Data and its use for society’s benefit is one of the areas where we are now seeing rapid developments in both practice and policy. And not just in terms of health care or medical research.
I thought I’d link-up a few of the announcements and news items that have happened just this past week to give people a sense of what is happening.
Today we see UK Biobank – the anonymised database of medical records of half a million volunteers – go live (in every sense!). The volunteers I have spoken too have been very impressed with the way this initiative has been run and how they have been treated. It will be interesting to see how UK Biobank deals with the public engagement piece of their work as things develop over time. Anyway, it’s a really important newcomer to the landscape and should be welcomed.
Locally, you’ll notice that a lot more announcements of this sort are being made by NHS organisations – in this case NHS Oxfordshire – detailing plans to put summary care records online. Readers will be interested in the second half of this article which details the ‘rights of access’ arrangements and safeguards put in place to retain confidentiality.
But the most interesting report or development this week in my view, was yesterday’s publication by the regulator, Ofcom, of its study of our changing attitudes and habits when it comes to online living. The study does not look at personal health data as such but it is a fascinating insight into the cultural transformation that is taking place. Theer are various news reports about it but I would highly recommend you look at the full report. It points to increasing confidence among the British public about online activity but also a more switched-on one when it comes to what to look for in terms of protection of their privacy. There’s also an interesting finding that trust in Government when it comes to data is higher than that which people have in retailers or banks (well,obviously, on the last one!).
This is also a really fascinating read – a report by KPMG entitled ‘Accelerating Innovation – The Power of the Crowd’ – published on Thursday and which, aside from making the case that patient expectations will drive eHealth, looks at some interesting case studies from around the world of eHealth innovation. The Danish model looks particularly attractive from a patient perspective. I quote from the KPMG website about Sundhed.dk:
“Every Danish citizen has their own personal web page, can view treatment/diagnoses from their own hospital record, book appointments with general practitioners, send secure emails to health authorities, order medication from pharmacies, monitor self-compliance with medication, and get access to local disease management systems.”
By the way, if you are generally interested in the ‘open data’ issue you may wish to keep an eye on the current sciencewise project underway. I think the first round of public dialogue sessions were held in January/February.