A movement of patients, carers and relatives

Harnessing the patient voice to build confidence in the use of patient data to save lives and improve outcomes


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.  

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:

  • Head of Programmes & Engagement (funded by NHS England)
  • Expert Data Adviser (self-funded)
  • Communications & Media role (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 Head of Programmes & Engagement 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.

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