NHS health professionals collect and use patient data every day. This helps you get the right care at the right time by allowing doctors, nurses and other healthcare professionals to find, understand and treat conditions earlier.

Every x-ray, blood test result or GP appointment is logged in health records, along with personal details such as age, ethnicity and where you live. This secured information, which is only accessed for specific reasons, supports decision making at every step of your patient journey.

Patient data in research

Researchers also rely on NHS patient data when completing clinical trials and studies to identify potential new treatments or procedures, or to investigate their safety and efficacy (does the treatment work).

Previously, accessing NHS data for research has been costly and time-consuming, delaying the development and introduction of new treatments to save lives.

The national secure data environment (SDE) network, including the West Midlands Secure Data Environment (West Midlands SDE), is designed to make this process easier while maintaining the highest data protection standards.

Our guiding framework

• Five Safes Framework

  The West Midlands SDE will align its processes and procedures with the Five Safes framework, which is outlined here.

• Safe Data

  Data for research projects has personal identifying information removed to protect people’s privacy and confidentiality.

• Safe Projects

  Only approved projects with clear public benefits will be allowed to use data through the West Midlands SDE.

• Safe People

  Only researchers who are accredited, authorised and trained will be able to use the data.

• Safe Settings

  Data can only be used inside the secure environment.

• Safe Outputs

  Researchers’ completed work will be checked to ensure no-one can be identified.

Planning health and care services

Health and care service planners will be able to use the SDE to learn if services are still right for people living in our local communities. Having that understanding will show them what might need to change, and how. We’ll see new ways of working that will be better for our care.

How is data protected?

NHS and care organisations are committed to keeping people’s information safe and being transparent on how it is used.

Researchers can only use the West Midlands Secure Data Environment once they have proven their proposal is an appropriate and ethical use of data to improve patient outcomes. Patients are involved in this approval process for the West Midlands Secure Data Environment, through a Patient and Public Advisory Group (see our get involved page) and Data Trust Committee (DTC).

Once approved, access and use of the data is carefully managed by the NHS throughout, following the Five Safes framework outlined above.

Data requests

You can access data held about you through subject access or freedom of information requests.

You can make these requests by:

• letter
• email
• verbally asking (for subject access requests)

If you would like to make a request about your data, then please email us at: WMSDE@uhb.nhs.uk.

The national Data Saves Lives strategy outlines how, as a key priority, people will be given easier access to data kept about them.

Opting out

We need researchers to keep trying to find new, life-saving medicines and treatments, especially for our biggest health problems such as cancer and dementia.

We also need a better understanding of the health and care needs of people living in our region so we can support them to live healthier, longer lives by transforming the way we work.

What we can learn by analysing people’s health and care data is the key to making all this possible.

If you are happy for your health and care information to be used for research and care planning, you do not need to do anything.

However, it is entirely your decision. If you would like to opt out, you can find out how on our Local Data Opt-Out page and our National Data Opt-Out page.