Data governance
The Eastern England SDE Data Access Committee (DAC) decides who can access de-personalised NHS data for research in the Eastern England SDE.
The Eastern England SDE DAC is comprised of members of the public alongside experts/professionals in a range of fields related to data science, privacy, security, ethics, healthcare and research.
The DAC meets approximately monthly to review and discuss Data Access Requests from researchers. The committee can choose to approve, approve subject to specific revisions, request resubmission following changes or further information or reject applications.
The decision must be unanimous across the committee, and records and minutes of each meeting are retained for transparency and review.
Each meeting of the Data Access Committee includes the following voting members:
- CUH Data and AI Research Governance Lead
- CUH Data Protection Officer or deputy
- CUH Chief Clinical Informatics Officer
- Representation from each data contributing centre that contributes data to the particular project under DAC review
- Public representatives
For a DAC meeting to have sufficient and appropriate members to come to a decision, there must be appropriate representation for each role outlined above and sufficient public members to make up 50% of the voting members.
Each meeting also includes some non-voting members who may be there to take minutes, support public members or observe the discussion as part of their training.
Membership of the Eastern England DAC
Membership of the DAC for each meeting is determined by the nature of the projects that the committee are assessing in a given month to ensure that there is representation from each NHS organisation supplying data and sufficient public representation from data providing regions.
Meetings are convened and chaired by Cambridge University Hospitals NHS Foundation Trust (CUH) as the lead organisation and data controller for the Eastern England SDE.
Public Data Access Committee members
Public members of the Eastern England SDE DAC must reside in either the East of England or the East Midlands, not be working in a data science or health research role* and be interested in the fair and ethical use of NHS patient data for research.
The DAC chair and secretary can invite public members from a pool of up to 20 members, who have a range of backgrounds and experiences and who come from across the region covered by the Eastern England SDE. For each meeting, public members are invited to match the regions and conditions relevant to the applications under consideration where possible.
All DAC members (including public members) receive relevant training in assessing Data Access Requests and contributing to meetings. They are supported before, during and after meetings to contribute meaningfully and equally to the decision about each project.
Public contributors are offered an honorarium in line with nationally accepted rates in recognition of their contribution to each meeting.
Review criteria
Members review projects against the ‘5 safes’ criteria as follows. These criteria are applied to the same standard whether the researcher is from an NHS, academic, charity or commercial organisation.
Is the use of data appropriate?
Can the users be trusted to use the data in an appropriate manner?
Is the access environment secure?
Is there a disclosure risk in the data itself?
Are the outcomes safe and appropriate to release from the SDE?
The SDE has been built specifically as a safe setting, thus in practice DAC members will focus on safe projects, people, data and outputs.
To submit data requests, researchers and organisations must be validated against national criteria. However, the DAC can still consider the suitability of a specific researcher to undertake a specific research project.
All DAC members receive a copy of the Data Access Request (DAR) application form for each project to support their assessment. The DAR form has been developed to request the information that DAC members may need to review an application, but the DAC may request any additional information required before or after a meeting to allow an appropriate assessment of each project. The DAR form is under constant review to ensure it is as easy as possible for both researchers and DAC members to use.
What happens after the DAC meeting?
Following a DAC meeting, the decision is communicated to the researcher, along with any relevant feedback or required follow up information or changes from the researcher.
If a project has been approved, contracts and data access agreements are drawn up for the researcher to sign and checks are made on any other approvals required for a specific project. Final costs for the project are calculated and confirmed with the research team.
Once approvals and costings are agreed and in place, data technicians from participating NHS organisations and the Eastern England SDE team can arrange for the specified data to be made available through the SDE.