The big news of the week was the announcement by the Department of Health and Aged Care of a new consultation on two measures to improve health information sharing in Australia, one covering the removal of the seven-day delay on posting test reports to the My Health Record and the other on mandating uploading results by default.
It’s debatable whether a consultation period on the latter issue is necessary considering the government has very clearly signalled that it is intent on making it so, but debate on the abolition of the seven-day delay is probably a good thing.
The seven-day delay was first introduced as a result of intense bargaining back in the early days of the much-lamented PCEHR – still fondly known as the pecker – and way before pathology or radiology providers even had the slightest notion of how they would interface with the system.
While the pecker’s promoters hoped that test results would flow to the system immediately, it was quite clear there was no way this could be done using the technology the PCEHR was built on. None of the diagnostic providers were even using the Healthcare Identifiers Service, and nor was there any agreement on terminology or standards beyond LOINC codes.
The colleges of pathology and radiology, along with the public and private providers, were utterly aghast at the idea of uninterpreted data being exposed to patients immediately, and insisted that the full report be uploaded rather than just the results. This could only be done as a PDF uploaded in a CDA wrapper and things haven’t changed much since.
They also insisted on a week-long delay so that the requesting doctor had time to receive and read the results and talk to the patient if necessary. There was also a well-founded fear that patients would misinterpret the results and ring their doctor or practice demanding answers.
This has been an issue that continues to hold back information sharing using technology platforms, including the implementation of patient portals. Despite numerous healthcare organisations that use portals – from healthcare homes to public hospitals – reporting that they work perfectly well, there is still a reluctance to release the data too readily.
It’s probably time now to change that. A huge effort has gone into remedying the terminology issues that have plagued the diagnostic sector and almost all providers are now linked to My Health Record. Like other great leaps forward, immediate release of test results was given a boot along by the pandemic, with COVID test results uploaded immediately they were available. Flu results, INR ranges and HbA1c results are also reported immediately.
And a huge amount of work has gone into making the diagnostic sector compatible with new standards and preparing it for interoperability – the new FHIR specifications for eRequesting and the CSIRO’s FHIR accelerator Sparked are incredibly exciting – so now is probably the time to make a change with the seven-day delay. Its time has probably come and gone.
As to sharing information by default? Most of our readers agree with the concept. When we polled this question back in May, following the policy signal in the federal budget, most readers were in favour. We can’t see anything changing this now.
DoHAC says it hopes to legislate for sharing by default next year, with the rule to come into force by December 2024. We doubt there will be the same resistance experienced back in 2014.
That brings us to our poll question for the week:
Should test results be made available on My Health Record as soon as possible?
Vote here and leave your comments below.
Last week we asked: Is healthy funding the key to Sparked’s potential? This was popular with readers: 90 per cent said yes, just 10 per cent said no.
We also asked: What do you hope to see achieved in two years’ time? Here’s what you said.
Should test results be made available on My Health Record as soon as possible? If yes, is it safe? If no, what problems could it cause?
Overwhelmingly, readers said yes: 82 per cent were in favour while 18 per cent were against. Here’s what you said:
– It is safe. We need to give consumers agency and put them in the driver’s seat.
– Patients have a right to know their personal information
– There should be some exceptions but for most timely access helps patients manage ongoing conditions as well as engage in there own health care and be better informed to ask questions
– Many missed opportunities, even when test results are normal sometimes they require a follow-up and tracking
– It puts complex problems into the hands of people who don’t understand them, i.e. the patient themselves
-Yes
– In the vast majority of cases it will be perfectly safe. There will be a small number of use cases, like a cancer diagnosis, where there should be a delay. The idea to remove the delay is not cutting edge in Australia, the ACT has already done this in Australia and there is overwhelmingly positive feedback from patients and healthcare providers.
– It allows patients and families to go in to their appointments well prepared with questions rather than having to process the information on the spot, try to think of questions at the time, then later wishing they had asked something.
– Yes it is safe for most consumers but results documents should include instructions to allow consumers to understand their results.
– Not sharing as soon as possible is also potentially unsafe.
– Possible problems are likely to be associated with poor practitioner-patient relationships or poorly designed information sharing processes and communication systems that are wider systemic issues.
– It’s the patients information. And hopefully this will improve Dr results acknowledge timeliness
– Informed care means explaining to patients why you are doing a test and what might be the result. Safe plan to check the results should also be discussed. It is time to stop being paternalistic
– Patients should have a clinician present when learning their pathology test result to both intetpret the resulta but also provide essential support and follow-up. e.g. a positive cancer maker test or an STI test result should ABSOLUTELY NOT be disclosed to a patient without a clinician being present.
