What we do
| We bring the patient voice to discussions about patient data | |
| We campaign and influence on a range of issues around using patient data | |
| We have a clear set of data-principles which we encourage others to follow | |
| We act as critical friends to organisations which hold patient data |
What we don't do
| We do not hold patient data | |
| We do not endorse specific organisations | |
| We do not stray outside the patient data field |
Registration is now OPEN for the inaugural use MY data National Patient Data Day Conference (#NPaDD2025) in Leeds on 24 June 2025 and the launch of the first National Patient Data Awareness Day.
We have developed a set of Position Statements on a range of issues related to patient data
See the breakdown of our Membership by age, disease area, geography, ethnicity
We run a series of monthly educational sessions for our Members about data-related topics. Watch them again here.
For a small organisation we punch well above our weight. Read about the areas of work where we have made an impact
Transparency should underpin everything and is essential if the trust and support of patients and the public is to be maintained and developed. Transparency means operating in such a way that it is easy for others to see what actions are performed. In a nutshell – Say what you do, do what you say.
Patient data news
Our Executive Group Chair Richard Stephens writes about the Cancer Research UK upSMART conference
Palantir Technologies have been contracted to provide new NHS software.
Read our response here.
The use MY data Secretariat coordinates the production of responses to consultations, letters to stakeholders and written summaries of workshops and webinars.
Find out more here.
The latest news articles, publications and reports about patient data
In November last year, use MY data Executive Group Chair, Richard Stephens, co-hosted a roundtable at the Elixir Bioinformatics Industry Forum.
use MY data has been invited to join NHS England's Research Advisory Group
Read more here
Mission Statement
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.
