A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.
"Data improves services and develops new treatments; data adds to knowledge and understanding; data saves lives."
Patient advocate, use MY data
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.
Our vision is of every patient willingly giving their data to help others, knowing that effective safeguards to maintain the confidentiality and anonymity of their data are applied consistently, transparently and rigorously.
What we do
Who we are and how we are run
use MY data consists of Members who are patient advocates – either patients, carers or families’ representatives. We also have Associate Members who work for patient organisations, charities, research institutions, the NHS.
use MY data is overseen/steered by a small Coordinating Group, which comprises a mixture of Members and Associate Members.use MY data is supported by the Secretariat, which comprises a Coordinator and Expert Data Adviser. At present the Secretariat is funded by the Leeds Institute for Data Analytics. Information about previous funders can be found on the funders page