Nuffield report underlines importance of public participation if people are to trust how their medical records are used for research

The Nuffield Council on Bioethics have today published their report: 'The collection, linking and use of data in biomedical research and health care: ethical issues' following months of inquiry by an expert working group Chaired by Professor Martin Richards.  Here's a copy of the actual report. There is much coverage in the media already including the... Continue Reading →

How a Dame and the Great British Public might bring an end to the patient data pantomime…

The Health Service Journal (HSJ) has an 'exclusive' interview today with Dame Fiona Caldicott.  Dame Fiona has been chairing a review - of information governance in health and social care - 'Caldicott2.'  Its report and recommendations are due out in just a few short weeks.You have to subscribe to HSJ to read the full interview... Continue Reading →

Caldicott 2 public evidence sessions

If you are looking for Olympics-mayhem avoidance strategies then what better than taking the opportunity to share your views on Information Governance. My good colleagues at INVOLVE have reminded me to remind you, that Caldicott's remaining public workshops will take place on 8 August in Birmingham and on 22 August in Oxford.  The one in Leeds today was... Continue Reading →

Here's hoping this works.  So, (sorry John Humphries et al) rather than send you all off somewhere else, here is the pdf of the whole patient information leaflet 'Your health records saves lives' which I wrote about yesterday.  Click here: PHR LIFT England online As I say, please pass it on...for me. And you can... Continue Reading →

Available in all good GP surgeries – new patient information leaflet on the use of patient data for research

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.... Continue Reading →

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