We recognise and value the role of patient data, both in underpinning and leading to improvements in research and care.
We have led or been part of a number of activities to help us better understand people's attitudes to sharing their data for research and other purposes.
Information about why patient data matters is also available on the NHS website.
Patient data saves lives: The bigger picture
Produced by Understanding Patient Data
Other animations are available at Understanding Patient Data, following the experience of patients with cancer, a heart attack, diabetes, dementia and asthma, to show how data is used to improve care and the safeguards in place to protect confidentiality.
Data citation for our researchers
We ask researchers to recognise that if you use patient data, acknowledge it by incorporating the data citation below, developed by use MY data, in publications and stories that would not have been possible without access to this data.
Twitter users can also use #datasaveslives.
Where more space is available, the data citation can be extended to explain the role of patient data. For example:
“This work uses data provided by patients and collected by the NHS as part of their care and support. Using patient data is vital to improve health and care for everyone. There is huge potential to make better use of information from people’s patient records, to understand more about disease, develop new treatments, monitor safety, and plan NHS services. Patient data should be kept safe and secure, to protect everyone’s privacy, and it’s important that there are safeguards to make sure that it is stored and used responsibly. Everyone should be able to find out about how patient data is used.”
We are collaborating with research funders, healthcare professionals, data guardians, patient representatives and others as part of Understanding Patient Data to safeguard its custody and patient confidentiality.
In line with the principles stated at Understanding Patient Data, we support practices that:
- Anonymise data wherever possible
- Grant access to datasets only after an assessment by an independent review committee that the reason for using the data is appropriate
- Provide only the minimum amount of data necessary to answer a research question
- Store data securely
- Require a legal contract to be signed before data can be transferred
- Enable patients and the public to opt-out (see below).
National data opt-out programme
Patients and the public who decide they do not want their confidential patient information used for planning and research purposes can indicate their choice through the national data opt-out programme.
Non-digital alternatives are provided for anyone who can't or doesn’t want to use an online system. The process is secure and accessible and individuals can change their mind anytime.
National data opt-out is available from 25 May 2018 and sits alongside the new data protection legislation.
All health and care organisations will be required to uphold patient and public choices by March 2020.