In the brief statement regarding the Kelsey departure from the ADHA we read the following.
"During [Kelsey's] time, the agency has done much to be proud of, particularly working with stakeholders and the community to provide more than 22 million Australians with an online summary of their key health information through their My Health Record, and to support the introduction of e-prescribing," ADHA said in a statement.”
I think a small fact check of his actual achievements is in order.
In his 3 year tenure.
1. He managed one of the worst Government policy implementations of a major initiative that left 22 million rather startled Australians with an incomplete, unreliable and pretty inaccessible online summary of some of their personal health data.
2. So badly conceived was his plan for ‘opt-out’, and the associated marketing and PR, that 2+million Australians took anxious steps to have nothing to do with the whole #myHealthRecord initiative and an annoyed Government found itself with a pre-election issue that had it badly on the back foot.
3. The statistics regarding the constructive usage of the #myHealthRecord are so poor they are a State Secret reminiscent of ‘on water matters’
4. Despite the 'Axe the Fax' nonsense, faxes are still widely used in the health sector, as a sound alternative is yet to be implemented.
5. As far as I can tell there is yet to be any real improvement in information interoperability in the health sector and any movement has hardly been as a result of his efforts.
6. During his watch has failed to convince clinicians of the utility or most of his initiatives despite desperate attempts to gain compliance with financial incentives etc.
7. He has pretty much single-handedly destroyed, or failed to sustain, the e-Health Standards setting system in Australia.
8. Implementation of Secure Messaging nationally seems to be as far off as ever.
9. He has worked quite hard, behind the scenes, to silence dissenting views and reporting on his activities and caused many journalists, and this blogger, considerable suffering and annoyance.
10. He has turned the concept of ‘co-design’ into a process that asks what stakeholder think and want and then does whatever he wants just ignoring the input as far as most can tell.
11. He has elevated Government spin to an art-form where the particular case suddenly becomes representative of the whole country.
12. E-prescribing is still a remote future as far as any-one can tell – 2-3 years off at least.
13 No-one has seen any real broad based evidence that the #myHealthRecord is making a positive difference for patients or clinicians.
14. The technology on which the system is based is not only insecure according to the ANAO but is also obsolete.
I could go on – as an outsider these 3 years are worth no more than 2/10 to me. The usual disclaimer that these are personal opinions only applies here as with all the blog contents.
Give me your score in a comment please.
David.
43 comments:
It was disappointing how others got caught up in the silly axe the fax stupidity. Certainly eroded reputations. What ADHA really did under Timmy was ‘axe the facts’.
> He has pretty much single-handedly destroyed the e-Health Standards setting system in Australia
It was already destroyed before he arrived - that's not his fault. He just didn't prioritise or succeed at rebuilding it.
adding to his legacy:
The expertise that was transferred from NEHTA to the ADHA has left.
The ADHA has very little, if any, technical expertise that understands how my health record works.
The contractor that built and now operates the my health record knows far more about its weaknesses and failings than anyone at ADHA. The ADHA is shackled to the contractor - the only option is a complete redesign/build/implementation, which of course is prohibitively expensive and politically impossible.
The ADHA believes its own spin and promotes my health record as though the original design has been implemented - which it hasn't.
In his email to staff he said:
I am very proud of what has been collectively achieved:
- Australia has a national digital health strategy which all the governments have agreed;
- The first priority of that strategy - My Health Record - is a world-leading initiative that now provides 90% of Australians with an online summary of their key health information. The ANAO concluded in its recent performance audit that the implementation of this program was both effective and appropriate;
The "national digital health strategy" is being ignored by just about everyone, especially the CSIRO and the new Digital Health Collaborative Research Centre
Compare the CRC website www.digitalhealthcrc.com/ with www.digitalhealth.gov.au
The CRC has more partners than you can poke a stick at. ADHA is in a bubble all of its own.
Tim's right, my health record is a world leading initiative - except it's leading down a blind alley.
The ANAO didn't conclude the implementation of this program was both effective and appropriate; It concluded that the move to opt-out was sort of OK, but there are critical security and privacy risks and failings still to be sorted.
It makes perfect sense for Tim to jump ship just now. My health record has nowhere to go but down.
Tim and the ADHA have set back progress in digital health in Australia by decades and as such only a negative score is appropriate.
"It was already destroyed before he arrived - that's not his fault. He just didn't prioritise or succeed at rebuilding it."
OK - NEHTA started the rot but he totally failed to revive it and make the system for for purpose. A major fail given the importance of Standards I believe.
