Sunday, July 28, 2013

I Am Not Sure DoHA And NEHTA Have Thought Through Pathology And Radiology Results In The NEHRS / PCEHR.

A week or so ago Tanya Plibersek announced the spending of some $8M on the following.

Pathology and Diagnostic Imaging Results to be Added to eHealth Records

17 July 2013
Patients will soon be able to have pathology and diagnostic imaging results uploaded to their eHealth records thanks to an $8 million Federal Government investment.
The Minister for Health, Tanya Plibersek, said it will mean things like a patient’s blood test and x-ray results could be stored securely online as part of their own personal eHealth record.
“This is a landmark next step in the evolution of the Government’s national eHealth records system,” Ms Plibersek said.
“We expect both doctors and patients will find the new functionality useful, as it will reduce the need for them to chase down results or duplicate tests.
“In an emergency, having this kind of information on a patient’s eHealth record could save lives.”
Both patients and healthcare professionals will be able to access results uploaded to a record.
“The $8 million investment includes funding for planning and design work associated with upgrading medical software used by doctors so results can be downloaded or uploaded at the click of a button,” Ms Plibersek said.
“This work will pave the way for x-ray and MRI images themselves to be stored on a patient’s eHealth record in the future.
…..
The new functionality is expected to roll out in the first half of 2014.
The full spin laden release is found here:
At present pathology and radiology results go to the doctor of the patient who requested the tests be done (often electronically - especially in pathology) where they are reviewed and then discussed with the patient on their next visit or by phone if some more urgent action is required.
Thus what cannot happen is that any results go via any path into the PCEHR other than after clinician review and discussion. If they do then we can all see what will happen. Patients will read results - see something that concerns them - whether it should or not - and be calling, e-mailing or whatever anxious and concerned.
We are also going to have the anxious types worrying when they don’t need to if it takes longer than a day or so to be able to see their results in their PCEHR.
What we get by offering this is anxious patients and harassed clinicians who will have their usual workflows interrupted and worse then have to spend time closely reviewing results to make sure there are no contents in the report the patient does not want on their PCEHR. This says nothing of the time needed to locate if each patient with some results has a PCEHR, wants the information sent and getting consent to do so!
Of course we also know the pathology and radiology providers are also aware that their results are a professional opinion - usually with some interpretation - and they are also going to be concerned about results being misunderstood etc. with possible liability issues etc. to say nothing about consent issues.
The most innocuous test can pin-point a diagnosis the patient may not want disclosed. Examples include measurements of Serum Lithium (points to serious mental illness) and various drug levels that point to Epilepsy or even a blood sugar that may reveal diabetes.
To me this is a feel good announcement made by a Minister at an e-Health Conference way before any careful discussion with clinician groups has been had. All them would have made it very clear that there are all sorts of traps for the unwary in making this initiative work properly. The technology is the very least of it!
David.

15 comments:

  1. “The $8 million investment includes funding for planning and design work associated with upgrading medical software used by doctors so results can be downloaded or uploaded at the click of a button,” Ms Plibersek said."…
    Sounds like the GP might be the one that uploads the results, and presumably only if they think it is Ok and have consulted with the patient? If so, then is the GP also responsible for updating the PCEHR if there are any changes/updates to the result (e.g. the final result, or a changed result)?

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  2. David, against the problems of patient anxiety and mi-interpretation is the fact that many patients are properly aware of the significance of their results, but suffer adverse outcomes or die waiting for their provider to have time to review the results. For this reason, some US providers give their patients access to results directly, and choose to wear the process consequences of this that you describe in order to get better overall outcomes.

    As usual, which is clinically safer is not obvious.

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  3. I feel so much better that you are going to protect me from the data and not waste time educating me.

    But can you tell me who the 'diagnosis' of diabetes etc is going to be 'disclosed to' via my PCEHR?

    Perhaps is the the diagnosis of being overly anxious that I need protecting from.

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  4. My point is that putting results into the PCEHR requires clinician management with patient. That takes time and cost that needs to be considered.

    Also, as Grahame points out, no-one knows the patient safety impact.

    Your best education is likely to come from your clinician - not from Google having read a result.

    Once in the PCEHR any information will be disclosed to anyone with access - including a wide range of health professionals who you may or may not want to know a particular result. Segregation of individual results will probably not happen.

    David.

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  5. "as Grahame points out, no-one knows the patient safety impact"

    I think this is a mis-quote. I said it's not clear, but this is not quite the same as "no one knows". I guess it's a matter of spin, but I'm sensitive to being mis-represented on this issue.

