About us
Our Members come from all walks of life and from all parts of the UK. We all believe that our patient data needs to be used to save lives and improve outcomes. Use my data to help others and help me!
Our Vision
Every patient in the UK willingly giving their data to support medical research & their own care. We work for this through a strategy of positive engagement, bringing patient voices to discussions about patient data.
Our Mission
To be a Trusted Voice for patients and the public in all discussions and decisions about the use of our data for research and improving healthcare.
Our Aims
• Promote responsible, accountable use of patient data to improve health research and remove barriers which may prevent this. • Highlight the benefits of using patient data for our own health and the health of our communities. • Ensure patient data is USED to create and support an NHS that is better for all. • Advocate for robust & transparent safeguarding of our data. • Be a critical friend to organisations who collect, store, and use patient data to benefit society. • Educate patients to play an active and informed role in discussions and decisions about patient data.
Our approach
Our structure
We are Member-led. Our small Executive Group is drawn from our Members and supported by a Secretariat comprising our Head of Programmes & Engagement, Communications & Media Lead and our Data Adviser. Please see the three links below for further details of the Executive Group, How We Operate and Funding Details.
Our Origins
In 2015, a group of cancer patients became frustrated that an initiative to promote data use (care.data) was stymying cancer research. They began campaigning for patient involvement in all decisions about our health data and to champion the benefits of its use. Adopting the name use MY data to represent our focus on the USE of our data, we opened Membership to all disease areas. While care.data was short-lived, use MY data is still going strong.