What Opportunities doe the TVS SDE bring to the region?
Secure Data Environments brings several opportunities to improve the health and wealth of our region. The Secure Data Environment covers both research and planning use cases which Thames Valley and Surrey can benefit from.
Research
The TVS SDE will enable us to carry out new research and development activities which is currently not possible, or very challenging. The ability to link datasets between primary and secondary care and between organisations for the purposes of research and development, will encourage collaborative working, unique project opportunities and answer important research questions.
These new opportunities will bring additional revenue to our region and participating organisations. For example, AI projects using datasets to improve diagnostics and workflow improvements –ultimately benefiting patient care.
The TVS SDE will not replace patient consented clinical trials and research projects.
Development
It can take many years for the benefits of research projects to materialise. A key opportunity the TVS SDE presents is near real-time, data driven decisions around service improvement and planning. As we move towards group models of hospital care, and move care into communities, we need to understand these pathways and make the right decisions about how care is provided.
Standardisation of data management
The Secure Data Environment is driving standardisation of data definitions, enabling and ensuring stakeholders are able to speak the same language.
Having a single platform, agreed data definitions, a single access process and a single set of information governance protocols will greatly increase the pace and scale under which we can carry out research and development projects.
What are the benefits to me as a GP and my practice?
For GPs, participating in the TVS SDE allows structured GP data (excluding free‑text notes) to be used for approved NHS research in a safe, legally robust way without adding workload or cost to practices.
Data flows reuse existing systems and patient confidentiality is protected through de‑identification and strict access controls.
Practices benefit from clear national approvals, shared governance with strong public involvement, centrally provided patient information materials, and the opportunity for GP data to contribute to research that improves patient care, services and outcomes across the NHS.
What are the benefits for my patients?
For patients, the TVS SDE means their health data is used securely within the NHS to support research that can improve diagnosis, treatments and services
Data is de‑identified, tightly controlled, and only used for approved projects. Approved researchers analyse the data in a secure NHS environment rather than the data being shared externally.
What are the risks to a practice?
Data Breach (rated Low).
The TVS SDE is operated within the Oxford University Hospitals data which meets relevant security standards including standards met for the Data Security Protection Toolkit (DSPT).
The TVS SDE is undergoing accreditation for the international security standard ISO 27001 and accreditation by DHSC.
Data flows from Trust to SDE use industry standard secure data transfer mechanisms.
Independent penetration tests have been conducted to ensure the design is secure,
Increased workload from patient enquiries (rated Low).
The TVS SDE website contains a thorough set of patient information which has been developed with the co-production group. The programme has transparent operating practices and will continue to publish key information on the website.
Practices will be provided with patient notification material to display on notice boards and on practice website. Patients are directed to the TVS SDE website and email address for any enquiries. We welcome input from practices to develop answers to questions that arise and ensure we have helpful information published on the website.
The programme will provide responses to practices to support individual queries,
Financial risk (rated Low).
Thames Valley ICB have agreed an extension of the indemnity provided against data breaches for the TVS Care Record by ICBs to the TVS SDE.
We are in discussions with Surrey heartlands ICB to confirm a similar level of indemnity
Risk of patient re‑identification
A data extract will be produced for each approved data request, using queries based upon the agreed data specification. These queries will be generated automatically: reducing the risk of human error and ensuring timely, efficient delivery of data.
Additional transformations are applied, automatically, to reduce the risk of inadvertent re-identification: fresh, programme-specific identifiers are generated, and dates and times are shifted.
Users are obliged through the access agreements to not attempt any re-identification of patients
Impact on patient trust (rated Medium).
The TVS Secure Data Environment (SDE) places strong emphasis on public engagement and co-production, both locally and nationally, in partnership with NHS England. This ensures that the design and implementation of the SDE are guided by meaningful public input.
To ensure responsible data use, the SDE applies the Five Safes framework, which is a recognised best practice for safeguarding data. The committee responsible for overseeing project approvals has significant public participation, with more than 30% of its membership made up of public representatives. This ensures that decisions about data use reflect community interests and concerns.
Transparency is a core principle: all approved projects are reported and published openly, allowing patients and the public to see how data is being used. In addition, every organisation and user accessing the SDE is validated to nationally agreed standards, upholding rigorous security and governance.
Patients have control over their data, with both the national NHS Opt-Out and a local TVS SDE Opt-Out available to all. For more details on how we work with the public, please see our TVS SDE coproduction approach and plan, as well as our most recent Coproduction workshop report.
Impact on existing GP research activity
The TVS SDE is non-exclusive. Practices are free to continue participating in other research activities as they do today, and to consider the TVS SDE as a route to enhance the research they conduct in future
Are practices indemnified from liability?
Thames Valley ICB confirms it will extend existing indemnity cover (currently in place for the TVS Care Record) to cover the TVS Secure Data Environment.
We are working with Surrey Heartlands ICB to confirm a similar arrangement.
This is intended to mitigate financial risk to practices, which is assessed as low in the programme risk assessment.
How will taking part in the programme impact GP practice staff time?
The governance and delegation structure for the Services and data Access Review Committee (SARC) means that GP practices do not need to review and assess individual data projects. The SARC has representation from two GPs.
We will share updates on projects that are applying to access GP Practice data in the TVS SDE, for your information.
What are the financial impacts for GP Practices?
TVS SDE can use existing data flows to the shared care record, so requires no new IT development, and has no set‑up fees or ongoing charges for practices. Patient information materials are provided centrally. The only cost is the time for practice staff to review the sign up documents. We are offering a one off payment of £500 per practice to reimburse for the time involved in the onboarding requirements.
Some GP practices currently receive service support costs for research activities such as identifying eligible patients, providing datasets, and inviting patients to participate in studies. These activities are coordinated by the NIHR Research Delivery Network, or directly by commercial organisations. Many GP practices also participate in the Clinical Practice Research Datalink (CPRD). These initiatives are separate from the work of the Secure Data Environment and will continue as before.
Importantly, participation in the TVS SDE is not expected to result in a decline in income for GP practices.
Do practices receive a fee for sharing data?
There is no direct “”data sharing fee”” because the transfer doesn’t impose extra IT burden on a practice. The TVS Secure Data Environment (SDE) uses a cost‑recovery plus value‑sharing model, in which costs are calculated in three components:
- Technical resources used by their project, mainly cloud storage, computing capacity, service management and administration.
- Cost of providing the data, including: Preparing and delivering data extracts; additional processing (for example, handling free text or derived data); ongoing updates or revisions to data specifications.
- Share in the value derived from data, this can take one of three forms: a revenue share from products or services developed using the data; an equity stake in the user organisation; an agreed upfront fee.
If the TVS SDE generates income above its operating costs, the surplus is distributed according to agreed priorities: investing in data and infrastructure, allocating a share across all NHS data-providing partners, and allocating a share to partners whose data directly supported value-generating projects.
Organisations providing data to the TVS SDE can choose to opt-out of this mechanism. Any funds remaining are re-invested in developing health data research capabilities.
Who should a GP refer an SDE patient query to?
For general queries we will have full information available on the TVS website, including contact details. We will respond to patient’s queries.
For specific queries on opting-out, the patients will be informed of the details of a central mailbox and telephone number through transparency and communications materials, such as privacy notices, posters, leaflets etc.
Will our patients be contact be researchers or people who use the TVS SDE?
No, patient information is de-identified so patients can’t be re-identified and contacted.