Data death/data lives – Connecting the Dots

Interesting to see the follow up to the question of medical research and patient data in E-Health Insider, which makes the connection with C4H:

A CfH spokesperson commented: “The electronic care records service will be introduced over the next few years and will create a huge and valuable resource for research, for improving clinical care and patient safety. It can only do so successfully if it has the confidence and support of the public who are rightly concerned about the confidentiality and security of their clinical records as well as supporting properly conducted and ethical research.

“The NHS Care Record Guarantee for England sets out the way in which the NHS will collect, store and share our records, when and how we can limit sharing, when and how we will be asked to consent and what happens if something goes wrong. This is the first such guarantee published by a government department and supported by ministers and sets a new standard of transparency and accountability to the public. Far from obstructing good, ethical clinical research the Care Record Guarantee will support it.”

You ain’t seen nothing yet

I went to a very interesting meeting on London’s NHS IT last night, very informative, with an interesting point that at present the roll out has been of stand-alone systems. When these are connected up, as is the master plan so to speak, that’s when worries about who will have access to patient records will really take hold. The principle is that it’s based on your NHS work role, but that generally means you will have greater access to records than you really need. And it will be a hugely complicated system to administer and audit. If you think the sex offenders in schools was a tough one then go figure the challenges faced by one of the largest organisations in the world – the NHS. This is why training and education will be as important as physical security measures for records – soft systems as well as hard systems if you like.

On the plus side when the IT system implemented by Connecting for Health does connect up it will provide a national databank of great value to medical researchers – once the problems over data confidentiality have been sorted out!