Use MY Data

Use MY data is an independent movement of patients, relatives and carers. 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 advocates on patient data issues, including:
    - hosting workshops for patients and the public, focusing on topics related to patient data
    - a library of resources of data security, consent
    - 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.

Details of some of our previous workshops

Our workshop topics are suggested and prioritised by our members.  Just a few examples of the workshops we have previously run:

  • Primary Care’s pivotal role regarding patients and their data – we examined what is being done to help GPs have a conversation with patients about the uses and sharing of patient data
  • Commercial uses of patient data – we brought together a range of commercial companies, patients, bodies that govern data and data privacy organisations, to understand how and why commercial companies use NHS data
  • Patient data and tissue samples; benefits, barriers and concerns – we heard from pathologists, patients, researchers and governing bodies, and examined the benefits of and barriers to donating tissue samples
  • Who uses your data? We explored who uses patient data, why they use it and the benefits and risks of its use.

Patient data saves lives – let’s acknowledge it

  • use MY data members have developed a citation that recognises the benefits of using patient data and acknowledges the patient contribution
  • We want the citation to be included on all publications using patient data.

  • Understanding Patient Data has adopted the citation, encouraging its use on all work underpinned by patient data, including publications, presentations, event materials and press releases.

Who we are

  • Members are patient advocates; patients, carers or relatives who wish to build confidence in the use of patient data for research and analysis.
  • Associate Members work for patient organisations, charities, research institutions, public sector and commercial organisations and support the work of use MY data. They are united by an interest in sharing healthcare data to improve patient outcomes under appropriate levels of consent, security and privacy.

Get Involved

  • Join us – there is strength in numbers! To join use MY data, or get more information, please get in touch: getinvolved@useMYdata.org.uk