The fundamental issue at stake here is respect for the citizen. The last month of debate about care.data feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper? Many will say that NHS England - who yesterday announced a … Continue reading Comment: So what next for care.data?
The following is a more polished and slightly amended version [the bits in brackets I didn't say] of the remarks I made at the ABPI/NIHR conference about big data which took place in London yesterday. The title of the conference was: '360 of Health Data - Harnessing big data for better health.' I had written … Continue reading Big data, big stage, cue patients as the leading actor. Remarks at #bigdata2013 on the patient agenda
This is a fascination study published by the open access journal ecancermedicalscience. I think it was actually published in November but only came to my attention via Twitter yesterday. It looks at the needs of cancer patients and organisations across Europe when it comes to online information. The results are based on a pan-European survey and questionnaire … Continue reading Cancer patients seeking information about their condition want to know about clinical trials, study shows.
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 ‘Your health records saves lives leaflet’…now available here
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 Available in all good GP surgeries – new patient information leaflet on the use of patient data for research