Government called on to unlock health data for charities

Written by Joe Lepper

A group of 24 charities is calling on the government to give them access to a raft of currently “inaccessible” health and wellbeing data to help improve the support they offer.

The group has written to secretary of state for health Jeremy Hunt, as well as senior NHS officials including NHS England chief executive Simon Stevens, saying that access to a ‘Health Data Lab’ of statistics would help them to alleviate pressure on health services.

This is particularly the case regarding work to prevent accidents, healthy living promotion and keeping people out of hospital, says the group, which includes those in the health sector such as British Lung Foundation and homelessness charity St Mungos.

“Access to patient data would mean that the we could highlight areas for much needed improvement in diagnosis and treatment for lung patients; improving lives and spending taxpayers’ money wisely with the best possible results,” said a British Lung Foundation spokesperson.

Data received would be entirely confidential, the group stresses, with charities only receiving aggregate, anonymised reports of results.

A similar data sharing arrangement has already been put in place by the Ministry of Justice, via its Justice Data Lab, to organisations involved in the rehabilitation of offenders.

A St Mungo’s spokesperson added: “A tool like the Health Data Lab could help us track our clients’ health progress after they move on from our hostels and supported accommodation.

“If we had access to data on former clients’ use of A&E and ambulance service and engagement with planned healthcare we could better assess the long-term impact of our services.’

The group is being coordinated by New Philanthropy Capital, which says the move is vital to helping charities better assess their impact, lead to more effective NHS commissioning and financial savings.

NPC interim deputy head of charities Katie Boswell said: “A Health Data Lab would help improve the effectiveness of our health system. What is more it would allow charities to understand and show what their impact is, so enabling NHS commissioners and other players to work with them more sensibly.”

The letter, which the group is not releasing publicly, has also been sent to Andy Williams, chief executive of NHS Digital and Dr Sarah Wollaston MP, chair of the House of Commons health select committee.

Other charities involved in the group include Mind, Stroke Association, Alzheimer’s Society and Mencap.

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