Tag Archives: Your health records saves lives

Cancer patients seeking information about their condition want to know about clinical trials, study shows. Reply

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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 plus literature.  The authors make a number of recommendations that they say should be incorporated into ecancerHub – the online portal established by a number of cancer organisations and with European Commission backing to help patients find the information they need.

What struck me looking at the responses to the question ‘I want information on…,’ is the number of people who said they wanted information about clinical trials – over 70% as far as I can tell from Figure 2.  It’s this sort of evidence that supports the case for making information about research and trials much more ‘front-of-house’ by all providers, whether they be charities, clinicians or NHS organisations.  It’s the sort of evidence that supports efforts now underway in the Uk to make that happen including ‘Your medical records saves lives.’

You might also want to read the paper in conjuction with this report of a first-person account given by patient advocate, Jan Geissler, at a conference about online information held last year.   I rather liked the conclusion in the report that:

‘As somebody aptly put it at Doctors 2.0, e-Health should not stand only for electronic health, but should stand for “empowering health”, i.e. empowering the patient through social media and the co-production of knowledge online.’

As an aside, those of you following the medical records issue might be interested in this blog on Which?Conversation from before Christmas.

‘Your health records saves lives leaflet’…now available here Reply

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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 also see the UKCRC news release here:  PA_Final_21_11_2011

Available in all good GP surgeries – new patient information leaflet on the use of patient data for research 2

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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.