David.
It's worth having a browse of the DHCRC website www.digitalhealthcrc.com/
A couple of observations:
1. Apart from a mention in the ADHA's bio, myhr is totally ignored.
2. Accenture is not a partner (Deloitte is).
3. there's in interesting paper Flying Blind, volume 1. which focuses on the intricacies of the consumer health journey and reviews how data fragmentation could hinder the development of superior healthcare in Australia.
https://www.digitalhealthcrc.com/wp-content/uploads/2019/10/Flying-Blind-Vol1.pdf
The paper is dated October 2016 but, it's interesting for its coverage of a data fragmentation, a major objective of myhr.
This is from the conclusions:
"In relation to consumer-centric health data usage, we have noted that most attention is focused around the My Health Record initiative. This initiative, now under the stewardship of the recently formed Digital Health Agency, has yet to gain significant traction amongst consumers and health service providers in spite of being underway for almost two decades and incurring very high levels of expenditure.
While national EHR initiatives are seen as a robust approach to supporting consumer-centric healthcare, the Australian solution has had to be engineered around the health service fragmentation, identifier and coding issues as well as actual and perceived legislative and regulatory issues.
The end-result is one that imposes significant overheads on providers and requires a level of active ‘management’ by each consumer. Commentators have noted that tapping into complete, current and ‘fast flowing’ datasets of healthcare providers is an alternative model that delivers more comprehensive and ‘real-time’ benefits to consumers, as well as reducing time, effort and costs for clinicians. This is not to say that best aspects of both could not be brought together"
Apart from myhr not being a national EHR, just a mostly empty husk that doesn't support consumers because of a lack of history, it's a polite way of saying "there are much better solutions"
The DHCRC is where the grownups are working - for a fraction of the cost:
"In April 2018, the Australian Government announced $55 million in funding for the Digital Health Cooperative Research Centre (DHCRC). This grant, covering a seven-year period, came into effect in July 2018."
In comparison the ADHA is like primary school and is costing a fortune.
How many CRCs could be funded if the myhr were cancelled right now?
Such research pays enormous dividends and can result in major economic activities that both improve healthcare and a creates jobs.
Our various Federal governments have had their heads up their collective backsides for decades. We have missed incredible opportunities for genuine world leadership in healthcare and environmental research. We are becoming the laughing stock of the world.
If you look at our iconic symbols, the Sydney Harbour Bridge and the Opera House, these were created in spite of governments, not because of them.
IMHO, the sooner we get rid of Tim, ADHA and myhr the better. They are all a distraction.
I do not think we should blame Tim Kelsey personally for what has or has not happened. Let's remember that he was the third highly educated, well respected (in some circles anyway) person to take on an unachievable mission.
We should look at the strategy as that is where the problem really lies. Tim had the ill-fortune to take on something that was never going to work. It should now be apparent to us that neither Mother Theresa, Winston Churchill, Edmund Hillary, Kevin Rudd or any other heroic figure would be able to do this. It is simply an unachievable goal in its present form.
Before we allow the Government to entice some other well intentioned luminary to leap to their death we should provide some better guidance as to the strategy.
"If you do not know where you are going any road will take you there" - as the rabbit said to Alice. Ever since the now forgotten day that Nicola Roxon uttered those fateful words "We will have a shared record and it will be live by next October" we have been groping our way in the dark. As far as I am aware, the strategy has been based on the same flawed logic that the UK's NPfIT used before it was ignominiously shot (i.e. almost no logic at all).
So we need to look at the evidence of what does and does not work around the world, at what technology is doing and how well our citizenry are likely accept some sharing of their personal data and come up with another plan entirely. A review of international evidence would reveal that there are indeed some clues.
Anyone keen to work together on this?
Kind regards,
Tom
Now we must
Tom,
These are worthy thoughts and worth consideration.
I told Tim K 3 years ago the #myHR was fatally flawed, as was a lot else of what the ADHA planned.
I was told essentially to 'go away you stupid boy, we know better'. Recently ADHA staff were even blocked from reading what I wrote at work!
We have now wasted three more years on hubris and even worse, spin, personal villification and obfuscation.
I am pretty certain I know who led this effort so I will stick with saying the last 3 years have been a failure IMVHO.
Can we do better in the future? I sure hope so - without spin, secrecy and deception and based on some actual evidence!
David.
@tom, appreciate your sentiments. However you never worked under his oppressive dictatorship.
I agree totally with David's comments.
