How we operate
Our legal status, structure, funding and terms of engagement.
Our legal status
use MY data is an independent movement of patients, relatives and carers. In October 2022 we established ourselves as a not for profit company limited by guarantee, allowing us to receive funding directly, to manage contracts and employ staff directly.
Core funding
Cancer Research UK has renewed funding for use MY data for four years from April 2026 to help us expand our work around awareness, trust and support for the use of patient data in research.
This funding supports our Secretariat team, honoraria/expenses for Members' activities and day to day running costs.
Core funding
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Official Supporter Programme
Join us in our mission
We're on a mission to expand use MY data’s work and reach. We remain the UK's only independent, not-for-profit patient-led movement focussed exclusively on the use of patient data to save lives and influence people.
Support use MY data and put patients at the heart of research.
The ever increasing pace of change in the world of patient data means our work has never been more important.
We have a unique role to play bringing the patient voice to discussions about patient data, educating and campaigning on a range of issues around the use of patient data, providing a safe space to discuss health innovations and challenges, and acting as critical friends to organisations that hold patient data. We want to grow our team so that we can do even more!
Let’s make patient data count for everybody – there’s strength in numbers!
Become an Official Supporter today!
Supporter news
We are delighted to announce that Eastern England SDE is the first organisation to join our Official Supporter Programme.
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Reports and Consultation responses
The use MY data Secretariat coordinates the production of responses to consultations, letters to stakeholders and written summaries of workshops and webinars on behalf of the Executive Group. The Group acts on behalf of use MY data’s Members – patients, relatives and carers who want patient data to be used for research. For consultations, the Secretariat would usually consult with all of our Members to seek their views and include all of these in our response - we believe there is strength in presenting a wide range of patient views about the use of patient data.