Thursday, June 28, 2012

There Are Some Important Lessons Here About Health Information Sharing. We Ignore Them At Our Peril.

The following excellent article on the UK NHS’s Shared Care Record (SCR) appeared recently.

In the summary time

The creation of Summary Care Records for 50m was the most high profile and contentious of the national projects set up by the National Programme for IT in the NHS. Patients were supposed to view and add to these records via the website organiser, HealthSpace. Rebecca Todd looks at the bumpy path of these data-sharing initiatives.
20 June 2012
‘Delivering 21st Century IT’ promised to build a “life-long health record service” that would give healthcare staff and patients access to “universally available, secure, accurate and up to date health records.”
The National Programme for IT in the NHS, which took forward the strategy, turned this commitment into the NHS Care Records Service.
On the one hand, it set up a national project to create a Summary Care Record – a central record of a patient’s health status that was intended to provide vital information for staff working in out-of-hours and A&E services, and for temporary residents.
On the other, it set up local service provider-led projects to deliver detailed care records systems to trusts and other healthcare organisations; with well-known results.
Targets and rows
As with the other national projects to create e-booking and e-prescription services, NPfIT set a highly ambitious target for the roll out of the SCR. Every patient in England who wanted a record was to have one by the end of 2007.
By the time the first trial - at two GP practices in Bolton – went ahead in March 2007, new guidance was saying that full roll-out should be achieved by the end of 2008. The delay arose, in part, because the programme soon ran into an outcry over confidentiality and consent.
Privacy campaigners argued that the Summary Care Record was an extension of the ‘database state’, and that patients should opt-in to the programme, instead of having to opt-out and having a record created by default if they failed to do so.
Detractors also argued that patients did not fully understand what information was being uploaded, and that they system was wide open to abuse by anybody with an NHS smartcard.
The British Medical Association was concerned that information was not being kept up to date and its General Practitioners Committee called for the roll-out to be suspended until reviews of the content and consent process had taken place.
The review of the record’s content, led by NHS medical director Sir Bruce Keogh, concluded that the core record should only contain a patient’s demographic details, medications, allergies and adverse reactions, and that these should continue to be copied from the GP’s medical record.
A separate review concluded that an opt-out form should be included in patient information packs. Following these reviews, the coalition government gave the green-light for the project to proceed.
Other ways forward
Despite the slow progress of the SCR roll-out, the drive to share relevant patient information among appropriate health professionals is stronger than ever.
This is shown by the development of local shared record schemes in a number of areas including Cumbria and Hampshire.
Dr Paul Cundy, the chairman of the BMA and RCGP's joint IT committee believes that over the next ten years, the GP record will assume the role of the single electronic record.
“Increasingly people are looking to link up to or add to or extract from the GP record and that’s because it’s so far ahead of anything else that you could develop that it’s the natural place at which to start,” he explains.
“The concept of the GP record becoming the default single electronic record for the patient - that’s fine. We have for the last 60 years acted as the collator of the patient history and that will just bolster our position as the patient guardian.”
Dr Cundy also predicts that over the next decade, there will be a social media effect on health records, starting with lots of “app like applications” and integration of personal communication devices such as mobile phones and iPads into health care.
Emailing GPs, booking appointments and checking results on line will be “taking off in a big way,” he argues.
“Ten years ago when they first told us (GPs) what they were going to do to us (as part of the NPfIT). We were initially worried, then we realised it wasn’t going to happen and it was just a matter of time - of waiting - until it fell apart. And it fell apart.”
Lots more here:
It seems to me this article has a huge number of lessons for Australian policy makers and that the saga it covers needs to be much better known than it is.
The last paragraph I find particularly telling. I wonder, a decade from now, will GPs in Australia have had a similar experience - I suspect so.
The whole of the last section seems to me to reflect where we should be going and it is pretty sad we are heading down the present blind alley.
The whole article needs a very careful read.