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.