This appeared last week:
Online pathology results confuse patients
Two studies highlight the risk of poor understanding and worry when patients access online results written for doctors
19th February 2020
Many patients have a hard time deciphering online test results, leading to unnecessary anxiety, doctors warn on the back of two new studies.
The findings raise questions over the benefits versus risks of giving patients access to their digital pathology reports and highlight the need for test results to be written with patients in mind, they say in JAMA Dermatology.
The warnings come at a time when Australia is encouraging pathology labs to upload their results to patients' My Health Records.
The first study surveyed 225 patients to see how well they understood the diagnosis after reading a pathology report online.
Half of the participants said they used an online patient portal to access health records at least once a month, and another 19% checked weekly.
However, when researchers asked patients to answer a multiple-choice question about their diagnosis, only 12% circled the correct answer, and almost half of them left it blank.
"Misunderstandings around pathology reports can definitely create anxiety for patients that may require additional conversations with their physician to resolve," said senior author Dr Alice Watson, director of quality and safety for the dermatology department at Brigham and Women's in Boston, US.
"As more patients gain online access to their pathologic test result reports, it is important to consider how to optimise these reports to improve comprehension by patients and reduce potentially negative consequences."
The other study surveyed 160 dermatologists about sharing pathology reports online.
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Well what a surprise!
Yet another area where the proponents of the #myHealthRecord are an evidence-free zone.
Yet another area where the proponents of the #myHealthRecord are an evidence-free zone.
It is clear that patients who have specific chronic diseases can benefit from being able to track their progress or monitor their status – think long term diabetics watching their blood sugars etc. – but as this study shows any report with significant clinical complexity may both confuse and worry many patients – and certainly not have the effect of improving their understanding without additional explanation.
The best situation is that the patient has the result explained by their doctor in a situation where questions can be asked and answers provided at the same time.
Just throwing all the results up into the #myHealthRecord and a week later letting the patient see what may be complex and confusing reports is really another sick joke I believe.
In my view we need careful research done on who and when patients benefit from access to their results without clinician guidance and how they can be supported with explanations etc. if that is sensible.
This is a classic example where a ‘one size fits all’ approach is just wrong and my result in considerable patient anxiety and distress. Let’s see the evidence of safety and utility before pushing all this data up into the #myHealthRecord. For those who want the data I say great – they understand what they are doing. For the rest I am not so sure it is anywhere near a good idea!
What do you think?
David.
11 comments:
I think access to trained medical folk and a health system that is preventative based might be great.
"As more patients gain online access to their pathologic test result reports, it is important to consider how to optimise these reports to improve comprehension by patients and reduce potentially negative consequences."
Isn't it obvious? Everyone has to have a medical degree and have Digital skills.
But seriously, test results have to be interpreted in context of other information which, a) won't be in their myhr and b) patients wouldn't understand that either.
The reports says "Many patients have a hard time deciphering online test results".
Many? When "only 12% circled the correct answer" more appropriate words are "very few".
The ADHA mantra of "give patients access to their health information and they can take charge of their healthcare" is the stuff of fairy tales.
It's as silly as saying that if only everyone had more money, nobody would be poor.
Yes, I agree with you all.
Yet another example of "Just because they can do it, doesn't mean they should do it".
Adding the raw diagnostic results to the myHR is just stupid, IMHO. I'd like to know what bird-brain thought that this was a good idea. Perhaps the ADHA corporate brain-cell was somewhere else at the time. At a corporate function perhaps.
Diagnostic results need to be interpreted by the health professional who ordered them. The same test result for two people could mean different things depending upon the unique set of health indicators and factors associated with each individual. That's why we have a GP - to help manage this stuff and interpret it.
This seems obvious to me and I am not a health professional.
There is a real danger that these results could be misinterpreted. As such, it adds weight to my opinion that the myHR is clinically unsafe and should be discontinued IMMEDIATELY.
Rant ends.
"This seems obvious to me and I am not a health professional."
Neither were the bird brains who cooked up this simplistic scheme, but it wasn't obvious to them. Rather says it all.
The PCEHR was dreamed up by people in the Department of Health and their management consultant advisers - all of whom are off somewhere else, probably doing more damage.
Timmy didn't dream this thing up, but neither did he understand the train wreck that it is. He's now off spreading the virus. A bit like Covid-19
I don't think that this is that obvious at all. In some countries, lab/path/imaging reports are sent to the patient first as a matter of course, and they can't imagine imposing an intermediary on that to waste every one's time - very unsafe. In other countries, exactly the opposite applies. This calls for some good research.
Dave DeBronkhart is publishing a book full of examples of people how transformed their lives or improved their health because they got access to their own healthcare information - including diagnostic reports. They did not need a medical degree to do this.
For me, this is not a bird brained idea. OTOH, One might raise issues with execution.
Nobody suggested not sending the results to the patient either first or at all. Many path labs in Australia already make their results available on their own website - nothing to do with MyHR.
The suggestion is that a) you need context and b) you need expertise. Some patients might have both, but very few do. To build a national system assuming all patient do is silly.
And as for "other countries do it, why mot Australia?" Yes - "This calls for some good research". It would have been a good idea to do that sort of research before building a $2billion monolith.
The "build it and they will come" strategy has failed miserably.
As Stephen Hawkins noted (in a quote that’s also been attributed to Daniel Boorstin, Librarian of the U.S. Congress), “The greatest enemy of knowledge is not ignorance; it is the illusion of knowledge.”
For Information:
I just had an ultrasound. The imaging company makes the results available on-line via their website. This is the first thing they say in the report:
"You should always seek your results directly from your doctor as they are in the best position to interpret and explain the results to you."
..... and what level of security do you have to go through Bernard to access the report?
I have an account so I can see all the tests done by that lab - they have a number of testing locations.
The first time, I got a link which let me create an account that uses simple UserID/Password
@3:20 PM That all sounds eminently reasonable. It makes one wonder what value is the My Health Record. Although, if your imaging and pathology results were all in the one place, like the MyHR, instead of being distributed across various providers' systems surely that would be more convenient and useful for everyone, doctors and patients, rather than having to dig around in different systems! Wouldn't you agree?
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