About use MY data
use MY data is unique. We are the only UK independent movement of patients, relatives and carers focused on the use of patient data to save lives and improve outcomes.
Our vision:
Our vision is of every patient in the UK willingly giving their data to support medical research and their own care. We work for this through a strategy of positive engagement, bringing patient voices to discussions about patient data.
Our mission:
To be a Trusted Voice for patients and the public in all discussions and decisions about the use of our data for research and improving healthcare
Our aims:
To promote the responsible and accountable use of data to improve health and health research, and to help to remove barriers preventing this
To highlight the benefits of using patient data for our individual health and for our communities
To help to ensure patient data is used to create and support an NHS that is better for all
To advocate for robust and transparent safeguarding of data, which is clearly communicated to patients and the public
To provide balance as a trusted voice in patient data, highlighting aspirations and concerns around the use of patient data
To act as a critical friend and sounding board to organisations who want to collect, store and use patient data to benefit society
To build knowledge and expertise for patients, families and carers to help them play a more active and informed role in discussions and decisions about patient data
"use MY data to help others and help me"
Our governance and structure:
Our independent voice is at the core of why use MY data has operated effectively and been hugely impactful, despite its modest resources. Retaining this independence is crucial.
We are Member-led and set our own agenda and work programme. We are supported by a small Secretariat who are advised and work on behalf of an Executive Group of nine, drawn from the Membership.
As far as we are aware our structure and way of working is unique, and it is something that our Executive Group and Members value highly.
Membership is free. This is a community which works to build confidence in the use of patient data. The membership receives regular updates about patient data matters including engagement opportunities, event information, patient data developments, opportunity to input into consultations.
Our membership also have access to guidance/support on patient data information and queries via the Secretariat, and receive direct invitations to use MY data events.
Members - patient advocates who are either patients, relatives or carers. The more Members and Associate Members we have, the stronger our voice becomes in campaigning for patient data to be used to save lives and improve treatments.
Associate Members – who are clinicians, researchers, charity workers, academics, public and commercial sector workers. They are united by an interest in sharing healthcare data to improve patient outcomes under appropriate levels of consent, security and privacy.
Our Executive Group is drawn from use MY data Members. The Executive Group, comprising up to ten Members, defines the priorities, actions and activities of use MY data, representing its Members and advising the Secretariat on the Members’ behalf. Full details of our Executive Group can be found here., together with minutes from all Executive Group meetings.
Our Secretariat supports the work of use MY data. All the roles are part time, and comprise our Head of Programmes & Engagement, Data Adviser, a Communications & Media Lead and an Administrator.
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 currently applying to become a charity.
Our funding & support
Our funding comes from the following sources:
- Cancer Research UK have provided 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 supports the Communication & Media role, plus an Administration Lead.
- NHS England provide funding for the use MY data Head of Programmes & Engagement role
- Our Data Adviser is self funded
- 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.
