How we operate
Our legal status, structure, funding and terms of engagement.
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.
Our funding & support
Our funding comes from the following sources:
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Cancer Research UK has provided funding for 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
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NHS England provides funding to underpin the work of use MY data
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Health Data Research UK has provided one-off funding to support the work of use MY data, including running costs, honoraria, travel and meeting costs and facilities
Reports and Consultation responses
The use MY data Secretariat coordinates the production of responses to consultations, letters to stakeholders and written summaries of workshops and webinars on behalf of the Executive Group. The Group acts on behalf of use MY data’s Members – patients, relatives and carers who want patient data to be used for research. For consultations, the Secretariat would usually consult with all of our Members to seek their views and include all of these in our response - we believe there is strength in presenting a wide range of patient views about the use of patient data.