Data Sharing Review

[Mary Hawking]

In message <20080717131601.15918.6080.Mailman@chiark.greenend.org.uk>, 
ukcrypto-request@chiark.greenend.org.uk writes

>however
>I thought that we were talking about EPRs and the infosec matters 
>arising from that.

We do seem to have wandered a bit!
If you are looking at access to individual medical records in the 
context of medical care, it would seem to be inevitable that systems 
will be circumvented in the needs of working on the patient: in A&E, the 
doctors don't, at present, have to spend time hunting for the patient 
record - even if it is thought to exist within the hospital system.
If the Summary - or Detailed - Care Record existed, would it be a good 
use of medical time to stop the resuscitation , find a free terminal or 
tablet PC, log on , read the information - and then return to the 
cardiac arrest?
Worse if the consultant has to log on in person.. And keep a finger on 
the button!

The Data Sharing Review seems to me to be more sinister. What Mark 
Walport has been lobbying for for some time is the *right* for 
reasearchers to have untrammelled access to all the nation's (England's) 
medical records, individually identifiable if the researcher - who may 
not be a part of either academia or the NHS - feels that this is 
needed/useful for their research project.
http://www.flyonthewall.com/FlyBroadcast/wellcome.ac.uk/UKCRC_FrontiersMe
eting/index.php
I don't feel that encrypting the NHS number is actually going to prevent 
identification of individual patients.

Another problem with the report is the very partial use of quotes from 
the submissions.
If you look at the communications from the medical organisations and 
BCS, they distinguish clearly between sharing information on individual 
patients between health professionals for care of that patient - already 
done in referral letters, and a part of good patient care - and sharing 
information in the sense MW assumes. The implication in the Data Sharing 
Review that there is any support - let alone widespread support - for 
researchers to have a right to access all medical records outside the 
cancer and research circles appears to be a wishful interpretation by 
the author of the review...

bw
Mary Hawking

-- 
Mary Hawking