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  6. Sorry Grahame, didn't mean to verbal you. I believe the answer is no one knows the risk / reward of just making them available to patient without clinician involvement and availability.

    David.

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  7. I have often had patients with extreme anxiety when they have read X-Ray reports and misinterpreted a large cyst as something terrible. Histology reports take even more interpretation and it is vital that patient results go via the ordering doctor, rather than directly into the PCEHR. (If it ever gets off the ground)

    It's inappropriate to send a result ordered by a doctor directly to a patient and I would hope that the government is not planning this as its outrageous to interfere with clinical care in this manner.

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  8. From a patient's perspective, this is MY data. I pay for the tests, go to the Lab and give blood where necessary. Therfore I the expect to see the results. Fortunately, in NZ primary care, these are now sent to me directly via the Manage My Health portal which saves me the task of phoning the practice and asking the nurse. I would then expect further contact if there were significant abnormalities, and/or be able to query anything by Email. This is a refereshing change for someone whose first 35 years of medical history probably ended up in a UK incenerator!

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  9. Andrew McIntyre writes "its outrageous to interfere with clinical care in this manner". Well I say to Andrew that it's outrageous NOT to interfere with clinical care in this manner. We should be trying to improve care, not continue to lock Australia into the old paternalistic model that is flawed. Look at the evidence. Look at those countries, such as France, where for many years, the results go directly to the patient. Look at the results of the OpenNotes project. Go and read and then reread ePatient Dave's "Let Patients Help". You seem to imply that clinicians always know best and always get things right. Well just in the world of cancer patients' journeys, the times that stuff-ups occur and patients' lives are shortened continues to surprise me, almost on a weekly basis. Simply providing test results to patients directly would almost definitely save lives, save the community money and have many other advantages for our health and wellbeing.

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  10. Hi Eric,

    No one is saying patients should not have their results - but many of us want to see them first so patients are not unreasonably alarmed or concerned.

    Clearly there are situations where tracking investigations are being done that this may be acceptable, indeed even desirable, but this should be access provided in discussion with their doctor in my view.

    I am sure others will disagree but having seen examples where results were seriously misunderstood this is my view.

    My sense is that clinical professionals have a role and purpose and should remain playing those roles for most patients.

    David.

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  11. "many of us want to see them first so patients are not unreasonably alarmed or concerned"

    David, do you acknowledge that patients die while waiting for the provider to find the time to see them first?

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  12. "David, do you acknowledge that patients die while waiting for the provider to find the time to see them first?"

    And when did you stop beating your wife? :-).

    David.

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  13. I think the electronic delivery of results to providers and the quality of those results could do with a lot of improvement and I certainly hear a lot of Paternalistic comments from e-Health people without any real progress on the usefulness of eHealth to providers and having failed providers you want to bypass the people who eHealth was designed to help?? I am not opposed to patients having access to results, after the primary purpose has been accomplished. ie Top quality presentation and delivery of results to providers.

    While I am sure the lack of attention to results has cost lives I am willing to suggest that the lack of timely delivery and poor presentation of results has been a bigger factor.

    I am sure most patients would expect that the highest priority was on getting results into the hands of their doctor. I know we live in a "selfy" world but it seems that we are missing the elephant in the room. Providers need better quality applications and data.

    We also need more that anecdotes.

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  14. All this discussion/arguing about who should see what health information and when just highlights some of the outstanding information system issues.

    IMHO, these should have been at least identified, if not sorted out, and a strategy for resolving remaining and/or future issues been developed and agreed.

    This should all have been completed well before any IT system was even contemplated, let alone implemented.

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  15. Perhaps a compromise. When a GP requests a pathology test, the GP and the patient could consider together whether a copy of the results should go to the patient's PCEHR before the GP may have a chance of viewing them. Patients are becoming more literate and in many cases taking an interest in their own condition is a positive thing. It might be very useful for people managing chronic diseases when they know what to look for in terms of normal ranges or cumulative reporting. Of course there will always be the more difficult problems - like the cancer diagnosis, and perhaps these cases are best handled by viewing the results together with a clinician and planning the next steps.
    There is no doubt that these days, patients themselves must take on more of a proactive project management role when tackling an illness or condition like cancer.
    My question is - if pathologists and radiologists can post results to the PCEHR, then will they (and their staff) also be able to view my record?

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