A movement for cancer patients. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.

Patient data citation

Proposal

use MY data proposes including a citation on all publications using cancer data, to state that the data used within the publication comes from patients. The citation would be a condition of using patient data. The citation would acknowledge the patient contribution and track how the data has been used

Consultation

The use MY data website hosted a consultation to choose a citation. Five options were suggested and the most popular choice was:

This work uses data provided by patients and collected by the NHS as part of their care and support.

Next Steps

Write to organisations that use patient data and request that the citation is used:

Organisation

PHE Office for Data Release

UK and Ireland Association of Cancer Registries

The Farr Institute of Health Informatics Research

Date written to

May 2016

May 2016

August 2016

Response

Awaited

To be discussed at next Executive meeting

Awaited