As identified in the IAPDR minutes, panel members have provided advice, steer and challenge to support the establishment of NDRS data requests within NHS Digital. Key areas of concern identified by members and the mitigation actions implemented are listed below:
Progressing the Office of Data Release (ODR) transition backlog and post transition requests
In response to the backlog of NDRS data requests that it inherited at transition on 30 September and the growing number of subsequent requests, NHS Digital took a decision to augment the initially identified UKHSA data release provision by also accelerating the movement of post transition requests to its Data Access Request Service (DARS).
Whilst this move was originally planned for September 2022, a phased introduction of this service was brought forward and commenced in May 2022.
Data release register
UKHSA is responsible for publishing a Data Releases Register that covers all PHE data releases to 30 September 2021.
NHS Digital has published ODR data releases from October 2021 to 21 April 2022.
De-risking NDRS data requests
It was acknowledged that it was challenging for NHS Digital to reconcile the NDRS data request backlog and post transition data requests along with the novated data sharing agreements and exceptions.
As a result, NHS Digital undertook analyses and finalised a report to assess any inherited risks from it receiving the NDRS data release service from PHE.
Mindful of the disruption caused by the movement of the service, NHS Digital and IAPDR members have been seeking ways to improve the situation and to mitigate delays in research from happening and quality of care from improving.
To support this process, joint communications have been released by NHS Digital and UKHSA in May 2022 and more specific NDRS data release use case messages are being developed in line with the implementation phases of the new DARS service.