use MY data is an independent UK movement that was set up in June 2015 by a number of patients, carers and relatives to address the slowdown in cancer research in the wake of the Care.data programme. Primarily, the group wanted to try and help the general public see that their data can be used in a safe and secure way which brings benefit to patients. Most importantly, the group recognised the need for this message to come from patients themselves. Quite quickly the focus of use MY data has broadened to cover all patient data, not just cancer, and the movement is now made up of Members (patients, relatives and carers) and Associate Members (clinicians, researchers, charities, researchers, public & commercial sector workers), supported by a small Secretariat. The mission statement below summarises the goals of the use MY data movement:
“use MY data is a movement of patients, carers and relatives
use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.
use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.
use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.”
use MY data encourage researchers to acknowledge where they use patient data by using the following data citation: “This work uses data provided by patients and collected by the NHS as part of their care and support”.