How public contributors are influencing access to health data through the NHS Digital Trusted Research Environment Service for England
30 November 2021 | Author: Alice Dowden, Public Engagement and Involvement Officer
Involvement of patients and the public in data access processes, including access requests through Trusted Research Environments (TREs), is vital to ensuring the trust and support of those whose data is being used for life changing research. Find out how public contributors are involved in reviewing data access through the NHS TRE service for England.
NHS Digital, a member of the UK Health Data Research Alliance, provides approved researchers with access to their Trusted Research Environment (TRE) service for England. Through this TRE, researchers can access essential linked, de-identified health data to help them answer COVID-19 related questions.
Health Data Research UK (HDR UK) is committed to enabling the trustworthy use of health data for research and has championed the use of TREs to enable crucial research to support the COVID-19 response across all four nations. Involvement of patients and the public in data access processes is vital to ensure it has the trust and support of those whose data is being used for life changing research.
HDR UK has been working to improve patient and public involvement in data access processes, with the HDR UK Public Advisory Board recently producing a set of recommendations on building trust in data access through involvement in data access processes. These were supported by the Alliance and we recently ran a shared learning event to discuss successes and challenges in involving public contributors across Alliance organisations.
Read on to find out how patients and the public are involved in ensuring that public benefit is at the core of access to health data for research through the NHS Digital TRE service for England.
What is a Trusted Research Environment?
Trusted Research Environments (TREs), also known as ‘Data Safe Havens’, are highly secure computing environments that provide remote access to health data for approved researchers.
TREs are helping to make research safer, as by making health data available through a TRE means that people can be more confident that their personal health data is accessed securely and their privacy is protected. TREs provide approved researchers with a single location to access valuable datasets, with the data and analytical tools all in one place to enable efficient and cost-effective research. Providing data securely through TREs allows researchers to use analytical tools in their research, as well as supporting collaboration between researchers within the same research projects. This will enable deeper insights which will go on to improve healthcare and save lives.
What is the NHS Digital TRE?
NHS Digital’s TRE service for England provides approved researchers with access to essential linked, de-identified health data to answer COVID-19 related research questions in a highly secure environment.
A number of datasets are currently available via the TRE service and several others are in development, principally to support COVID-19 related research in the TRE including those made available through the Data and Connectivity National Core Study.
Researchers can only access datasets approved under their specific Data Sharing Agreement (DSA) project. They are then provided with their account details and instructions on how to access the secure platform within the TRE service. The secure platform puts virtual walls around data, which is covered by the DSA, to ensure that users can only access data for which they have been approved. All data is de-identified and so does not contain personal information such as names, addresses or NHS numbers.
How are patients and the public involved in reviewing data access applications?
The Independent Group Advising on the Release of Data (IGARD) is an advisory body to the NHS Digital Board. IGARD aims to improve transparency, accountability, quality, and consistency through robust independent scrutiny of access to NHS Digital data, as well as providing a voice for the public.
IGARD’s purpose is to scrutinise and advise NHS Digital on the appropriateness of applications for data access. This ensures that the use of patient data within research, academia, the public and private sector is done in a way that meets NHS Digital’s safeguards (such as utilising controlled environments to minimise the risk of disclosure) and, in all cases, evidences a benefit to health or social care.
IGARD is currently made up of seven members, who are all independent from NHS Digital and bring different skills and perspectives to the panel. Two members of the independent panel are public contributors, including Kirsty Irvine, Chair of IGARD. Kirsty has a background in law, as well as acting as chair for her local GP practice’s Patient Participation Group. Alongside her role as chair of IGARD she is a carer, a lay examiner for the Royal College of Obstetricians and Gynaecologists and an active volunteer for the Miscarriage Association.
What does IGARD look for in applications for data access?
When reviewing data access requests, IGARD uses a series of NHS Digital published ‘Standards’ to assess applications. These include measuring the expected benefits of researchers accessing this data, how sharing the data will benefit healthcare provision, adult social care or the promotion of the health, and how sharing this data is in the public interest. For example, what action is likely to happen as a result of this research, and how many patients are likely to benefit from it?
IGARD have an important part to play in ensuring accountability and transparency of data access from NHS Digital’s TRE. Click on the links below to learn about the impact they’ve had on TRE data access requests over the last year.
Ensuring clarity and transparency in COVID-19 vaccine research
Making research outputs public and championing patient and public involvement
Driving appropriate and safe data use for patient and public benefit
Kirsty Irvine, Chair of IGARD said:
During the pandemic we have seen the incredible impact that timely access to health data can have. However, now more than ever, we also need to ensure that data custodians, such as NHS Digital, continue to maintain the public’s trust and confidence – which is hard won and easily lost. I think the TRE model is a valuable tool for maintaining public trust as access is still subject to the usual stringent controls with the additional reassurance that the data does not have to “travel”.
To find out more about how to get involved with our work at HDR UK, please go to our Patient and Public Involvement and Engagement page.
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