The Patient Data Citation was created by Members of use MY data, as a way to acknowledge the contribution of patients to research and analysis using patient data.
It has been widely adopted by UK data and research organisations and recommended for adoption by the major research funders in the UK.
use MY data encourages everyone who uses patient data to adopt and promote the citation.
In 2015, one of the first proposals by Members of the newly formed use MY data was the inclusion of a citation on all publications using patient data, to state that the data used within the publications comes from patients. The citation would be a recognition of some of the benefits of using patient data and an acknowledgement of the patient contribution, as well as highlighting how their data has been used.
As part of the development of the citation, the proposal was taken to a workshop with patients and cancer researchers at the National Cancer Research Institute’s (NCRI) Cancer Conference. It was then discussed as a principle, at a workshop at Britain Against Cancer, the annual conference of the All Party Parliamentary Group on Cancer.
use MY data hosted a public consultation in 2016, via our website, to choose a citation from a list of five options that Members had suggested.
After the voting period, the popular choice was:
This work uses data provided by patients and collected by the NHS as part of their care and support.
Once the citation was chosen, use MY data began contacting organisations that use patient data to request that they use the citation, reflecting the wishes of our Members. Researchers began to use it and awareness of it also spread by word of mouth. In June 2017, large numbers of presentations and analyses at the Public Health England (PHE) Cancer Data and Outcomes Conference included the data citation for a large audience for the first time, with very positive feedback.
Understanding Patient Data adopted the citation in 2017 and were instrumental in promoting the message. They have encouraged the use of the citation on all work underpinned by patient data, including publications, event materials and press releases.
Some of the organisations that use the citation:
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Contact us
email: contact@usemydata.org.uk
"the only independent patient movement in the UK focused on patient data"
use MY data is registered as a not for profit company limited by guarantee in England and Wales (14425977)