I went to see Tim shortly after he took up the CEO position and offered to help. My message was "This is too serious to fail". He had no idea what I was talking about when I suggested that the future of healthcare was in the sort of data that never gets into a myhr.
Hubris is no excuse. The fact that he did not know or understand what was (and still is) wrong with myhr but had the arrogance to plough ahead regardless has resulted in a huge waste of money and opportunity. Tim may be highly educated but he didn't know enough to know he was wrong. In fact he probably thinks he's completely right hence his reported dictatorial approach to management.
Re Tom's "Before we allow the Government to entice some other well intentioned luminary to leap to their death we should provide some better guidance as to the strategy."
How about we start with a basic assumption - that Digital Health can improved healthcare - specifically the practice of clinical medic9ine.
The HISA is promoting a paper "What is digital health? And why does it matter?"
https://www.hisa.org.au/wp-content/uploads/2019/12/What_is_Digital_Health.pdf
Clinical medicine has two basic processes - diagnosis and treatment, both based upon evidence based medicine.
The are many problems with diagnosis processes - in 2015 the Institute of Medicine produced a whole book on the subject "Improving Diagnosis in Health Care" it's more than 450 pages.
There are many problems with treatment in many cases it's a question of trial and error, problems with drug efficacy and interactions.
And Evidence Based Medicine is full of biases and flawed research.
What does the HISA paper have to say about diagnosis, treatment and evidence based medicine?
Virtually nothing.
The word "diagnosis" appears once; "treatment" twice; and "evidence" zero.
As tom so rightly quotes "If you do not know where you are going any road will take you there"
The paper has been written from an economics and computer science perspective. Tim is a historian and journalist. The health minister is a lawyer. The guy who headed up eHealth in the Department of health that kicked a lot of this off was a small scale IT project manager. The head of NEHTA had a degree in business management and a Grad Dip in computing.
What's the common theme? None of these people understand anything about clinical medicine - the heart of healthcare.
Until you involve the people who are knowledgeable in clinical medicine, medical science and those who understand what to takes to transform existing processes, you won't know where you are going.
The most important guidance is to involve people (or leave it to people) who can understand the real problems of healthcare and help create effective solutions. Starting with solutions (as do Digital Health evangelists - the solution is IT) will always end up in the wrong place - and not know it.
The national eHealth agenda has always ignored making the low level clinicians job easier and that is where the value lies in improving outcomes. Better quality of results, cumulative reporting, easy, rapid transfer of results without loss of atomic data. These are the building blocks of better quality health care. Building castles in the air only works in disney movies and we have wasted $2Billion while the data quality actually goes downhill.
There was a recent decision to name most biochemistry results "Common Chemistry" so they would all line up using the text description in MyHR. It would also mean finding a specific biochem result in an EHR would be more difficult. Just keep dumbing it down until its all uniformly bad seems to be the ADHA standardization push. Yes its standard terrible!
There can be no argument, there are multiple opportunities for improvement.
I fully support your comments Andrew. Like you I despair of ever getting anywhere with message exchange, simply because of a complete lack of standardisation at a basic level. No-one (except you and others like you) want to do the hard stuff everyone wants to pick the "low hanging fruit" - extending that analogy, the low hanging fruit can be rotten.
A number of countries and jurisdictions have been mesmerised by the possibilities of a single longitudinal patient record which all healthcare providers and even their patients can share at will.
I trace that notion back to the RAND Corporation report of 2005 (RAND is a high level US think tank). The justification within it was used to justify the meaningful use programme and similar logic applied to the NPfIT (UK).
That report "Health Information Technology - Can HIT Lower Costs and Improve Quality?" concluded that properly implemented and widely adopted HIT could yield savings of more than $81 billion annually.
Such is the kudos of RAND and its researchers that governments around the world immediately calculated the savings they could make and promoted 'a national health records system' as a key strategy plank.
There was just one little (very large) problem; no-one had figured out how these savings could be achieved. RAND was long on big ideas but very short on detail. The basic idea they promoted was 'build a single record for every patient and let all healthcare provider organisations share it.'
Following this earth shattering revelation, the government of nearly every OECD country put a bunch of bureaucrats in charge of automating their health systems and gave them the cheque book.
Roll on to 2013 and another RAND report was published in 'Health Affairs' It was titled "What it Will Take to Achieve the As-Yet-Unfulfilled Promises of Health Information Technology?