– If MyHR is supposed to be a summary system, why are test results posted at all? Supposing they invalidate the summary? What does that do the the accuracy of the data in the system? The priority of ADHA seems to be to get as much data into MyHR as possible without any regard to its usefulness or reliability. The reality is the more un-curated data in MyHR the less benefit it can deliver. ADHA will probably kill MyHR by making it a white elephant.
– Generally safe. Using generative AI to convert reports to a lower reading level would be good.
– Safer than not sharing results. Much prefer another check and balance for results by the patient.
– Patients discover their bad outcomes without any support people present.
– Misinterpretation if not in context
– My yes vote is on the basis I have a health background and am a very informed healthcare consumer. I proactively manage my health and take an interest in what my test results are. Reassuring to know if they are in the normal range as soon as possible. If not I can make arrangements to return to my GP practice. Also helpful to have the results on MyHR as soon as possible also if care from a different provider is needed before being able to get them from the ordering clinician. But can understand that others may not be able to interpret their results and may be caused concern if not within the normal limits.
Interpreting results requires an experienced clinician. Normal is not always normal and abnormal (such as iron deficiency) doesn’t always just need simple correction (in this case cancer needs exclusion).
– It’s unsafe not to share. Example, high INR, doctor away, gets lost in the wash at the practice, patient not informed.
– Include a generic warning that patients should consult their doctor to understand the results
– Yes
– Many test results are time critical
– Patients have a right to their own health information. Patients will then be able to ask informed questions of their doctors because they will want to know what the numbers mean.
– Medicine has to be less patriarchal and more inclusive of the patient
– Dr Google and patient anxiety
– There could be some problems but with informed consent and a good doctor-patient relationship, most could be solved
– Doctors need to be ready to have a consulation with their patintes to answer questions and discuss results
– What is the gain of immediate availability versus the risk of patients not being provided with counselling and context by their doctors? Immediately availability to healthcare professionals is good and the intent of MHR, but immediate availability to patients via a faceless supporters medium is risky.
– It’s time we acknowledged patient’s as true stakeholders of this information.
– Absolutely. We do need links to https://pathologytestsexplained.org.au/ and the radiology equivalent. Not that many tests bring up unexpectedly bad results. Many “bad” results occur in patients who already know their diagnosis. Let’s get on with it.
– Benefits outweigh risks
– Referring practitioner should have a chance to review and recall patients to discuss results.
– Uploading results immediately – Fantastic for Health Providers. However, this should not be available to patients immediately. Sensititive Tests such as HIV Screening could cause distress to some patients, those results should be communicated by a doctor to provide support upon such news. HIV is easily treatable in today’s society, but considering some older patients, there may still be a stigma attached to it.
– Do not make decisions based on a few possible problems; instead make a plan to deal with them so the greatest majority can benefit from an affirmative decision.
– GPs need time to review
– Safety wise: As long as certain tests that need to be explained/counselled are excluded e.g., Genetic tests for fatal hereditary conditions, Cancer diagnostic tests etc.
Receipt of information without counselling could lead to extreme events like suicides.
– Economic: A lot of GP’s (especially those that bulk bill) rely on the low hanging fruit of forcing people to come get their results from them. This will allow people who can read results, or if all normal, or chronic known conditions, to not have to go to GP’s to get results explained. A drop in low hanging fruit could be another incentive for GP’s to move from bulk billing (those few that remain).
– Yes, it’s my health
– Main thing is we don’t wont s lot of worried well, this is where some rules and AI might be used for certain results
Immediately or as soon as the doctor has reviewed results.
– Way safer than any local medical practice
– Absolutely.
– Research has shown that while there are a small percentage who experience increased worry, particularly when the results were non-normal, the overwhelming majority, prefer to have their results available immediately, even those with non-normal results.
– It is safer to have early access to test results. Problems may exist where tests are for life limiting illnesses and in these cases it would be better to reveive the results directly from a care provider to prevent possible self harm
– Incorrect interpretation by patients who view the results before discussing with Dr
– Entirely safe
– It is safe if framed appropriately. An excellent example of this is how 23andme communicate DNA Health trait results
– There may be issues, such as a patient seeing they have low iron and buying over-the-counter liquid iron supplements and consuming too much – before seeing their GP/prescriber – however, the delays to knowing results is both a psychological stressor and in some cases will delay patient-driven changes in therapy (where their GP has provided instructions on various scenarios).
With other professionals like pharmacists moderating the purchase of some medicines I cannot see a particularly increased risk with earlier result availability to the patient.
– yes
– yes