The Nuffield Council on Bioethics report Personalised Healthcare: Medical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age looked at a range of issues that arise from personalised medicines from buying drugs on the internet, electronic healthcare records and accessing and sharing health information online. One of the big issues is of course the reliability or accuracy or stability of a source of information. The full report goes through the different information accreditation standards: so Honcode and the Information Standard that the DH launched in 2009 and also some I hadn’t heard of before: URAC (the Utilization Review Accreditation Committee) which is US based and seems to work on the quality of healthplans, Discern which is a questionnaire tool for assessing consumer information, MedCIRCLE (The Collaboration for Internet Rating, Certification, Labeling and Evaluation of Health Information) which is pan-European and Medieq which is funded by the European Commission.
I can’t help thinking that even ignoring the fact that lots of people are trying to do the same thing thus duplicating efforts that such schemes are bound to fail as they are voluntary and the nature of the internet is such that it would not be desirable for government to intervene. But the Nuffield Council’s website headlines with the ‘Government should do more’. Possibly other areas such as drug sales online which are indeed strictly regulated offline.
There was no mention of the potential role of information professionals even though I know some people working behind the scenes in patient information ensuring accuracy and accessibility to high quality information. Of course we go beyond the library, this quote amused: “The speed at which an enormous variety of information (well beyond what even the most lavish libraries once contained) may be accessed through targeted, consumer-initiated use of search facilities is far beyond what was previously available.” So where does that leave us? An interesting theme brought out in the document (but horrid to pronounce) is ‘responsibilism’ or “social and policy pressures for a shift in the balance of responsibility between individuals on the one hand and collective bodies and professionals on the other hand”…which I read to be people taking more responsibility for doing the critical assessment of information they find and having the knowledge and skills to do this. The report talks about the digital divide and the consumer pressure to push out healthcare services using online means so whilst some people speed ahead and adopt the internet as healthcare delivery driver others are catching up.