Social care informatics as an essential part of holistic health care: a call for action

Purpose: The authors identified the need for a cross-disciplinary research view of issues to ensure an integrated citizen-centric support to achieve optimal health of individual citizens and, in particular, the role of informatics to inform and coordinate support towards integrated and holistic care. Method: An Exploratory Workshop was approved and sponsored by the European Science Foundation. Twenty-three participants from 15 countries attended, covering a full range of health, social care and informatics professions and disciplines. Results: The participants found strong common ground in identifying key issues to be addressed if citizens with compromised health are to receive integrated and coordinated support to a common set of objectives, while also ensuring appropriate choice and support for citizen, family and other informal carers. At the same time, optimal health was identified as a fundamental human right, and that achieving this is a necessary priority of a caring society. Moreover, Europe has a commitment to researching and developing health informatics (e-health), though not yet giving a priority to this integration of health and social care. Specifically the following main informatics challenges to be addressed were identified: (1) to identify available information and communication needs related to different scenarios of use in the intersection between health and social care, (2) to develop and map shared ontologies, and standards for integration and/or brokerage, (3) to enable planned information access and sharing, shaping a system of trust where the patient is an active partner and policies are established considering all partners/interests, (4) to investigate the use of automatic/intelligent knowledge based and context-relevant services, and (5) empowering the citizen (or their selected agent) as co-producer through modern informatics tools, while carefully avoiding selective disempowerment of the most vulnerable. Conclusion: The Exploratory Workshop resulted in a unanimous Declaration for action, which is presented appended to this paper