to provide ongoing support. Many individual citizens are necessarily in receipt of both health and social care support, yet in all but a very few European countries these services are provided quite independently one from another, with minimal day to day liaison. A number of drivers for change are now necessitating significant change, and the social sciences have a key role to play in enabling successful progress. At a macro level, across Europe the combination of the economic downturn and the demographic-led increase in demand means that health and social care services are under ever increasing pressures, while constant growth of services is not affordable nor will the labour market support ever continuing expansion. This paper presents the case for systematic research activity in the social sciences, at European and national levels, to further the interlinked citizen- focused objectives of:close integration at delivery level of health care and social care support of individual's health, personalisation of care delivery including reasonable accommodation of individual choice, ensuring effective use of ICT applications based on user acceptability, bringing processes of consent, delegation, representation, coordination and privacy into the electronic era, ensuring respect for and teamwork with formal carers and the informal care team, ensuring equity in an electronic era regardless of digital literacy, assets and connectivity, examining stable and sustainable models of trusted infrastructure provision, establishing governance, authentication, management, and sustainability principles.