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

"Data improves services and develops new treatments; data adds to knowledge and understanding; data saves lives."

Patient advocate, use MY data

About us

Our history

use MY data began at the 2015 Cancer Outcomes Conference.  At a session organised by the National Cancer Intelligence Network and Cancer Research UK, patients met to discuss creating a patient movement with the aim of building confidence in the use of patient data for analysis and research and therefore improving care & outcomes. 

A large part of achieving this would be to give patients a much better understanding of the uses of their data, so that they could play a more informed role in the uses of their data.

use MY data has developed through a range of activities to fully inform patients about the processes, risks, usage and benefits related the use of their data, so that they can make a fully informed decision about such things, and act as expert advocates with other patients who may have questions about their data.

The movement was originally called Donate Your Data.  Subsequently, the name was changed to use MY data at the request of patient members, who felt that this was more fitting

Who we are

Members
Members are patient advocates who believe that their patient data should be used to improve outcomes for future patients.

The majority of members are cancer patient advocates.  Membership is open to all patients and there are a small number of members with illnesses other than cancer.

Associate members
As well as the patients advocates who comprise the use MY data group there is a circulation list for those interested in the work and development of the group - associates of use MY data. This ensures that all interested parties are kept up to date and have the opportunity to input into the movement.

Associate members of use MY data comprise charity workers, academics, researchers, and public sector workers

Coordinating team

A small coordinating team, comprising a mixture of members and associate members helps to develop and steer the movement.