Is Consent a moral dilemma or a mere medicolegal formality ?


Doctors, and specifically GPs, have for many decades considered the concept of Informed Consent an integral and mandatory part of the interactions with their patients.

ACT Health defines Informed consent as follows:

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In addition there were some very specific rules that applied to the requesting of any investigations one of which was that patients were not allowed to alter/delete/modify anything on an investigation request  after it was given to them by their GP.

Any alteration, if any, was done by the doctor and the pathology or imaging facilities would typically query any handwritten changes made by someone on a form.

This was both to make sure that the patient did not add a Naturopath’s request for serum rhubarb to the tests requested by their GP and also to make sure that the funding instructions by the GP (Medicare vs private) was not altered.

The roll-out of the MyHealthRecord system has however

greatly changed the groundrules.

These issues will become crucial once the opt-out period has been completed and a large number of Australians suddenly find themselves having a MyHealthRecord with or without their knowledge or input.

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The single biggest change is the replacement of the principle of

Informed Consent 

by one known as

Standing Consent.

The Australian Digital Health Authority summarises these changes as follows:

  1. There is NO requirement for a GP to obtain consent prior to uploading clinical information
  2. There is NO requirement to show a patient what is being uploaded
  3. It is considered “good practice” to discuss “sensitive” matters before uploading them

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Rather astonishingly the RACGP does not seem to have problem with this drastic shift in principles:

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It is also interesting to note that none of the major providers of GP desktop software seem to have grasped these important changes. GPs can either upload a “Shared Health Summary” or an “Event Summary” to the MyHeathRecord.

Rather oddly all of the software programs have a statement at the bottom of these documents stating that the GP had prepared the document about to be uploaded in consultation with the patient – which is clearly no longer a legal requirement.

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But wait, there’s more !

Matters become even more complex when one starts considering the matter of uploading of pathology/imaging requests to the MyHealthRecord

  • All the major software providers will upload all investigations request, and associated results, for anyone who has a MyHealthRecord
  • These uploads can be cancelled each time a request is ordered
  • The software default cannot be changed – uploads will happen automatically if no human intervention has happened

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Some providers have already implemented the change and others are in the process of doing it:

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There are several major issues with this part of the changes.

The educational sessions being run by the RACGP go to great pain to advise GPs that the final responsibility to NOT upload a test request/result lies with the patient who is supposed to tick the box prior to handing in the form at the testing facility.

This advice COMPLETELY ignores the massive shift in rules applicable to investigation requests that now considers it as appropriate for a patient to make alterations to a test request that was printed out – even if it is only a cross in a box. It creates a whole new layer of complexity for GPs and pathology/Imaging companies alike

It is certainly correct that this information is provided to the patient on the ADHA website. It is however notable that the matter does not seem to addressed at all in the healthcare provider section of the ADHA website

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Unfortunately this does not tally up with the directives that ADHA has given to software developers,

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nor the advice provided to pathology providers

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Nor for that matter the advice being provided by the person heading the ADHA.

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Even the software providers do not interpret the processes in the way the RACGP does – this is the users guide from the most commonly used Desktop program:

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So where does this all leave the GP when faced with a patient who has a MyHealthRecord ?

It would appear that there are two general directions one could take:

a. The Medicolegal route:

  • Upload Shared Health Summaries/Event Summaries as you see fit without discussing it with anyone
  • Ignore the “do not upload” tickbox when ordering investigations and leave it up to the patient to tick the box if they are so inclined
  • Only discuss a matter with a patient if you consider it to be potentially “sensitive”

b. The Moral route:

  • Only upload Shared Health Summaries/Event Summaries if the patient is with you and has approved everything you are including in the upload
  • Discuss the tickbox with the patient every single time you order an investigation and advise the patient that they can still alter your request form after they leave (not that it helps in-patients who never see the forms)

Sad reality remains that the legal sharks are circling around us waiting for the first of many cases – a fact admitted at meeting after meeting.

The other sad reality is an immense lack of knowledge and the presence of general apathy amongst Doctors and patients about this issue. Something which all the articles and commentaries are not apparently changing.

This entry was posted in Medical ethics, Medical IT, MHR, PCEHR and tagged , . Bookmark the permalink.

7 Responses to Is Consent a moral dilemma or a mere medicolegal formality ?

  1. Sonia Lee says:

    The crux of the matter is making anything ‘standing consent’ without getting ‘informed consent’ to do so is basically side stepping consent altogether. You can not consent to something you don’t know about. For standing consent to be valid, there must first be informed consent for the process and also informed consent for the consent to remain standing. So, basically MHR ‘opt out’ only works if you ignore consent. 😦

    • Thinus says:

      Very true. One of the most frustrating aspects of this whole matter is that one would think every single person in Australia that are able to read or listen to a radio would be all over this issue. Lord knows it has been discussed in the greatest details. Yet we as Clinicians see patients every day who either knows nothing about the system or simply know that it exists without understanding how it works.

      Even more scary is that this same lack of awareness/understanding exists amongst Health Professionals.

      Which suggest nothing good in terms of any “informed” consent to the opt-out process

  2. How about ll the path ordered in tertiary hospitals? Will patients be consented on whether results are to be uploaded?

    • Thinus says:

      True – I alluded to that in the last section – inpatient test request forms very rarely are shown to patients and they most certainly would not get the option to tick that box.

      Ironically here in the only pathology being uploaded at present are on in-patients in our public hospitals.

      Even more ironic is that I have yet to meet an ACT Health Doctor that either knows how to access the system and/or has any intention to do so – sadly this has already led to less than ideal care on patients of mine who does have a Shared health Summary in place that would have been very useful to the treating team

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  5. Heather King says:

    Thanks for this. I can see we’re going to have to keep a close eye on how My Health Records develops. I’m not confident at all that at some point, because I fail to check some obscure check box, a record won’t be created for me, even though I’ve already opted out.

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