The only independent movement of patients, relatives and carers in the UK focused on the use of patient data to save lives and improve outcomes Find out more and join us

  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

We have developed a set of Position Statements on a range of issues related to patient data

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.

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

Palantir Technologies have been contracted to provide new NHS software.

Read our response 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

Read Richard’s report here.

use MY data has been invited to join NHS England's Research Advisory Group

Read more here

Upcoming Events

“Following the high calibre applications submitted for the Transparency Standards Funding call announced in September 2023, HDR UK will be hosting an Alliance Transparency Showcase on 22nd May 2024 1.30pm – 5pm (drinks and canapes will be served from 4pm), to share and celebrate the outputs and impact of all 19 funded projects from across the UK”

Wed, 22 May 2024 13:30 - 17:00

Tickets available here

Members of the use MY data Secretariat will be attending.

Next steps for patient records in the NHS and use of patient data in England

Westminster Health Forum, Wednesday, 22 May, 2024, online

Executive Group Member, John Marsh, has been confirmed as a panellist at this event 

"It will be an opportunity for stakeholders and policymakers to discuss priorities for the rollout of the Federated Data Platform, introduced by NHS England last year aiming to support health and care organisations utilise data and work together to understand patterns, solve problems and plan services for their local population."

Find the agenda here

Tickets: £260 plus VAT. Information about concessionary tickets can be found on the booking page.

To find out more and book

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.

Contact us


"the only independent patient movement in the UK focused on patient data"
use MY data is registered as a not for profit company limited by guarantee in England and Wales (14425977)

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