This new report talked about the 'disappointing results', 'sluggish adoption' and the quality and efficiency of patient care being 'only marginally better'. it concluded that non-technology issues such as incentives, funding frameworks were the problem.
And so we can see that the Australian government is not the only one to have thrown good money after bad, gained few if any tangible results and at great opportunity cost, stuck on the side of the road with two flat tyres.
However this needs to stop now. It is time that we (and I mean we, the few people that actually understand it) to band together to sort things out.
And so....a starter for ten.... with a clean slate how would you approach it(harnessing IT to improve healthcare).
I look forward to your views and then replying with some of my own.
Kind regards
Tom
Tom to be fair to RAND, (although they were very naive) the real claims started much earlier. They were being made in earnest by 1991.
In 2001 there was a report "Crossing the Quality Chasm: A New Health System for the 21st Century: from the Committee on Quality of Health Care in America, Institute of Medicine.
It said:
"Both private- and public-sector groups have identified the need to move forward expeditiously with the automation of clinical information.
In 1991, the IOM issued a report concluding that computer-based patient records are an “essential technology” for health care and that electronic records should be the standard for medical and all other records related to health care. In that same year, the U.S. General Accounting Office issued a report stating that automated medical records offer great potential to improve patient care, increase efficiency, and reduce costs, and calling for the development of standards to ensure uniform electronic recording and transmission of medical information.
A 1993 report of the U.S. General Accounting Office called for leadership and the acceleration of efforts to develop standards.
In 1997, a revised edition of the 1991 IOM report noted the strides that had been made in the power and capacity of personal computers and other computer-based technologies, the remarkable growth of the Internet for research and some health applications, the increasing level of computer literacy among health professionals and the public, and the linkage of organizations and individuals in local and regional networks that were beginning to tackle the development of population databases."
Does any of this sound familiar?
If I could suggest, the real question is: Why have the many previous attempts to apply IT to healthcare not succeeded?
If we understood that, we might not make the same mistakes.
Bernard is asking the most fundamental question - Why have the many previous attempts to apply IT to healthcare not succeeded?"
I presume this is being asked in regards to attempts to develop a shared, interoperable, electronic health record.
At the risk of being pedantic it should be acknowledged that there are plenty of examples of successful IT applications beyond that domain.
Back to Berbard's question. WHY have so many previous attempts failed. It is pointless moving to the next step until this question is thoroughly analysed and answered - objectively and honestly. Few bureaucrats, politicians, vendors and consultants are prepared to accept that challenge.
The reason for the failures is the almost total lack of root cause analysis for every failure of interoperability. This analysis is vital if any progress is going to be made and it involves getting down to the bit level of messages to identify the exact error(s) that caused the failure.
If this was done we would have a huge list of failings in software packages that make interoperability unreliable at best and in reality plain dangerous when dealing with vital clinical data. Medical-Objects has these lists and has tried to include the most common mistakes into the new hl7 standards as compliance points, but no one even tries to comply with standards as there is no requirement to do so.
NEHTA/ADHA don't even understand the concept, let alone have the technical ability to do this and try and manage it by press release and glossy powerpoint presentations promising everything will be working by next xxxx and of course this has been going on for over a decade and if anything the technical people who do understand get fed up and leave and we are left with the cargo cult version of eHealth which sort of looks like the real thing but scratch the surface and you realize its a mock up. Lab messages are getting worse rather than better as their technical staff have drifted away and PMS packages don't want to invest in difficult, low level work that has little end user selling points.
Until we get a technically competent person in charge, who doesn't do anything other than identify root causes and insist they be fixed because lives depend on it we will just have more of the same BS we have seen. The ADHA is one of the best examples of a cargo cult around and their cargo will never land because they are 2 orders of magnitude away from a technical understanding of the problem.
David, Bernard, Andrew and Ian, I agree with all of you.
There clearly have been successes but I believe that the conversations we need to have right now are "how to fix secure messaging?" and "whether and how to share patient records" - i.e. what to do with the My Health Record problem child?
Andrew is totally right about messaging, no question whatsoever and unless we can convince everyone involved that those matters must be addressed, we do not have a hope of moving forward with messaging interoperability. The only point I would add is that the currently proposed technical model for exchanging messages between vendors is almost certainly wrong and needs a complete overhaul/replacement.
Whether and how we should go about sharing records is another very challenging issue. One reason it is very important is that is where the housekeeping money is going. Just imagine how much good work could be done with the billions of dollars that have been wasted pursuing this abject folly.
