Here are the results of the poll.
Should Pathology and Radiology Results Be Uploaded To The PCEHR, And Made Accessible To Patients, Before Review Of The Information By The Patient's Clinician?
For Sure 6% (12)Probably 4% (8)
Neutral 2% (4)
Probably Not 29% (60)
No Way 58% (121)
I Have No Idea 1% (2)
Total votes: 207
It seems most don’t think that result information should be made accessible to patients before review by the ordering clinician.
Good to see such a clear outcome and lots of votes.
Again, many, many thanks to all those that voted!
David.
David,
ReplyDeleteRe this week's question about consent to upload.
If the PCEHR really is "Personally Controlled", the patient should have the option to decide what they want.
They could set a default (always/never) which they could over-ride if they wanted to.
Taking it a bit further and making it potentially more useful, they could set defaults according to some condition - type of test, requester, testing institution etc.
The poll result is clear-cut (unsurprisingly), but since the question did not reflect what is proposed, it's not very helpful.
ReplyDeleteAs for conditional consent - given the unpredictability of what turns up in test results, implementation of this would be 'challenging' (& highly likely to lead to unintended outcomes).
AFAIK the proposal is to just upload data willy nilly after 7 days. (Later modified to take some material out by the RCPA) That is what most see as stupid. If anyone has a clearer idea of what is planned - given there are now more meetings planned because of the outrage here and elsewhere feel free to explain.
ReplyDeletePatient consent - not challenging issues is the issue!
David.
Hypothetical 2: could this happen?
ReplyDelete16-year old Lara was very worried and went to see a GP. Not her usual family GP, because she could not let her parents know that she was probably pregnant and wanted to have a termination. She explained this to the new GP; remembering that her parents had set up a PCEHR record for her a few years ago, and knowing that they could access this record on her behalf (she had seen her immunisation records online). She asked that the GP not send a summary of her GP appointment visit to her PCEHR. The GP agreed, and proceeded to print out a pathology request, and instructed Lara to go and have her blood and urine tested at a local private pathology provider. When Lara went to have her blood taken and give a urine sample, she handed over the form, and the pathology technician entered the details into their local pathology information system. She explained that the results would be available to the GP within 48 hours, and she should ring the practice to find the results.
Lara rang the practice to ask about the results, and the GP called her in again to counsel her and determine next steps. The GP advised on termination options, and together they arranged for Lara to attend a clinic just over the border of the next state, to have a termination (a day procedure). When Lara attended the clinic, the clinic doctor accessed her PCEHR. She was prescribed medication, and she signed a form for the procedure. She went home with a booklet on what could go wrong and who to call if it did. She checked again that no record of this event would be posted to her PCEHR.
A few days later, her mother and father were furious. Her mother had received an email from the PCEHR operator saying that two new providers had accessed Lara’s PCEHR. Curious, Lara’s mother had opened Lara’s record online, and could see there were new PBS claims for medications, one which looked like the ‘abortion pill.’ There were also two MBS claims, one for a pregnancy test, and one for a procedure in a clinic she had never heard of.
There was also a prescription and dispense record for birth control medication!
Lara cried into her pillow all night. She was sure she had done the right thing in requesting that the details of the GP event and the pathology result were not posted to her PCEHR.
I certainly fear this is just the sort of thing that might happen. An awful saga!
ReplyDeleteDavid.
Re Lara's "experience".
ReplyDeleteIt would seem the IT system worked exactly as designed. Neither the the test nor the test results showed up on her eHR.
The fact that billing, prescription and new provider details showed up also seems to be exactly as the IT system was designed.
Draw your own conclusions.
Keep building new things that way you never have to fix the mess up, which probably all seems to hard anyway and a thousand excuse can be found as to why. The problem is it just gets harder the more new stuff they do.
ReplyDeleteHypothetical 3: Sam’s shadow.
ReplyDeleteSam was due to fly out to India for 2 weeks for work, and needed to see his GP for a check-up. While there, he mentioned a nagging persistent cough. His GP suggested he have a chest X-ray just to be sure, and wrote out a request form for a local Medical Imaging service.
Sam had the X-ray taken; then the next day he flew out to India. Meanwhile, Sam’s GP practice had some computer problems, and some incoming messages from pathology and imaging providers were lost.
After 7 days, the Chest X-ray result report was posted to Sam’s PCEHR by the imaging providers. Sam had not opted to be notified by email or SMS when his PCEHR was accessed.
When Sam returned to Australia, his cough had improved and he felt well. He had not heard from his GP. No news is good news, he thought.
A year went by. Then one day, Sam started coughing up blood, fainted and was taken by ambulance to the local hospital ED. When hospital staff accessed his PCEHR, the doctors saw that the most recent item was an imaging result from over a year ago, reporting a shadow on Sam’s lung, a tumour which may have been treatable then, but which was too far gone now.
When Sam died in hospital a week later, his hospital discharge summary was posted to his PCEHR, where it remained forever unread, like a lonely tumbleweed in a desert of apathy.
Does this saga not show how parallel systems are worse than useless and dangerous.
ReplyDeletePatients need access to real live systems, not pale imitations.
David.
Parallel systems are dangerous for patients. In Hospitals it is a challenge to ensure that there is a single (or close to) source of the truth or that parallel systems are synchonised.
ReplyDeleteSometimes the omission of a record is more dangerous than a wrong record - if the record is wrong enough then it may be recognised as such.
Having a partial diagnostic record in the PCEHR or one that is inconsistent with the GP record is dangerous for the patient.
It is interesting to note the number of test results incorrectly ascribed to the wrong patient which are only discovered when the bill goes to the wrong person!
ReplyDeletePushing results to the PCEHR requires care.