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Data Trust Advisory Board

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

On this page:

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 and providing recommendations on individual applications to access data through INSIGHT.

  • Developing and regularly reviewing its own criteria to assess these applications.

  • 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.

DataTAB criteria for assessing applications

Anyone who request data through INSIGHT will have to show in t, the DataTAB will ensure that all the following questions have been answered:

  1. Is there a clear audit trail of how the data is being used and published?

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

  3. Does the proposed application pose a significant risk to individuals’ privacy?

  4. Will data obtained through INSIGHT be linked to other datasets? If so, has the applicant considered the risks and offered a mitigation process?

  5. Do we believe that the risk mitigation process(es) are realistic and sufficient?

  6. Has the applicant taken into account public/ patients’ view when designing the project proposal? Has the applicant consulted public/ patients in the formulation of their research question/ project proposal?

  7. Does the project outcome strike a good balance between public good, scientific discovery, value generation?

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

 
 

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


Jess Morley, DataTAB member

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. It represents a broad range of opinions, experiences and perspectives.

The current members of the DataTAB are listed here, with their extended biographies below.
 

 
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Richard Baker

Member

Richard Baker is Policy Manager for Royal Blind and Scottish War Blinded.

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Prof Alastair Denniston

INSIGHT representative

Alastair Denniston is a consultant ophthalmologist at University Hospitals Birmingham and Director of INSIGHT.

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Dr Wen Hwa Lee

Chair

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

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Yewande Omoniyi

Public member

Yewande works as a medical writer for a medical communications agency.

Read full bio

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Angus Patrick

Patient member

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

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Dr Angela Coulter

Member

Angela Coulter chairs the Public Advisory Board of HDR UK.

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Dr Neil Ebeneezer

Member

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

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Jess Morley

Member

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

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Julie Parker

Patient Member

Julie Parker is a recently retired Chartered Loss Adjuster.

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Nisha Tailor

Member

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

Read full bio

Further information​ about the INSIGHT DataTAB

 

The DataTAB is currently developing the criteria it will use to assess applications to access data through INSIGHT. Once agreed, these criteria will be published here.

This page will also be updated with the dates of upcoming DataTAB meetings where applications will be assessed. The minutes from those meetings will also be added here.
 

The Open Data Institute is supporting the setup of the INSIGHT DataTAB. More information about the process can be found in this series of blog posts.

 

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Member biographies

 
 

Richard Baker

  • Royal Blind and Scottish War Blinded

  • Ex-member of the Scottish Parliament

  • Policy

  • Charity

Richard Baker is Policy Manager for Royal Blind and Scottish War Blinded. His first role in the third sector was as Scottish Press Officer for Help the Aged, joining the charity in 2000.

In 2003 he was elected to the Scottish Parliament as an MSP for North East Scotland, and served in the Shadow Cabinet for Scottish Labour in a number of roles. He stood down from Holyrood in 2015 to return to the third sector as Team Leader for Age Scotland’s Early Stage Dementia Project. In 2016 he took over the role of Policy and Communications Manager for Age Scotland, and joined Royal Blind and Scottish War Blinded in November 2017 to establish a Policy and Research function for the charities as their first Policy Manager.

 

Angela Coulter

  • HDR UK

  • National Institute for Health and Care Excellence (NICE)

  • Health services research

  • Social sciences

  • Policy

Angela Coulter chairs the Public Advisory Board of HDR UK. She is a UK-based health policy analyst and researcher, with special interests in patient and public involvement. 

A social scientist by training, she has higher degrees in health services research from King’s College London and the University of Oxford. Now freelance, her previous roles included Chief Executive of Picker Institute Europe, Director of Policy and Development at the King’s Fund, Director of the Health Services Research Unit at the University of Oxford, and Non-Executive Director of the National Institute for Health and Care Excellence (NICE). She is strongly committed to increasing patient and public understanding of, and involvement in health data research.

 

Professor Alastair Denniston

  • Clinician

  • Ophthalmologist, University Hospitals Birmingham NHS Foundation Trust

  • HDR UK

  • INSIGHT

Alastair Denniston is a consultant ophthalmologist at University Hospitals Birmingham NHS Foundation Trust, leading research into the use of health data and artificial intelligence to improve patient care in the ‘real world’. He is Director of INSIGHT, the HDRUK Health Data Research Hub for Eye Health, which is focused on eye disease and its application to wider health, including diabetes and dementia.

Alastair has particular interest in how we can ensure that the innovation within the broad field of ‘artificial intelligence’ is translated efficiently but safely to benefit patients. This includes improving the reporting standards of trials (CONSORT-AI and SPIRIT-AI), exploring the regulatory framework for AI in healthcare, and working with NHS-X, HDRUK and other organisations to support the best of these innovations right through the implementation pathway.

