Wednesday, August 29, 2018

The #MyHealthRecord Is A Total Failure As A Useful Clinical System And This Proves It!


Bernard Robertson-Dunn posted this a day or so ago:
Shared Health Summaries uploaded per day, week ending:
 8-Jul 2,469
22-Jul 3,005
29-Jul 2,990
 5-Aug 2,805
12-Aug 2,169  
19-Aug 2,181
Notes:
- The end of July was the cut-off for an ePIP reporting period, hence the peak.
- The figure for 19 August was lower than any figure for a year, with the exception of 7 Jan 2018 which is - always low because of Christmas.
All that publicity and an increased number of registrations and the number of SHS uploaded isn't rising as you might expect.
----- End Quote
I thought the figures needed a little context – So I went to the Aust. Institute of Health And Welfare:
Here is what I found:
2016 figures:

An average day in health care

Australia's health system is a complex network of public and private services and providers. On an average day in Australia there are:
616,000 subsidised prescriptions dispensed
381,000 visits to a general practitioner (GP)
246,000 pathology tests
Here is the link:
Since there is no way to update a Shared Health Summary (SHS), other than a full upload, we see that 2200 or so are presently being uploaded per day out of what will now be about 400,000 GP visits per day.
This means that each day about 1 in 182 GP consultations is getting a SHS upload and about 181 are not!
Looked at another way – at the rate of SHSs being uploaded – with 6.069 Million Registered Patients – it will take over 5.5 years to give everyone presently registered a current record and close to 4 years to catch up with the 4-5 million ‘zombie accounts’ that are simply inactive except for being loaded with PBS and MBS data. Their owners mostly never go near them and the suggestion the myHR has  six million  users (as opposed to registrants) is a just bare-faced lie! Again no figures on how often the system is looked up to find some information. It isn’t high you can be sure or we would be being told all about it….
The figures just continue to tell us this is a dud.
The latest poll of clinicians suggests the same:

Poll – August 26, 2018 Status

My Health Record: staying in or opting out?
  • Opting out (70%, 133 Votes)
  • Staying in (30%, 56 Votes)
Total Voters: 189
The link is:
So few docs are using the myHR and it seems fewer plan to join. No clinical system will work with this level of abstention!
I hope it gets killed off in the present Government madness before more millions are wasted.
David.

26 comments:

  1. Thanks David surely this level of clarity must be understood by even those most Debbie member of parliament.

    For today’s riddle I invite readers to the latest from the ADHA Software Developer Community Announcement. Look at the changes (out of the blue) for referrals.

    I hope the Board is taking note.

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  2. Thanks @4:50 PM. It is a complicated release note and seems to say that MyHR is not supporting referrals? To save people having to login or register

    Referral v2.0 supersedes and replaces the previous release eReferral v1.4.1. This release introduces a new clinical document specification - Service Referral v1.1 - which replaces previous eReferral clinical document specifications. The previous eReferral clinical document specifications were constrained to supporting referrals from a General Practitioner to a private specialist. Referrals to public hospitals, allied health providers or human services providers were not supported. The Service Referral v1.1 specifications expand this scope of use to include any referrals for healthcare or human services. Note that this does not include requesting medications or requesting diagnostic investigations.

    There is currently no timeframe for the My Health Record to accept Service Referral v1.1 documents. Service Referral v1.1 is primarily for point-to-point use. The My Health Record continues to accept eReferrals in accordance with end product version v1.4.1, but there are no plans to further develop these eReferral specifications. Implementers are encouraged to transition to the use of service referrals for point-to-point use.

    Compatibility with existing implementations
    Existing implementations of eReferral will need to be modified to be able to create and send Service Referrals.
    Existing implementations of eReferral that only process headers and section text should be able to receive and render service referrals without modification, although testing of individual implementations should occur to verify this.
    Existing implementations that process section entries will need to be modified to be able to process Service Referrals.

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  3. Dr Ian ColcloughAugust 29, 2018 9:28 PM

    Perhaps 7:58 PM or the ADHA would be kind enough to summarise this rather convoluted Release Note into, 10 or less, succinct, intelligible, one-line bullet points.

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  4. Here is one suggested summary of the Release Note in just 4 points.

    1. We think we may have messed up with the original ‘eReferral document’. No one knew what it was for, including us, and thus it hasn’t been used, except for 13 instances which are actually the result of live testing by ADHA on the My Health Record Production system.
    2. We were never sure what the ‘e’ at the front meant. The other documents don’t have an ‘e’ stuck at the front, e.g. eShared health summary?, eDischarge summary?
    3. So to save face, we have created a replacement, the ‘Service Referral’ document which can be used for referring anything you like to anything you like. E.g. you can use it to refer to your local pizza delivery service, or to refer to your mother in law (mind your language for that one). But please note: don’t use it for electronic point to point referral to health-related services like medications or XRAYS. For these services, you obviously need to fax a referral.
    4. Oh, and don’t think you can add a new Service Referral document to the My Health Record system. Doctors don’t want to know about your pizza order or your mother in law!

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  5. As for few doctors using MyHR or planning to, I have it on good authority that nurses don't think anything of it either and are opting-out.