And so to the root cause of it.... I have been thinking about this agreat deal and for a very long time. My first serious look was when helping Trisha Greenhalgh by reviewing a draft of her first report into the state of NPfIT - 'The Devil's in the Detail' Trish's overall conclusion was that as a species we have not evolved to a point at which we are prepared to sign up for holus bolus sharing of personal medical records and that we may never do so. She described the intertwined wicked problems involving privacy, trust, completeness and accuracy of data. On the basis of her reports the NPfIT was disbanded 7 Billion Sterling up in smoke.
Clues as to the right way of doing things come from the efforts of the NPfIT refugee diaspora which reached as far as Australia (some more useful than others). A key outcome was the Scottish effort led by GP Libby Morris who put in place the Scottish Emergency Care Summary which has enjoyed significant success.
In my opinion the shining star is the Great North Care Record (GNCR) - work of Dr Joe McDonald a retired psychiatrist in Northumberland.He was fired from a key role in NPfIT for being a troublemaker. Joe has a very personal reason for desperately wanting to see shared records succeed (his wife of 30 years very nearly died for the lack of one).
GNCR has links into all GPs' systems within its catchment and patient consent to access the record is obtained at the point of care when needed at which point GNCR retrieves the data from them. Its use has steadily grown and as trust has been established further uses for it identified and an expansion programme is underway.
I know it works well because I developed a similar system in NZ. The CareInsight (CI) system was installed in four regions beginning in 2011. It is typically used by ED clinicians to look at the records of patients in emergencies, it is also used to assist in pre-admission planning. It has been used many thousands of times and its use continues.
One of the key benefits of systems like GNCR and CI are that they do not need an opt-on/opt-off palaver, consent is acquired as it is required. Additionally the responsibility for data quality and completeness is delegated to the GP.
Of course like all systems continuous improvement and fine tuning are key but with a simple system that is not difficult.
The health authorities who described it as a "toy system" they could not wait to get a real EHR system ... they said... Heard that before anywhere?
Anyway gentlemen, we have to come up with a plan and we have to act. Salve Tim Kelsey. Now the floor is ours . Let's do this.
I would be very keen to play a key role in taking this forward. It is something I have been keen to do as long as the MHR/PCEHR has been in existence.
Kind regards,
Tom
David, Bernard, Andrew and Ian, I agree with all of you.
The conversations we need to have right now are "how to fix secure messaging?" and "whether and how to share patient records" - i.e. what to do with the My Health Record problem child?
Andrew is totally right about messaging, no question whatsoever. Unless we can convince everyone involved that those matters must be addressed, we do not have a hope of moving forward with messaging interoperability. The only point I would add is that the currently proposed technical model for exchanging messages between vendors is almost certainly wrong and needs a complete overhaul/replacement.
Whether and how we should go about sharing records is another very challenging issue. One reason it is very important is that is where the housekeeping money is going. Just imagine how much good work could be done with the billions of dollars that have been wasted pursuing this abject folly.
And so to the root cause. I have been thinking about this agreat deal and for a very long time. My first serious look was when helping Trisha Greenhalgh by reviewing a draft of her first report into the state of NPfIT - 'The Devil's in the Detail' Trish's overall conclusion was that as a species we have not evolved to a point at which we are prepared to sign up for holus bolus sharing of personal medical records and that we may never do so. She described the intertwined wicked problems involving privacy, trust, completeness and accuracy of data. On the basis of her reports the NPfIT was disbanded 7 Billion Sterling up in smoke.
Clues as to the right way of doing things come from the efforts of the NPfIT refugee diaspora which reached as far as Australia (some more useful than others). A key outcome was the Scottish effort led by GP Libby Morris who put in place the Scottish Emergency Care Summary which has enjoyed significant success.
In my opinion the shining star is the Great North Care Record (GNCR) - work of Dr Joe McDonald a retired psychiatrist in Northumberland.He was fired from a key role in NPfIT for being a troublemaker. Joe has a very personal reason for desperately wanting to see shared records succeed (his wife of 30 years very nearly died for the lack of one).
GNCR has links into all GPs' systems within its catchment and patient consent to access the record is obtained at the point of care when needed at which point GNCR retrieves the data from them. Its use has steadily grown and as trust has been established further uses for it identified and an expansion programme is underway.
I know it works well because I developed a similar system in NZ. The CareInsight (CI) system was installed in four regions beginning in 2011. It is typically used by ED clinicians to look at the records of patients in emergencies, it is also used to assist in pre-admission planning. It has been used many thousands of times and its use continues.