 

Neil Ebeneezer

  • Research

  • Policy

  • Ophthalmology

  • Medicines & Healthcare products Regulatory Agency (MHRA)

  • Dept of Health (DH)

  • Dept for International Development (DfID)

  • International Medical Device Regulators Forum (IMDRF)

  • Medical Devices Regulation (MDR)

  • Department for Transport

Dr Neil Ebenezer joined the Department for International Trade as a Medical Technologist Specialist last year to develop and implement the global strategy for medical technologies across inward investment and exports.

Neil has a broad scientific knowledge with a degree in Biotechnology from Dublin City University. He initially worked on plant biotechnology before obtaining a PhD from the Institute of Ophthalmology (UCL), working there for over 13 years on the genetics of ocular diseases. Neil subsequently held various posts within the civil service, including; the Department of Health where he contributed to Blood Safety and Genetics policy; was the Head of New and Emerging Technologies at the Medicines & Healthcare Products Regulatory Agency and the Head of Science and Innovation at the Department of Transport. More recently, Neil was the Director of Research, Policy and Innovation at the charity Fight for Sight. He is a Fellow of the Royal Society of Medicine and a member of the Institution of Engineering and Technology.

 

Dr Wen Hwa Lee

  • Chair

  • Charity AAAMD

  • Drug discovery

  • Research

  • Science policy

Dr Wen Hwa Lee is presently the CEO and Chief Scientist at Action Against Age-Related Macular Degeneration (AAAMD), a research charity focused on tackling the leading cause of legal blindness in the developed world at its earliest stages with maximum affordability and accessibility. He is also a co-director of Oxford Martin School’s Affordable Medicines Programme.

Trained in genetics and molecular/structural biology, Dr Lee is experienced in setting up partnerships and alliances with multiple stakeholders to accelerate discoveries for drug discovery. He has designed and implemented several strategies in two of the largest and most successful international public-private partnerships for drug discovery – the Structural Genomics Consortium (SGC) and the European Lead Factory. Alongside his scientific endeavours, Dr Lee also advised high-level government representatives from different countries and charitable institutions on policy and strategy to integrate scientific, societal, and economic impact.

 

Jess Morley

  • Research

  • Ethics

  • Data use

  • Research

  • Policy

Jess Morley is a graduate researcher at the Oxford Internet Institute's Digital Ethics Lab, supervised by Professor Luciano Floridi, where her research focuses on 'designing an algorithmically enhanced NHS.'

Jess is also policy lead at the University of Oxford's DataLab, which is responsible for OpenSAFELY and OpenPrescribing. She is passionate about overcoming the technical, cultural, regulatory and social barriers to better responsible data use in the NHS. 

 

Yewande Omoniyi

  • Scientific Communications

  • Charity

  • Journalism

  • Biomedicine

Yewande Omoniyi has held a range of roles since completing her Biomedical Science degree in 2013.

She began working as a technical assistant for a pharmaceutical company upon completion of her degree and later as a research technician for a clinical research organisation. She currently works for a medical communications agency, where she is a medical writer.

 

Julie Parker

  • Insurance Analyst (retired)

  • Patient

Julie Parker is a recently retired Chartered Loss Adjuster, dealing with propriety insurance claims since the late 1970’s. She has sat on several panels over the years where she volunteered to put her insurance background to use. 

She has volunteered in mentoring insurance students, working for the insurance and loss adjusting institutes and more recently is an active member of the Macular Society. Julie has two further passions: Formula 1 and handcrafts.

Angus Patrick

  • IT/Tech consultant

  • Patient

  • PPIE

Angus Patrick is an experienced IT Consultant currently working for a small IT consultancy, Cadence Innova, based in London. He is passionate about enabling people to use technology to work smarter and improve their quality of life. 

He has a genetic eye disease, closely related to Stargardts, and has been involved with UCL and Moorfields Hospital on the MyEyeSite website project to help patients with inherited genetic eye disorders access and share their clinical data.

He has enjoyed acting in amateur dramatics with a high point as the lead in a West End Show for a TV documentary, yoga, movies, TV, cooking, and stimulating conversation, though not necessarily all at the same time.
 

Nisha Tailor

  • AMRC

  • Public Affairs

  • Industry

  • Health Research Authority (HRA)

  • Politics

  • Public Policy and Management

Nisha Tailor is Director of Policy and Public Affairs at the Association of Medical Research Charities (AMRC), the national membership body for over 150 medical research charities. She leads on AMRC's policy priorities to ensure the best possible environment for health and medical research charities. Nisha has over 15 years experience in healthcare policy and public affairs. During her career she has worked in the policy team at the Labour Party, in Parliament, for two policy consultancies, and in government affairs for Novartis Pharmaceuticals.

She was a member of the Health Research Authority’s Research Transparency Strategy Group and is on NHS England’s Accelerated Access Collaborative’s Steering Group. She was formerly a trustee of WAND UK, deputy chair of Alexandra School and a mentee on the Fabian Women’s Network mentoring programme. 
 

 
 
 
 
 
 
 
 
 
 

“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

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