A movement for patients, relatives and carers
Harnessing the patient voice to build confidence in the use of
to save lives and improve outcomes
Read about some of our areas of policy lobbying and advocacy
We want to help simplify the processes and reduce the timescales for ethical researchers (healthcare professionals, academics and companies) to access the data they need
Ensure that the National Data Opt-out is upheld effectively by the 54,000 organisations that it affects so that public confidence is gained and maintained
In a world which is largely focused on the risks of data, we work to help reassure the general public that our data is safe AND is being put to good use for public benefit
"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 25% of tissue samples which are stored in tissue banks are actually used.
Read more here
Exploring the potential and current work which may be underway around the topic of data donation (similar to tissue donation). Begin with a workshop involving key organisations such as NHS Digital.
Read about the workshop here
Exploring the current controls which are in place, how these protect our data, but also how they may be preventing research from taking place.