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

About us

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

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

  • We promote the benefits of sharing and using data to improve patient outcomes with sensible safeguards against misuse.
  • We act as a sounding board for patient concerns and aspirations over the sharing and using of data in healthcare and health research.
  • We provide learning resources for patient/carer advocates on patient data issues, including a library of resources of data security, consent and narratives from individuals about how collecting, storing and using data can help patients.
  • We advocate public policy that supports the effective use of patient data within appropriate frameworks of consent, security and privacy, and with the aim of providing benefit to patients and their health care services. 
  • We advise and support organisations who want to collect, store and use patient data for patient benefit, on topics such as consent, audit of clinical practice, security and privacy.

 

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. 
Our Associate Members are united by an interest in sharing healthcare data to improve patient outcomes under appropriate levels of consent, security and privacy.

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