This leaflet ‘Your health records saves lives’ (click on the picture below) marks the fruits of much hard work by the UK Clinical Research Collaboration (UKCRC) partnership over two years.
Conceived, designed and written with patients very much as partners in the process, it seeks to explain how patient data is used for research purposes.
From Monday 21 November it will be available in 6000+ GP surgeries in England as well as Scotland, Wales and Northern Ireland filling a huge void in what patients can get from their primary care providers on this topic. We’ll be evaliasing it over the winter and hopefully will have a case therafter to scale it up in terms of availability.
You can view a copy on the NHS Choices website and please forward it far and wide. I imagine the other UKCRC partners will carry it on their websites in due course too.
Note the NIHR involvement. When the Academy of Medical Sciences published their report on research regulation (‘A new pathway to etc etc…’) earlier this year, they urged NIHR to support work such as this which would raise public awareness of the importance to health research of patient data and the willingness of patients to participate and become involved. So, they have made a small but significant step towards meeting this call by supporting this leaflet.