use MY data is unique
We are the only independent UK movement of patients, relatives and carers focussed on the use of patient data to save lives and improve outcomes.
We are...
a patient
movement
a trusted
voice
not for
profit
UK wide
independent
Latest news and events
National Patient Data Day
Championing patient voices at NPaDD 2025...
In the news...
Read about use MY data in the FT...
Health Data Research Service (HDRS)
use MY data’s position on the HDRS
Newsletter
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Our work
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We bring the patient voice to discussions about patient data
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We educate and campaign on a range of issues around using patient data
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We provide a safe space for informed discussions of health innovations or challenges
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We act as critical friends to organisations that hold patient data.
We don’t
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Hold any patient data
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Endorse specific organisations
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Stray outside the patient data field
What we do
We promote the benefits of using patient data to save lives and improve outcomes. We work to address concerns about how our data is used through education, information and dialogue.
Campaigning & influencing
Our influence extends across the patient data sphere. Led entirely by patients, we have an impressive record of influencing health data decisions. Our Members collaborate directly with researchers in charities, academic groups, and commercial data organisations, in formal advisory and executive roles, to support the use of patient data. Please see the Position Statements link below for further details.
Education
For patients and the public, we help you to understand your data choices and unpick the technical jargon that can leave you feeling excluded from data discussions. We illuminate the patient perspective for clinicians, researchers and policy makers. Our Education Sessions are a two-way conversation in terms of learning - for our Members and for our guest speakers. For Members representing use MY data in public forums or on advisory bodies we provide expert advice and training.
Member voices
We bring patient voices direct to discussions about patient data and to key national consultations and policy decisions. Our Members bring their perspective and experience to conference panels, workshops, study groups, the national and specialist press and to the blogs on this website.
For Researchers
We can advise on grant proposals; provide feedback on design and implementation of patient data policy and initiatives; offer a safe space to test out your research proposals or showcase your work with knowledgeable, well-informed patients; find the right people for your PPIE projects, and supply expert speakers and panellists.
Benefits of Membership
Make your voice heard. We provide the tools and resources you need to be an active and informed participant in patient data debates. We offer unrivalled knowledge and support on patient data topics, exclusive access to our online education sessions, opportunities for dialogue with researchers; answers to your questions on any patient data topic and routes into Patient and Public Involvement and Engagement (PPIE). Join us today!