ICB data project rejected over data rules concerns

An application from OneLondon relating to the London secure data environment was knocked back by the national advisory group for data (AGD), according to minutes of a meeting held in September.

OneLondon is a partnership made up of the five integrated care boards in London, while the SDE is an attempt to join up all health and care data from across the capital for the purposes of providing care as well as research and planning.

According to the minutes, one of the aims of the application was to “make data available to third parties for the purpose of direct care”, but the advisory group warned that there was no “clear definition” of what was meant by direct care, and many of the examples provided did not constitute direct care.

They said: ”It was noted that this was an evolving area, and AGD suggested that OneLondon and NHS England ensure that the direct care uses clearly and completely aligns with current policy”.

The AGD, which is made up of both independent members and NHSE staff, also raised concerns that some of the data, which would supposedly be accessed for the purposes of direct care, would include ex-residents and deceased individuals, who therefore would not be receiving care.

Similar concerns were raised when OneLondon submitted an earlier application in March.

At that time, the AGD advised that it was concerned about a lack of clarity around who would be the data processors and controllers in the arrangement, given that the application listed the individual ICBs as both.

The September minutes said: “The group were broadly supportive of the purpose outlined in the documentation provided, but were not supportive of the application at this time”.

The group also queried whether direct care was in the purview of ICBs if they were to be the data controllers.

The OneLondon SDE is set to build on existing initiatives, including the Discover Now health data research hub. Discover Now was formerly led by managing director Axel Heitmueller, who in June was appointed as health adviser to the prime minister.

OneLondon must now resubmit its application to the advisory group once it has addressed the concerns raised. It this week confirmed it would re-submit for the November AGD meeting.

In a statement sent two weeks after HSJ asked about the project OneLondon said: ”The programme will make a major difference for London - the reality is that data saves lives. Rightly, for a project of this complexity, there are robust assurance processes and feedback from the AGD has been extremely valuable as the project progresses. The latest meeting commended the programme team for the application and identified several areas for further development - we will work with them to address these.

“OneLondon has been pioneering in its transparent approach, including multiple public deliberations on the uses of health and care data. In these, Londoners have consistently expressed support for data sharing that improves direct care, planning, and research.”