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 host patient data workshop workshops for patients and the public.  The wide-ranging programmes are devised by our members.

• 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.

• We have developed a citation that acknowledges the use of patient data – This work uses data provided by patients and collected by the NHS as part of their care and support.  This has been adopted by Understanding Patient Data who have helped to spread the message.

• We are building a library of patient stories http://www.usemydata.org/stories5.shtml where patient advocates talk direct to camera about the positive uses of patient data.  We transcribe the videos into case studies, which are available at http://www.usemydata.org/casestudies.shtml