Recognising the role of patient data in NIHR
The NIHR recognises and values the role of patient data, both in underpinning and leading to improvements in research and care.
Examples of types of patient data used in research include:
- GP records
- Clinical audits, for example the National Diabetes Audit
- Disease registers, such as the National Cancer Registration and Analysis Service
- Hospital Episode Statistics
- Diagnostic imaging datasets
- Prescribing databases
- Patient surveys, for example Patient Reported Outcome Measures (PROMs)
- Information collected during clinical trials and cohort studies
- Data in large patient cohorts, such as the NIHR BioResource and the UK Biobank
Researchers who use patient data should acknowledge it by incorporating a data citation, developed by use MY data, in publications and stories that would not have been possible without access to this data. This expectation also extends to press releases on such research. Visit the NIHR website for more information about the commitment to valuing the role of patient data.
Please use the following patient data citation after the NIHR boilerplate in your press releases:
This work uses data provided by patients and collected by the NHS as part of their care and support and would not have been possible without access to this data. The NIHR recognises and values the role of patient data, securely accessed and stored, both in underpinning and leading to improvements in research and care.
Please use this citation in all press releases, unless you feel that the research does not use patient data in any form.