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 stance on Transparency


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.

Our guiding principles for transparency:

  • Accessible* – easy access to information
  • Understandable – the right language for the audience
  • Relevant – addresses audience concerns
  • Useable – in a form that meets the audience needs
  • Assessable* – is checkable/provides sufficient detail
  • Being as pro-active with ‘bad news’ as with ‘good news’
  • Being timely with communication

*What do we mean by:


  • Easily see what data/information is there
  • Meta-information i.e. the rules about what is there, how it is held, what are the rules/processes for access etc
  • Must also be clearly available, must be understandable, and adherence to the rules stated (both the legal ones and the self-imposed ones) must be checkable
  • There must be a clear statement on what rules are used to check that the data is eligible for inclusion. 
  • These must be around the sources of the information, what processes are used to validate the information, why data might be excluded (e.g. someone’s opted out, we don’t include children……)


  • Bland ‘PR’ statements tell the audience nothing
  • If it’s personal information how you can dispute the content and what processes they would use to check, correct or exclude disputed info

Privacy policy