Original URL: http://www.theregister.co.uk/2006/11/24/cfh_crdb/
Care Records conference opens and closes debate
Questions, questions, questions
The third annual Care Record Development Board get-together got underway yesterday (Thursday), bringing together "key stakeholders" in the government's proposed digitising of the UK's medical records.
Key stakeholders, of course, just means anyone who has any kind of interest in medical records, so attendees included patients, doctors, social workers, nurses etc.
The CRDB is an overview body, ostensibly designed to keep an eye on the ethics of digitising and sharing confidential patient data. Dr. Simon Eccles, one of the clinical leads at Connecting for Health, told El Reg that the CRDB is the "conscience of CfH". He added that it often acts to "puncture our tendency to pomposity".
The conference was trying very hard to be about soliciting feedback from the delegates , and the workshops in the afternoon had a very participatory feel. Up for discussion were proposals to merge* healthcare and social care records, for instance. The workshop leaders asked delegates to put forward opposing and supporting arguments. A debate followed, with a final vote narrowly supporting the notion.
There was also a master class in the basics of the National Programme for IT, the main part of the Connecting for Health programme, and a debate about how best to deal with care records of children. Future plans for HealthSpace, online, patient access to care records, were given a thorough airing, with delegates' views on authentication and access being sought and discussed in detail.
Plenty of lip service was paid to the importance of openness and transparency, and many of those running the workshop sessions seemed genuinely concerned with making sure all kinds of views were recorded. But it remains to be seen how much of what went on will actually affect decisions that are made.
And it is also worth noting that while open debate was encouraged, dissenting voices were not given much credence.
During the second presentation, one delegate stood up and protested that he wanted nothing to do with having his data stored on the "spine", the central database of medical records. The chair of the session dismissed his concerns saying "Well, you and I obviously disagree about the silliness of the system. Forgive me, I am a supporter."
Despite all the effort to be open, and to seek as many views as possible, it was hard not to go away with the feeling that it is at least partly for show. Forgive CfH. They are supporters. ®
*This isn't about to happen tomorrow, but moves are certainly afoot to begin formally sharing data across the two care providers.