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

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 currently making an application to register as a charity.

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. 

Secretariat roles

The use MY data Secretariat roles are:

  • Coordinator
  • Events Manager
  • Expert Data Adviser (self-funded)

Hosting for the Secretariat roles:

  • Leeds Institute of Medical Research

Current funders

Our funding comes from different sources:

  • NHS Digital & NHS England
  • Health Data Research UK
  • Bowel Cancer Intelligence UK


Previous funders

Previous funding for the Secretariat and our workshops:

Providing venues for workshops and Advisory Group meetings:

Providing expenses for patients, relatives and carers to attend a workshop or webinar:

Providing funding for specific projects:

  • Roche https://www.roche.com/  
    Roche provided a grant to support ‘The Issue with Tissue’ campaign. A condition of the grant requires us to note: “This activity has been supported by a grant from Roche Products Limited. Roche Products Limited has had no control over the educational content of this activity.”