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  6. 7:58 PM has basically posted a direct transcript from the web page. My take on this is

    ADHA no longer supports pre-existing Referral specifications or conformance requirements
    The new referral specification accommodates additional use cases
    The MyHR use case is not supported and the MyHR system will not validate the new referrals as such will not be included in citizens health records held by government.

    I can only assume this has been done in broad consultation with MSIA, peak bodies and colleges and other stakeholders. Co-design = co-conspiracy
    It would also appear the point-to-point world lives in a different universe to MyHR, which could be read as the ADHA seems split at at odds with itself.

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  7. The ADHA might want to update their MYER website, the information regarding referrals is in contradiction to this release note.

    Those figures posted David are of great value thank you for the research and posting.

    I agree with the comment regarding Nurses, I only know a handful but none actually see much value, one did comment that the use of CIS has improved the readability of doctors notes, but the MyHR is a bit out of their sphere of thought or care.

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  8. In over 15 years working with health IT in private, state and Federal efforts I have to admit the ADHA and current attempts to find a use for MyHR, is by far the most soul destroying, from policy to planning and management to communications and technical, I am struggle to find anything that is working.

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  9. @10:21. Perhaps it is a case of - we are no longer able to understand or change existing specifications so we are throwing something new out there is hope.

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  10. This is not a short article but we are getting international coverage. Well done Tim

    https://slate.com/technology/2018/08/how-australias-my-health-record-program-became-opt-out-violating-citizens-privacy.html

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  11. Well done Tim indeed, this has proven to be a complete hash, the CEO failed and should now be replaced along with many others.

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  12. @ 8.01 AM simply "replacing the CEO along with many others" does nothing to address the deep-seated problems of this $2 billion failed project.

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  13. @11:45, it could be argued retaining them adds no value

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  14. Personally I don’t like to see people loose their jobs, however the situation is far from acceptable. The MYHR has proved to have been based on a self belief that experts were surplus to requirements and the public and professions are nothing more than data points. The Strategy has left many scratching their heads as it misses tackling the risks and challenges, taking the airline magazine approach. The community is not harmonious but rather more fragmented than ever with an emergence cult like circle screaming blasphemy at anyone who questions their god, even the press have been openly attacked and issued with legal gages. I hear this is also been the case for staff leaving.
    The CEO and COO have it seems been negligent in their tenure of making a cohesive and happy workplace. The Board, CEO and COO have broken the commitment to be open and transparent, in fact they make their predecessors look generous with detail and engaging.

    So we have a broken system, broken community, broken organisation, broken commitments and broken trust.

    Apart from that everything seems rosy

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  15. Well at least they are all still working at it. I would be disappointed if they had disappeared overseas for some “important conference”

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  16. Frankly, I would prefer if they just stop it - and stay at home...

    David.

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  17. They say the simplest strategy is the best. Well said David

    @1:51. Can’t argue with your points. You would almost think the job was to trash MyHR and ADHA.

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  18. I have recently attended a teleconference about a project to improve the quality of the messaging content which involved Department of Health. I pointed out the biggest barrier to making the messages better and compliant was the lack of quality assurance/compliance testing on receivers software, which meant it was impossible to send a high quality message and have it received reliably.

    The departments response was that that would have to be a future project as they were only interested in the My Health Record upload. The clinical care of the patient needs to be the number one priority, the My Health Record is trying to be the only game in town, which is against the interests of patients, they need their doctors to reliably receive the results as first priority surely! My Health Record is an oxygen thief, that needs to be put down. We have already seen Standards Australia process white anted and ADHA shut down their standards division. I do not think this is accidental, when faced with actual users rejecting their solution the response is to try and destroy the eHealth that is working and could easily be improved with some light touch governance. Its not going to end well when you consider what would happen if we did actually manage to upload every pathology result in real time. That is a Census level challenge, and all we have for it (and the future expense to make it cope with this load 24/7/365) is an opaque pdf image of reports that could have been produced by scanning reports 2 decades ago.

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  19. It is pleasing to hear people such as yourself Andrew are still permitted to participate. It is less than pleasing to see that at the federal level do not grasp a federated model. They can wish for an alternative reality all they want but the fact remains. Centralised database in a federate model does not and has never worked. The wave of options entering the market will simply make the MyHR redundant. The approach from Apple is a good example.

    As you point out the victims in all this is the patient, I would prefer to see communications between those directly involved in my care work rather than some entity so far removed from my needs take priority. The are taking us in a direction where preventive care is akin to preventing care equally to all Australians.

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  20. You may well be right Andrew, I certainly cannot accesses any specifications today and when I email people at ADHA they are either bouncing or the recipient has largely not received them. Hopefully they do better with a national system containing personal health information.

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  21. Hi, my name is Dr Bob Walker and I am a GP working in Lindisfarne, Tasmania but I also run student clinics in our local Y11/Y12 State Co-Ed College. Over the last 10 years these Clinics have been highly successful and we have had thousands of consultations providing non judgmental, evidence based advice in strictly confidential surroundings. Our Clinics are easy access/drop in and all students are bulk billed. The local path lab provide bulk billed tests and we record and prescribe using our practice software. In this time we have clearly dropped the pregnancy rate, significantly limited the spread of sexually transmitted diseases (STDs) and done a lot of good mental health work. Not one of the students who have engaged with us in this time have taken their lives.

