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.

Status and Funders

Our Legal Status

use MY data is an independent movement of patients, relatives and carers.  In October 2022 we established ourselves as a not for profit company limited by guarantee, allowing us to receive funding directly allowing us to manage contracts and employ staff directly, though some of our Secretariat remain hosted in academic institutions.  

We are extremely grateful to present and past funders. We have never been influenced or steered by our funders – they have all given us free reign to do as we see fit with their funding, with the work of use MY data being defined by its Members and the Advisory Group, for the benefit of patients. 

The use MY data Secretariat roles are:

  • Coordinator (funded by NHS England, hosted by the Leeds Institute of Medical Research)
  • Expert Data Adviser (self-funded)
  • Communications & Media role - to be appointed (funded by Cancer Research UK)
  • Business and Administration role - to be appointed (funded by Cancer Research UK) 


Our Funding

Our funding comes from different sources:

  • Cancer Research UK are providing funding use MY data for three years from April 2023 to help us expand our work around awareness, trust and support for the use of patient data in research.  This funding will support a new communication & media role, plus a new a business administration role. 
  • NHS England provide funding for the use MY data Coordinator role 
  • Health Data Research UK have provided one-off funding to support the work of use MY data, including running costs, honoraria, travel and meeting costs.  Health Data Research UK also provide meeting facilities and refreshments for our Executive Group and Secretariat to meet.


Details of our previous funding and support for our workshops is available here.