Health data access for just £1

NHS England wants to reduce the cost for researchers to access expanded healthcare datasets from around £30,000 to £1.

The commissioning board’s chief data officer Geraint Lewis told EHI that it wants to reduce barriers to accessing the new datasets being created by the care.data programme.

NHS England has launched a public consultation today on plans to regularly extract an expanded Hospital Episode Statistics dataset, including things like prescriptions and nursing observations.

This will feed into care.data, which broadly has five pipes of information colour-coded to reflect the risk to a person’s confidentiality of the data flow; one green; two amber; and two red.

The two amber streams of information are pseudonymised and can only be given to accredited users. One set will be for the “NHS family” such as commissioners, providers and the Care Quality Commission.

The other is for use by public health services, researchers and think tanks and currently comes with a hefty price tag.

“We think £20,000-£30,000 is a barrier we would like to remove if possible. We want more people analysing this data because we see the benefits it leads to,” Lewis said.

The plan is to reduce the cost to just £1.

One “exciting” way in which a red-coded ‘pipeline’ of information will be used is allowing a person to download their own aggregated data.

They could then choose to share it with caregivers or with clinicians in another country if they are on holiday.

Lewis said patients could also choose to send their hospital data to their favourite charity for analysis.

He explained that it is similar to the ‘blue button’ idea being explored by NHS England for patients to download provider records such as from their GP practice.

However, the board is undecided about whether to call downloading of aggregated care.data information by patients the ‘blue button’ as well as this may cause confusion.

Blue Button, together with the slogan ‘Download my Data’, was introduced by the US Veterans Association beginning 2010.