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Data Trust Advisory Board

The Data Trust Advisory Board is a key aspect of INSIGHT’s governance

 

Members of the INSIGHT DataTAB


The DataTAB is central to INSIGHT’s commitment to involve the public, patients and others in deciding how it shares data and what research that data is used for. Its members represents 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.

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. 

Angela Coulter

Member

Angela Coulter chairs the Public Advisory Board of HDR UK

Jess Morley

Member

Jess Morley is a graduate researcher at the Oxford Internet Institute's Digital Ethics Lab

Nisha Taylor

Member

Nisha Tailor is Director of Policy and Public Affairs at the Association of Medical Research Charities

Alastair Denniston

INSIGHT representative

Alastair Denniston is a consultant ophthalmologist at University Hospitals Birmingham

Yewande Omoniyi

Public member

Yewande works as a medical writer for a medical communications agency

Ian Cheng

ODI Secretariat

Consultant, ODI

Neil Ebenezer

Member

Dr Neil Ebenezer works for the Department for International Trade as a Medical Technologist Specialist

Julie Parker

Patient member

Julie Parker is a recently retired Chartered Loss Adjuster

Tara Lee

ODI Secretariat

Senior Consultant, ODI

Wen Hwa Lee

Chair

Dr Wen Hwa Lee is the CEO and Chief Scientist at the charity Action Against Age-Related Macular Degeneration

Angus Patrick

Patient member

Angus Patrick is an IT Consultant currently working for Cadence Innova in London

 

Dates of upcoming DataTAB meetings

  • 27 January 2023

  • 24 February 2023 

  • 17 March 2023

  • 28 April 2023

  • 19 May 2023

  • 30 June 2023

  • 21 July 2023

  • 15 September 2023

  • 27 October 2023

  • 17 November 2023

  • 1 December 2023
     

“I'm passionate about overcoming the technical, cultural, regulatory and social barriers to better responsible data use in the NHS”


Jess Morley, DataTAB member

Data Use Applications made to INSIGHT as of October 2022

 

Several multi-sector research organisations have made applications for INSIGHT datasets. The infographic below shows the breakdown of Data Use Applications by sector.

Data use applications by sector: NHS=2, Acadmia=3, Policy=0, Charites=1, SMEs=2, Tech=1, Pharma=3

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:

  1. An initial screening to ensure the research adheres to the ‘five safes’ (find out more on the About your data page) 

  2. An ethical evaluation of the purpose, value, and benefit of the research

  3. 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:

  1. Is there a clear clinical outcome, social care or public health outcome?

  2. Is there a clear clinical outcome, social care or public health outcome?

  3. If there are risks requiring mitigation, do we believe that the risk mitigation process(es) is realistic and sufficient?

  4. 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)?        

  5. Does the project outcome lead to value generation?

  6. Will the proposed outcome disadvantage any group or individual?
     

“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