Our mission

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.


Our Impact

Recognising the patient contribution

Read about the development and implementation of our Patient Data Citation

Education and information

We host regular events examining patient data topics, as requested by our Members. 

We update our Membership on a weekly basis, with a recent patient data items and engagement opportunities

Listening and engagement

Our unique status as a patient-led movement has enabled us to cut across the ‘worry spectrum’ and bring different views together

The National Data Opt-out: Getting information to patients

A use MY data survey across Primary Care

Helping patients understand their data choices

The National Data Opt-out and what it means for cancer patients

Stimulating national debate

‘What-if’ paper on patients’ rights and responsibilities

Campaighing and influencing

Joint campaign on low use of tissue samples

Specialist patient input to national patient data work

use MY data members provide expert input into a range of activities & bodies

Coordinating a patient voice on consultations and policy

Uniquely, as a patient movement, we have coordinated responses to several national consultations, directly using the words of our members.  Read more here.


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