What is the Secure Data Environment Programme?
The Goldacre Review and the Data Saves Lives strategy recommended the introduction of Secure Data Environments as a more secure and efficient way to access health and care data for research and development. This approach is now reflected in NHS England policy, with access to NHS data expected to move exclusively to Secure Data Environments over the coming years
Why does TVS need a secure data environment?
SDEs provide a simplified and robust route for accessing data for research and development, reducing the burden on NHS organisations, including GP practices and NHS trusts. Agreed datasets are transferred from organisational IT systems into the Secure Data Environment specifically for research purposes. Access is granted only for approved projects and validated researchers from approved organisations, through the TVS SDE Services and data Access Review Committee (SARC).
Secure Data Environments (SDEs) deliver several important benefits, including:
- Patient privacy – SDEs apply robust techniques to remove or replace personal identifiers, ensuring that patient information remains confidential.
- Security – NHS data is hosted only within systems that can demonstrate high levels of protection, with strict controls over who can access the Secure Data Environment and for what purpose.
- Efficiency – Accessing health and care data for research can be a time‑consuming and complex process. SDEs enable data from multiple sources to be securely linked and prepared in a standardised way, allowing approved datasets to be reused more easily. This means researchers and analysts can access larger datasets more quickly, supporting faster NHS decision‑making and accelerating the discovery of new treatments.
Who is leading the TVS SDE Programme?
The TVS Secure Data Environment is led and hosted by Oxford University Hospitals NHS Foundation Trust (OUH) on behalf of NHS partners across the Thames Valley and Surrey. It is funded by NHS England’s Data for Research and Development Programme.
OUH is responsible for operating the SDE, hosting the infrastructure, and overseeing its day‑to‑day management, while governance and decision‑making are shared across the region through a formal programme structure that includes partner NHS organisations, clinicians, information governance experts, researchers, and patient and public representatives.
What is the TVS SDE to be used for?
The types of research projects the Secure Data Environment will use include:
- AI/algorithm development – testing, training and validation
- Clinical trial activities – feasibility, recruitment, efficacy through short and long term follow-up
- Real world studies – safety, effectiveness and cost effectiveness
- Translational research – academic discovery and implementation of discovery into practice
- Epidemiological studies – large cohorts for population health research
- Health systems research – evaluation of systems or processes, including operational and applied research
We plan to widen the scope of the use of data to enable to access for non-research, which includes service planning, evaluation and improvement
How does the TVS SDE relate to other research data services?
There are several health data research services which offer different capabilities to meet different research needs. The TVS SDE provides the researcher with the ability to directly access real-world NHS data which is linked across care settings such as hospital, GP and community care. The SDE includes access to imaging, detailed laboratory test and other data not available elsewhere to research users.
- CPRD: Provides access to nationally reported data and de-identified GP data. This is useful for many studies, however the data for settings such as hospital care is much more restricted t
- Open Safely: Provides researchers the ability to have their queries run by OpenSafely on data. The researcher doesn’t get to see the data. This is ideal in some circumstances but does not support many types of research.
- National SDE: Managed by NHS England and provides access to secondary care data only.
- RSC: A key source of information for UK Health Security Agency (UKHSA), supports monitoring of outbreaks, and conducts impactful, data-driven research.
Is the TVS SDE part of the Shared Care Record?
The TVS SDE is not part of the Shared Care Record. A Shared Care Record is a secure NHS system that brings together important information from a person’s health and care records so that professionals involved in their direct care can see the same up‑to‑date information, even if they work in different organisations.
The TVS SDE bring data together for research and planning, not for direct care.
We can receive data that GP Practices have contributed to the SCR, where we have explicit permission from the GP practice. This avoids the need for us to set up new, additional data flows with each practice.
Will industry be allowed to access the TVS SDE?
Yes, the Secure Data Environment can be accessed by a variety of researchers, including industry/commercial, NHS, academia, charities etc. All access requests will be subject to user and organisation validation in addition to a comprehensive project approval process. Our Services and data Access Review Committee (SARC) will assess applications on an equal basis. All applications will be treated the same, following the same governance and processes.
How have the public been involved?
At the heart of the Thames Valley and Surrey Secure Data Environment (SDE) is a strong commitment co-produce with patients and members of the public.
Public members are embedded within the programme’s governance structure and have played a key role in shaping the design and development the service and the way we review access requests. Our approach builds on learning from established regional engagement activity and focuses on working closely with local communities, including some seldom heard communities, to talk about how health and care data is used safely for research and planning.
Together with public members, we are developing clear principles to ensure transparency, trust and accountability in how data is accessed and used. This co‑design approach is a core part of the programme. Currently, X public members are recruited and embedded within the governance structure. They recognise the value of the data held within the Secure Data Environment and play a vital role in ensuring that health and care data is used appropriately, always prioritising the best interests of the local population.
Do the TVS SDE Committees and Board have patient representatives?
Every committee within then TVS SDE governance structure has at least one public member. The Services and data access review committee (SARC) has 50% public membership.
The public members recognise the value and quality of the data held in the Secure Data Environment and embrace their role to ensure that patient health and care data is used appropriately, prioritising the best interest of the local population.
Together they share a broad knowledge-base and lived-experiences across a range of topics and expertise and the current demographic makeup of the group is diverse with a good split of male and female members, including people with lived experiences of disability and other medical conditions, and from other ethnic backgrounds and equality groups.
How are patients notified about the TVS SDE?
Patient information posters and leaflets are displayed in each GP practice, as part of the requirements when GP practices sign up to share data with the TVS SDE. These materials signpost patients to the TVS Health and Care Data website, where they can read more about how their data is used.
Patients are also informed about their choices to opt out of data use for research, either via the national data opt‑out or a TVS programme‑specific regional opt‑out.
Both the website and patient-facing materials were co‑produced with the TVS “Understanding Our Data” Community of Practice, to ensure they are clear, accessible and trustworthy.
How do I share data with the TVS SDE?
Contact the programme team and we will send you the paperwork.