What is Health Data?
Health data is the information that doctors, nurses and health and care professionals collect about you when you visit a hospital, GP or other healthcare provider. It allows them to give you the best possible medical care. Your health data can also be used for service evaluation and quality of improvement (to assess the service you received) and Research. Research allows us to develop things like new treatments, new devices to assist with your care and new ways to deliver services you use.
How Do We Collect Your Data?
Data is collected whenever you use a health care service for example; your medical history, clinical images like X-rays and scans, Diagnosis, Treatments and any tests you have had like blood tests. This data is saved alongside personal details such as your age, ethnicity and where you live within your health records.
What do we use your data for & why is it important?
Health data can be used to plan and improve health services, understand conditions, and help diagnose diseases earlier. The millions of patient health records held by the NHS have enormous potential for research and can help develop new treatments and improve patient care.
For health data research to improve healthcare for all patients, the data needs to reflect us all – people from different ethnicities, backgrounds and with different health problems. This is why it’s important that everyone’s health data is available to use for research. However, individuals can exercise their right to opt out. If an individual chooses to opt out, this means that their data will not made available for research purposes.
To find out more on what happens to health data please look at the guide below created by Understanding Patient Data (UPD), a hosted organisation of the NHS Confederation who aim to make the way patient data is used more visible, understandable, and trustworthy, for patients, the public and health professionals.
How Is Your Data Protected?
Data safety is vital to the work that we do and there are strict controls on how researchers can access health data information. For access to health data to be granted, researchers need to demonstrate that their proposal is an appropriate and ethical use of the data and that it is intended to deliver clear public benefits.
We adhere to the Five Safes framework which is best practice in data protection.
Safe Data
The data for research projects is de-personalised to protect the privacy of patients
Safe Projects
Data will only be provided for projects with ethical approval and a clear public benefit by the data controller (UHB)
Safe People
Only trained researchers and specially accredited users are authorised to use the data safely
Safe Settings
Data is accessed within a secure environment that prevents unauthorised access and use
Safe Outputs
The outputs (Publication or findings) are screened and approved to ensure no data is re-identifiable
How do I opt out of my data being used?
The National Data Opt-out policy was introduced on 25 May 2018, it enables patients to opt out of their confidential patient information being used for research and planning.
Patients can view or change their national data opt-out choice at any time. Data on patients who have opted out is removed prior to data being utilised for research purposes.
To find out more
How can I get Involved?
We are committed to meaningful Citizen Engagement and involvement in the processes by which data use requests are reviewed and access to data is agreed.
We are currently growing our Patient and Public Involvement and Engagement groups (PPIE) to support us in this work.
Here are examples of how members of the public might get involved in research:
Be part of the future of research
- Become a member of a Data Trust committee, project advisory or steering group
- Be part of Citizen engagement events
- Be involved in reviewing and have your input into data applications
- Become involved in training around PPIE and Health Research Data
Improve the quality and relevance of research
- Help identify Research priorities
- Make an impact on what research takes place here
- Be involved in the development of research projects, patient information leaflets or other research materials
To find out more about UK wide PPIE groups surrounding patient data use MY data – data citation
To find out more about PATHWAY: UHB Health Data Research Hub PPIE groups and becoming a Members of a Data trust committee. Please email R&DPathway@uhb.nhs.uk or use the link below to fill out our application form
To find out more and get involved in PIONEER: The Health Data Research Hub for Acute Care and our advisory group called the PIONEER Data Trust Committee
To find out more and get involved in INSIGHT: The Health Data Research Hub for Eye Health. Our PPIE group and our Data Trust Advisory Board (DataTAB)