A movement of patients, carers and relatives
Harnessing the patient voice to build confidence in the use of patient data to save lives and improve outcomes
Read about some of our areas of policy lobbying and advocacy
"This work uses data provided by patients and collected by the NHS as part of their care and support"
Read about the development
Our work to examine what information is available to patients in GP Practices about the National Data Opt out
Read about this
A paper written by use MY data to examine whether the NHS Consitution could be rewritten
to place as much emphasis on our responsibilities as patients as we have about our rights
Read our article
A joint campaign with the Medicines Discovery Catapult is seeking to gain recognition that
only 15% of tissue samples which are stored in tissue banks are actually used.
Read more here
Transparency should underpin everything and is essential if the trust and support of patients and the public is to be maintained and developed.
In a nutshell – Say what you do, do what you say.
Read about our position here
Our workshop held under the banner All talk and no access? explored the practical and regulatory
obstacles to more widespread use of patient data in both academic and clinical research.
Read the workshop summary here