Data Sharing in a Pandemic: Three Citizens’ Juries Juries’ Report
1st October 2021
What policy questions?
The COVID-19 pandemic brought many changes to people’s lives, and to how health and social care services in England were delivered. One area receiving relatively little media and public attention was how health and social care data sharing changed during the pandemic. Under legal powers in the Health Service (Control of Patient Information) Regulations 2002, the Secretary of State for Health and Social Care issued notices enabling increased data sharing amongst health and social care organisations. These were introduced specifically to address challenges arising in the pandemic, and not for non-COVID-19 uses. These Control of Patient Information (COPI) Notices, first issued on 1 April 2020, were temporary legal powers lasting six months, and have subsequently been renewed (currently until end September 2021).
A number of major initiatives were introducedto take advantage of these powers and increase data sharing between health and social care organisations. These initiatives have collected and produced valuable information to tackle the pandemic. They potentially could continue to be useful well beyond the COVID-19 pandemic. This raises policy dilemmas about the future of these initiatives. For example, should these data sharing initiatives, created under temporary legal powers to tackle COVID-19, continue beyond the pandemic, and if so for how long? Who should make these policy decisions?
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