    However, the arrival of My health Record (MHR)is a total disaster as our Clinics will be a lot harder to run. After a lot of soul searching we plan to close our Clinics on 15 November - a very backward step for youth health. About 15% of our young patients have a MHR, presumably enrolled by their parents and almost all without their knowledge. These students are really distressed by having a MHR and now worry about their confidentiality. If we do not tick a box on our path referrals to avoid results going onto their MHR, parents and others can see the results of STD and HIV screens. If a pharmacist slips up and fails to block a dispensing activity, scripts for contraceptives and medications for STDs are also visible. All Medicare items numbers including the names and locations of doctors, all path results and all scripts appear on these records up to the age of 14yrs. Medicare limits these flows between 14 and 18yrs unless we slip up as mentioned. However, Health Summaries, with explosive diagnoses can be uploaded by hurried/unthinking providers for all age groups. After 18yrs, all new data uploads is clearly visible to home viewers. The ADHA proudly states that young people can take over their records and limit access but this is easier said than done and our students (and quite tech savvy ones, too) have found this quite difficult. Also, parents can put pressure on their teens to open up a private record and if they do not comply, suspicions and arguments arise. As doctors we have all had cases where a young person would have been seriously injured, made homeless or possibly suicided had details of their medical record been seen by others. Doctors will now become targets even though we are treating mature minors and only working in their best interest and safety. I am saddened by the lack of consultation by the ADHA with us youth health workers. The support of MHR from the AMA and the Royal Australian College of GPs is not based on a sound knowledge of how young people interact with our health system. As a GP, I can see the benefit of a well maintained, up to date and accurate MHY for older people and other patients with complex health conditions, multiple medications, serious allergies, drug addictions and complex psychiatric illnesses. However the risks to young people far outweigh the advantages of the current 'Opt Out' System. There has to be a better way and I hope the forthcoming Senate Enquiry will recommend a modified 'Opt In' system and spare our young people from what is now a cruel cyber threat to their wellbeing. If anyone reading this can influence Government policy at this critical time, your action will be much appreciated by young Australians.

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  22. Dr Bob,

    My suggestion is that you do a cut and paste into a word document, save it as pdf and it to the Senate Inquiry:

    https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/MyHealthRecordsystemsubmitt

    Your front-line, point-of-care experience should trump any of the spin and rhetoric coming from the likes of the government, AMA and RACGP.

    If there is even the slightest risk an opt-out MyHR could kill young people, the move to opt-out should not proceed. Your experience strongly suggests that there is more than a slight risk, especially if taken across all students in Australia.

    The problem the government now has is this:

    If your clinic closes there is a risk some students might die.

    If your clinic doesn't close there is a risk some students might die.

    Stopping the opt-out process is the only short term option.

    The Dep Health/NEHTA/ADHA/ really haven't thought this thing through. Even with opt-in, there is still a risk of harm.

    The only longer term option is for a proper review of the system, its objectives, risks, implementation, impact on Australian health care, value, projected costs over the next 100 years and alternative approaches should be conducted by a body independent of the ADHA, the Department of Health, or any other participant with a vested interest in its outcome.

    The only sensible outcome of such a review is likely to be to abandon the system.

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  23. Dr Bob, I would agree with Bernard, this puts your valuable contribution in the public domain, is then a public record and protected by numerous Acts. It then must be read, once read it cannot be un-read and then we all share in the responsibility and are accountable.

    I would also like to thanks you and your colleagues for the work you do.

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  24. Dr Bob Walker, that is a story that is deeply concerning. The closure of critical but often not well known of understood services is a real problem. The protections harm the Government might be introducing really needs to be weighed up against today’s landscape. Do we really need a large warehouse of files, how does a centralised solution for a distributed business problem work?

    We might better spend resources addressing funding for people focused services. We need to go back to the basics rather than putting all the misguided hopes and dreams in the MyHR experiment. Similar shared records adventures have been the downfall of many international govt investments.

    The tools that can be championed IMHO should be standards based and conformant medications exchange, diagnostics exchange, pathology exchange, as has been said (and largely paid lip service to) get these right and then you can use a virtual health record to link them together. There is little understanding of what the strategic intent is of the MyHR in terms of clinical business models, consumer models, etc etc..... no use case or paid story I have seen from ADHA around the MyHR can be solely solved by the MyHR

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  25. how does a centralised solution for a distributed business problem work?

    @7:57 AM, great question, perhaps the senate enquirer members could answer that one for us.

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  26. One implication of optout is that there must be at least 50 or so contractors dedicated to optout just at ADHA, so instead of winding up in October is time for that “pre-Christmas” contract window, the ADHA will need to extend the contacts. So either contracts are extended out to end of January 2019, which at say $1000 per day is over $ 3,000,000 in unexpected cost, or they could extend for a month and risk a large pool leaving, taking that experience with them.

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