Information-sharing in health and social care: Lessons from a socio-technical initiative

ABSTRACT

Advances in information technology have led to new and innovative approaches in data-sharing, analysis, interpretation, and the potential for real-time responses to changes in health and social care status. However, health and social care information is not only complex but often socially and personally sensitive in ways that do not apply in other domains. This requires adoption of a tailored interdisciplinary (social, ethical, legal, technical and data science) and intersectoral (health and social care, academic and commercial institutions and citizens) approach to technology development. The authors present some important lessons to date from ongoing development of an innovative infrastructure for sharing health and social care data.

IMPACT

Data is essential for delivering direct care, service planning and improvement, and research ethically, lawfully, safely and efficiently. The article exemplifies, with the help of a region-wide health and social care information-sharing initiative, the importance and need for strategic planning and collaborative decision-making within each of these dimensions. It thus contributes to improved understanding of the scope, opportunities, benefits, limitations and practicalities of information-sharing in health and social care. The article is therefore relevant for all stakeholders, including patients, practitioners from across care settings, commissioners, managers, technologists, academics, innovators, designers and governance teams.

KEYWORDS:

• Citizen engagement
• Connected Health Cities
• data-sharing
• Great North Care Record
• health and social care
• health information exchange
• information-sharing
• professional engagement

Acknowledgements

This work is funded by CHC NENC (Project 1—RES/0150/7943/202), which is one of the four projects under the wider CHC programme that is led by Northern Health Science Alliance, funded by the Department of Health and delivered by a consortium of academic and NHS organizations in the north of England. Associated research and development work to facilitate data access is supported at Newcastle University by the METADAC study (Managing Ethico-social, Technical and Administrative issues in Data ACcess) funded jointly by the Medical Research Council, the Wellcome Trust and the Economic and Social Research Council (MR/N01104X/1 and MR/N01104X/2) and by the 58FORWARDS study (Fostering new Opportunities for Researchers via Wider Access to Research Data and Samples) funded jointly by the Wellcome Trust and Medical Research Council/MRC (108439/Z/15/Z).

We would like to make a special mention of our team members, Mark Walsh, Mark Westwood, Ian Briggs, Seamus O’Neill, Heather Parker, Sarah Ashcroft, Tracey Best, Annette Chambers, Wendy Craig, Ian Lowry, Denis Martin and Stephanie Mulrine and thank them for their sustained efforts and significant contributions without which CHC NENC and GNCR would not have been possible.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 https://www.connectedhealthcities.org/connected-health-cities/cumbria-and-north-east-england/

2 https://www.greatnorthcarerecord.org.uk/

3 https://healthcaregateway.co.uk/services/

4 https://www.informationsharinggateway.org.uk/