Patient data underpins and leads to improvements in research and care.
The National Institute for Health Research (NIHR) has recently shared a resource surrounding the use of patient data in clinical research. The page contains a number of useful links to guidance such as the NHS pages on why patients’ data matters and also the Understanding Patient Data resource, which outlines a set of key principles that should be followed in using patient data for research purposes.
It’s important that if a researcher uses patient data, that they acknowledge it by using the following citation –
“This work uses data provided by patients and collected by the NHS as part of their care and support”
The above has been developed by use MY data, a movement of patients, carers and relatives, in place to ensure that the patient data used is protected by the appropriate safeguards, and is treated with the respect and confidentiality it deserves.
National data opt-out programme
The page likewise signposts the above programme which allows patients and the public to opt-out of their confidential patient information being used for planning and research purposes.
All health and care organisation will uphold these choices by March 2020.