How a Dame and the Great British Public might bring an end to the patient data pantomime…

The Health Service Journal (HSJ) has an ‘exclusive’ interview today with Dame Fiona Caldicott.  Dame Fiona has been chairing a review – of information governance in health and social care – ‘Caldicott2.’  Its report and recommendations are due out in just a few short weeks.

You have to subscribe to HSJ to read the full interview but you can find the accompanying news report here.  It would seem Dame Fiona and her review team will be making a case for a duty to be placed on health and social care organisations to share information where it is in the patient’s interest.   This would become an additional principle to sit alongside the six that already exist following the first Caldicott review in 1997. How very sensible.  

Sounds like the review will be equally sensible when it comes to its recommendations on the the handling of patient data for research purposes.  Thank goodness.  

The pantomime about the use of patient data for research has been allowed to go on for too long.  The policy wonks and the odd lawyer have selfishly hogged the stage in their horse costume.  Meanwhile, the Big Brother doomsayers have hovered in the background with an intermittently tuneful chorus of pro-research voices standing in the wings, imploring us to hand over our data.  As both sides have exchanged the traditional chants of ‘Oh yes you will’ and ‘Oh no you won’t’ few among their number have noticed or cared about the lack of audience participation.

How appropriate therefore that a combination of a ‘Dame of the British Realm’ and the Great British Public should bring us all to our senses.  For, let’s not forget, this review actually went out and talked to citizens and patients.

A few years ago when we were developing the patient leaflet ‘Your health records save lives’ , we initially got together a group of experts.  Cue a hideous stalemate of opposing and frankly irrelevant views (from a patient perspective , anyway) based on people’s interpretation of policy and law.  So what did we do?  We took the debate outside the room and asked patients and GPs what they felt, what they wanted to know, and how best to present this.  The leaflet (link above) is the result of that.  Shame that, despite its success out there, we can’t seem to find someone to fund its further production and distribution.

With that…and no other comment…I shall leave you with this story today about the Department of Health commissioned report by the Royal College of General Practitioners (RCGP) on GP practices providing online access to medical records.

The patient?  S/he’s behind you…..





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