This workshop focused on developing data sharing agreements with NHS Digital.
In April 2022, CLOSER hosted a one-day online workshop with NHS Digital to identify the potential barriers faced by longitudinal population studies (LPS) in developing and approving data sharing agreements. We then identified potential routes to address these, mechanisms to make the process clearer and more effective (for both parties) and to prioritise remedial solutions.
Chaired by Andy Boyd, Chair of the CLOSER Data Linkage Working Group and Director of the UK Longitudinal Linkage Collaboration, the workshop aimed to improve the ability of the LPS community to secure data sharing agreements with NHS Digital. All of the NHS Digital ‘Senior Data Approvals Owners’ were in attendance.
Delegates also had the opportunity to:
- workshop common issues with the data sharing application process
- identify and prioritise potential solutions to these common issues
- meet and work with NHS Digital Senior Data Approvals Owners who are responsible for assessing data sharing applications and defending applications to the Independent Group Advising on the Release of Data (IGARD).
Delegates were also given the opportunity to meet 1:1 with NHS Digital representatives after the workshop to discuss their specific applications.
Please note, this workshop is just the start of the process and will provide a forum to identify challenges and begin working with NHS Digital to resolve these.
This workshop stems from a CLOSER data linkage project which has also produced an outline framework for the efficient onward-sharing of linkage longitudinal study data and NHS Digital records. The guidance can be downloaded from the CLOSER website.
Workshop agenda
11:00-11:10 Welcome and introductions – Andy Boyd (University of Bristol), Andy Wong & Danielle Freitas Gomes (UCL)
11:10-11:20 A summary of the NHS Digital application process – Mujiba Ejaz (NHS Digital)
11:20-11:30 Roles of the Case Officers and NHS application staff – Charlotte Skinner (NHS Digital)
11:30-11:40 The role of the senior approvals team (SAT) – Kimberley Watson (NHS Digital)
11:40-11:50 An insight into IGARD – Duncan Easton (NHS Digital)
11:50-12:00 A summary of the regulatory landscape – Alex Bailey (Medical Research Council)
12:00-12:45 Lunch break
12:45-14:45 Round table / open discussion:
Identifying issues which complicate & delay LPS applications
- for NHS Digital to raise precedents where these exist
- Prioritisation of issues identified (Open table)
- Addressing the top 3 concerns (Open table)
14:45-15:00 Next steps and AOB
15:00-16:00 Applications 1:1 (Pre-booked appointments with SAT)
Further information
If you have any queries or require further information about this event, please contact our Digital Communications and Events Manager, Jennie Blows (j.blows@ucl.ac.uk).