Data Trust Advisory Board
The Data Trust Advisory Board (DataTAB) provides independent review and advisory recommendations on all Data Use Applications received by INSIGHT.
What is the DataTAB?
The DataTAB exemplifies INSIGHT’s commitment to involving patients, the public and others stakeholders in deciding how NHS data is used for research and for what purpose. As an independent panel reviewing the ethical and patient benefit components of every Data Use Application received by INSIGHT, its membership represent a broad range of opinions, experiences and perspectives.
Current members are listed below, with links to their extended biographies. Former members are listed on the DataTAB archive page.
We work with the Open Data Institute
The Open Data Institute (ODI) supports the functioning of the INSIGHT DataTAB. More information about this can be found in this series of blog posts on the ODI website. Members of the ODI Secretariat are also listed below. If you have any queries, please contact Tara Lee: tara.lee@theodi.org.
DataTAB members
“The acceptable future of fair and accountable use of health data needs public and patients at governance level, and DataTAB will spearhead this transformation.”
Dr Wen Hwa Lee, DataTAB chair
Dates of DataTAB meetings in 2024
-
Feb 23rd
-
Apr 19th
-
Jun 7th
-
Aug 9th
-
Oct 4th
-
Dec 6th
Data Use Applications made to INSIGHT
Enquiries and applications to use INSIGHT data come to us from researchers across sectors in the life sciences ecosystem. The infographic below provides a snapshot of our enquiries and applications sources.
All Data Use Applications made to INSIGHT are subject to an ethical evaluation of the purpose, value, and benefit of the research by the INSIGHT Data Trust Advisory Board (DataTAB).
The INSIGHT governance process
All applications to access data through INSIGHT are subject to a three-stage process:
-
An initial screening to ensure the research adheres to the ‘five safes’ (find out more on the About your data page)
-
An ethical evaluation of the purpose, value, and benefit of the research
-
Final approval by INSIGHT
The INSIGHT Data Trust Advisory Board (DataTAB) is responsible for stage 2 of this process, and will provide their recommendation for stage 3.
The DataTAB provides oversight and scrutiny to INSIGHT by:
-
Assessing individual applications to access data through INSIGHT using the criteria developed by DataTAB (listed below). These criteria are regularly reviewed.
-
Providing recommendations to the INSIGHT Data Controllers to accept or refuse an application based on this assessment.
-
Providing feedback on:
-
the process for granting or denying requests to access data through INSIGHT.
-
the outcomes from granting or denying access to data.
-
As citizens with a wide range of experiences, members of the DataTAB are encouraged to share their views and learn from each other’s insights. Working together, they will deliberate each request and build a consensus around it. They will then share their findings with the wider community.
The Terms of Reference for the DataTAB can be found here (PDF, 150 KB). To ensure transparency, minutes and recommendations from INSIGHT DataTAB meetings will be made public on this page in due course.
Criteria for assessing applications to INSIGHT
When assessing applications, the DataTAB will ensure that all the following questions have been answered:
-
Is there a clear clinical outcome, social care or public health outcome?
-
Does the proposed application pose a significant risk to individuals’ privacy?
-
If there are risks requiring mitigation, do we believe that the risk mitigation process(es) is realistic and sufficient?
-
Has the applicant taken into account sufficient public/ patient views when designing the project proposal? Has the applicant consulted the public/ patients in the formulation of their research question/ project proposal (where this would be appropriate)?
-
Does the project outcome lead to value generation?
-
Will the proposed outcome disadvantage any group or individual?