Ask any use MY data member and they’ll tell you: “The only source of data is the patient.”  (Helen, use MY data Member)

A grassroots organisation run for and by its members, use MY data is the only independent movement of patients, relatives and carers in the UK focused on the responsible and accountable use of patient data to save lives and improve healthcare.

Our vision is for every patient in the UK willingly giving their data to support medical research for the benefit of all.

“[My] treatment [for breast cancer] … depended so much on the data of patients who went before me.” (Hilary, use MY data Member)

Why sharing our data matters

There is a lot of noise about the need to keep our personal data safe, and rightly so. But it is also important to recognise the benefits of sharing our medical data (with all the necessary safeguards in place), to transform patient care.

“We have to make sure that … data is protected and dealt with properly and confidentially, but … please give your data and make sure that it’s used well to help other people.” (John, use MY data Member)

During the pandemic data sharing was vital to understanding COVID-19 and develop a vaccine at speed. Patient data was used to build the Shielded Patient List to help people at high risk protect themselves from infection.

Patients are experts by experience, with an invaluable range of knowledge and perspectives, but all too often decision makers don’t hear our voices. Members (patients, relatives and carers from all disease areas) play an active role in discussions and decisions about patient data. A benefit of membership is access to education sessions on data topics. Our independence and expertise mean we are regularly consulted on patient data issues.


Transparency on the part of organisations or people who want to store or use our data is essential to develop and maintain the trust and support of patients. We work on the principle, “Say what you do, do what you say”.

Through our strategy of positive engagement, we strive to be a critical friend and sounding board, advocating for robust safeguarding of data.

Members have given a mandate for their data to be used but in ways that are transparent, ethical and publicly acknowledge the role of patients in the research process. The patient data citation was created by members to highlight the patient contribution to research. It has been widely adopted across the UK, alongside our transparency principles which have been embedded into a range of organisations including Understanding Patient Data and Health Data Research UK.

Our position statements set out issues that matter to members. For example, being able to see all our medical records to enable clinicians to make informed decisions with us about our treatment based on our complete medical history. Members care about their data being used to save lives and improve outcomes for others, in the same way that they have been helped by the data of previous generations.

Strength in numbers

“Having seen how my data is used that’s why I’m involved with use MY data, because I actually want my data to be used by more researchers…” (Andy, use MY data Member)

Our mission is to be the trusted, independent voice for patients and the public. We represent and amplify the patient voice and ensure that patients are included in all conversations about our data. Membership and associate membership of use MY data is free and we invite anyone who supports our aims to join us.

To find out more, email Alison Stone, Head of Programmes and Engagement: [email protected].