"Utilising data within health and social care - priorities for data-sharing, delivering efficiencies, and driving research and innovation" was the title of the Westminster Health Forum's excellent virtual conference held on 20 October 2021.
The key themes that arose repeatedly throughout the morning's sessions were:
- that access to high quality, large-scale datasets is needed to allow health research in the UK to reach its full potential, and this access is currently lacking/has too many obstacles;
- to remove uncertainties and increase innovation, more guidance is needed (but not from more regulatory bodies - there are enough already!) on use of health data in specific industries (e.g. the tech industry) - this could helpfully come in the form of sector-specific Codes of Conduct under the GDPR;
- vitally, the government and the NHS need to build public confidence through complete transparency on health data uses and sharing, employing different approaches to better develop trust within individual communities.
Whilst there are many benefits from safe and secure sharing of health data, the British public is unlikely to engage until it fully understands where its most personal and sensitive data is going and who will have access to it, for what purposes. More needs to be done urgently, to allow data value to be fully realised, culminating in much-needed healthcare developments for all.
"There is no national emergency around data privacy in healthcare, but we need to improve data access...Data saves lives"