Thursday, August 22, 2013

This Is A Really Messy Outcome That Seems To Have Happened When People Were Opted-In To A Shared EHR.

The following appeared a little while ago.

Patient lost £18,000 legal battle over GP medical records

Sara Tenneson faces paying hefty legal costs after she tried to have confidential information removed from her file
The retired garden historian's experience is a cautionary one for NHS patients who think they control what's on their medical records.
In a pilot scheme NHS England recently began quietly uploading patient records from 100 GP surgeries, although the information commissioner warned the health service "there is still a lot of work to be undertaken to ensure that all of the obligations of the Data Protection Act will be met before national roll-out ... can begin."
Some are disturbed by the strategy to go "digital by default". Andrew Miller, chair of the Commons science and technology committee, wrote to Cabinet Office minister Francis Maude with concerns that "as public services go online, the government may not keep up with advances in technology and that inadequacies in government software may lead to security vulnerabilities".
The NHS is of particular concern as patient data is supposed to be anonymised. Martyn Thomas, vice-president of the Royal Academy of Engineering and chair of the IT policy panel of the Institution of Engineering and Technology, told the committee that personally identifiable data in medical records could be matched against other datasets. "That has been demonstrated time and time again. Therefore, the notion of useful anonymised personal data is an oxymoron."
Phil Booth, co-ordinator at patient privacy group medConfidential, said that though the changes are "momentous", not enough has been done to explain what they mean for patients. "A few breezily-worded leaflets in your GP's waiting room isn't proper notification for the systematic hoovering up of confidential information from 50 million peoples' medical records. So much for choice and consent – patients are deliberately being kept in the dark."Challenging the medical establishment's ownership of her patient record left Sara Tenneson without access to a regular GP. Her plight is at the heart of a tussle between bureaucrats and the public, with ministers publishing draft guidance for citizens to be able to remove "data whenever (they) want".
Her ordeal began in September 2011, when Tenneson's GP wrote a referral letter to a hospital consultant about her treatment which included information on a traumatic episode imparted to her previous GP in 1995, but which she was unaware was still on her medical record.
Fortunately, having sight of the letter before it was sent, and extremely shocked that it had been included, she asked the practice to remove it, as it had ''no relevance.'' The information was removed, and a revised letter was sent.
More of the saga here:
This is a very, very sad saga which it is important for all of us with an interest in Australian e-Health are aware of.
Clearly if you are going to have an opt-in approach, which we might just see from a desperate Government if the PCEHR is not being used a year from now, you need to ensure everything that goes to the record is seen and approved by the patient. It is as simple as that!


Anonymous said...

The "simple" principle is that Government, Bureaucracy or anyone else has any right, interest or stake in Patient/Clinician Confidentiality!

For this reason alone, notions of the UK's SEHR and Australia's PCEHR are fundamentally flawed concepts.

Participation in these Government healthcare/ eHealth Faustian bargains will inevitably be a losing proposition to this key covenant and necessarily trusted relationship between Clinicians and Patients!

Anonymous said...

I was waiting in a Medicare shop today, when the elderly gentleman sitting a few seats away was approached by an 'eHealth person' and asked if he would like to sign up for an electronic health record. He was quite interested and polite, and dutifully handed over his medicare card and other details. The eHealth lady spoke of the benefits. Also suggested that next time he goes to hospital he could request to have his details uploaded to his health record. I overheard everything, and would also have been aware if he chose not to have a record. No pressure….
Then once she had taken all his details and signed him up, she explained to him that he would be sent a code and he could use this to log into his computer at home and set up his record, including his access settings. A very disappointed look came over his face as he explained that he was not a 'computer person' and that could someone ring him on the phone, or send him his record? She then explained to him that he would not be able to see his own record, but that his doctors could. He seemed a little confused. Too late! Another consumer for the tally. I hope he gets some benefit from it. I am absolutely certain that in that 5 minute space of time, it would not be possible to fully inform him of anything.

Anonymous said...

Good point.

How many of the currently bandied about numbers of PCEHR registration numbers are actually bona-fide numbers where a patient has fully completed the registration process and activated their PCEHR?

As opposed to numbers who have naively signed a form when recently confronted by a PCEHR agent holding a clipboard at some government establishment??

Good question to table at the next debate or Senate Estimates hearing.

A more important question would be "How many clinical encounters have occurred where the PCEHR was referenced and supported safer more effective care?"

Anonymous said...

8/22/2013 08:11:00 PM I was waiting in a Medicare shop today, when the elderly gentleman sitting a few seats away was approached by an 'eHealth person' and asked ....

The poor man can only be described as the victim of predatory, intrusive, misleading practice. I expect the Privacy Commissioner and patient rights organisations will have something to say about this. The body behind this deceitful practice needs to be hauled over the coals over such disgusting behaviour.