How we use data for better research

The Royal Devon is committed to ensuring our patients benefit from world-leading clinical research. We have an excellent reputation for using clinical research to support the discovery of new treatments and therapies, advancing health innovation and technology to improve the care we offer our communities.

Our Trust is uniquely positioned to serve some of England’s most rural populations, with a vast reach across coastal villages and market towns. Research helps us and our research partners better understand the specific health needs of our communities, enabling us to address unique health challenges and reduce health inequalities in these areas.

We work closely with universities, life science organisations, and healthcare partners to maximise our research potential. A list of our partners and a description of how we work with them is provided below.

Through this collaboration, we not only increase the number of research studies we can offer but also gain access to additional funding opportunities, creating more chances for patients to participate in life-changing clinical trials.

What is patient data and why is it helpful for research?

Whenever you use an NHS service, your electronic health records are updated. These records contain important clinical data about your health and wellbeing and describe the care that you have received. When the data from lots of patients’ health records is added together, this information - known as ‘real world data’, can be critical for maximising research opportunities from medical research.

For example, to improve cancer diagnosis and care, anonymised data from oncology patients could be used to improve new and better diagnosis and treatment.

Other NHS Trusts have had great success from working with partner organisations to contribute to research work in this way. For example, an Oxford University Hospital data partnership led to the development of an app for women with diabetes in pregnancy (GDm-Health) that has already been used by 44 Trusts, preventing over 1300 C-sections, and over 500 pre-term births.

How does the Royal Devon assess and approve requests for real world data?

The Royal Devon follows a process for all data requests, which must meet strict criteria.

If we agree to let our partner access the data, we follow a set of controlled protocols to compile the requested anonymised datasets. This strict governance safeguards our patients’ anonymity.

What processes are in place to protect patient data?

Data is anonymised by removing any information which could be used to identify a patient including information like date of birth, full address, and NHS number. We take extra care with information about rare diseases and conditions. If fewer than five people have a particular condition, we do not include specific details to ensure no one’s identity can be traced

This process also involves ‘jittering’ details. This means making small changes to data to protect privacy while still keeping the data useful for analysis. We also combine the anonymised data so that small data-sets aren’t released, further reducing the risk of any re-identification.

Only a limited number of essential Trust staff are authorised to access identifiable information at any time, and this is strictly controlled.

Can I choose to opt-out?

It is important for our patients to have a choice in whether your data is used for research purposes. If you do not wish to have your data used in this way, you can choose to opt-out. Opting out does not affect the direct care you receive, and you can update your choices at any time.

The Royal Devon respects opt-outs that have been requested via the National Data Opt-Out (NDOO) service. This is a service that allows patients to opt out of their confidential patient information used for all research and planning purposes. If you have already completed a NDOO request, you will not have to make this again.

If you would like to specifically opt out of Royal Devon using your anonymised patient data for commerical research, there is more information and an opt out form available at https://redcap.link/rduh-opt-out. This is not necessary if you have opted out using the national system.

Patients also have rights which they can exercise under UK data protection law. More information about these is available in our privacy notice, available on the Information Governance fair collection privacy notice page.

Which organisations does the Royal Devon collaborate with to provide data for research?

Arcturis

The Royal Devon has a partnership with Arcturis, where insights from anonymised patient data are used to help doctors make more accurate diagnoses, select the most effective treatments, and improve patient care.