One of the key benefits of systems like GNCR and CI are that they do not need an opt-on/opt-off palaver, consent is acquired as it is required. Additionally the responsibility for data quality and completeness is delegated to the GP.
Of course like all systems continuous improvement and fine tuning are key but with a simple system that is not difficult.
The health authorities who described it as a "toy system" they could not wait to get a real EHR system ... they said... Heard that before anywhere?
Anyway gentlemen, we have to come up with a plan and we have to act. Salve Tim Kelsey. Now the floor is ours . Let's do this.
I would be very keen to play a role in taking this forward. It is something I have been keen to do as long as the MHR/PCEHR has been in existence.
Kind regards,
Tom
Ian, my apologies, yes you are quite correct IT is being used very successfully across the whole healthcare industry, primarily in the test and monitoring equipment areas and in running healthcare enterprises as businesses.
Where IT has been less successful is in supporting the physician.
If it's OK with Andrew, can I suggest we start a conversation about what Andrew needs as (I think) a gastroenterologist.
FYI, My Masters and PhD were in biological systems modelling. My PhD was in modelling the electrical activity of the human small intestine. I have kept up with the research activities relevant to the gastrointestinal tract (a science now known as Neurogastroenterology) and some of the papers I co-authored back in the 1970s still get cited, the most recent was last year.
My medical science expertise is in a very narrow field, but at least I have a head start in understanding the context in which Andrew works. Hopefully I can ask some meaningful questions and understand some of the answers.
I make no claims as to fully understanding clinical medicine, but I have done a lot of research into its practice.
If we can try and understand Andrew's needs as a physician solving clinical problems, maybe we can generalise that understanding and better identify what technology should do to improve healthcare.
First question:
Why do patients come to see you? Are they always referred by GPs?
I prefer intractable to wicked as its more descriptive of the nature. These problems are not impossible, they are simply difficult to get a handle on.
Other than my small quibble I agree with the tenant that clinical communication is perhaps the primary goal, from that any number of virtual health records can be created.
The world has changed considerably in the past decade, the volume and speed in which information. An be shared and analysed is no longer a hinderance. The need is still based on tools to support people communicating and sharing wisdom
Hi Bernard,
Hard to summarize, but patients are referred by GPs with a specific problem so need to assimilate their past history, medications/allergies and investigation results. Take history and examine patient or proceed straight to procedure.
Every interaction results in report back to GP and many people only seen once. Some patient require review of many investigations done over many years looking for trends/associations between abnormal results and events/medication etc
This was the environment that prompted medical-objects, although we are known for messaging, that is just one part and have a lot of experimental decision support and report generation/viewing/cumulative abilities.
Referrals are virtually all text, including pathology/radiology reports so we usually request the HL7 version before patient comes so can be used for decision support/cumulative results.
Some patients referred on to eg Specialty surgeons and can transfer results in near real time without loss of data ie in original hl7 format and this saves a lot of time as previously photocopied and faxed results. Can now electronically send eg ERCP images and pathology and letters and then ring person and they have the images in front of them.
99% of reports go out electronically to GPs/other specialists, and have for > 10 years.
What I would like is atomic data in referrals to create a populated medical record that can be used as starting point and not worth creating one when may only see patient once, but limits decision support. What we get is a blob of text containing history, medications and pathology so have to scroll down, down, down and formatting yes than ideal and no atomic data.
However because Buderim GE Centre is the seed organization of Medical-Objects we have a very electronic/CDS enabled environment compared with most. Its also available for R&D into decision support and thats what mostly interests me.
Thanks Andrew.
Questions:
1. What do you mean by atomic data?
Is it exclusively quantitative i.e numeric or definitive i.e falls into a category or not? (e.g has/has not high blood pressure
2. Do you do a procedure for diagnostic or treatment purposes? Or both?
3. How do you handle a patient with multiple con-current, potentially interacting conditions?
4. Would it be a help to have direct access into the referring GP's system?
Hi Bernard,
1. Atomic data is the actual value of an observation in a machine readable form in the form of name=value where the name is a code eg LOINC and the value may be a number, a code or a string etc. The name=value pairs may be structured with child name=value pairs.
It could be a sodium, a diagnosis or distance reached in a procedure etc You can reliably extract the value using the code for the name to find it, rather than guessing from text processing.
2. Consultations and procedures are both for diagnosis and therapy
3. Multiple conditions are the norm, especially these days so you often need to assess fitness for a procedure and if a patient is on eg anti-coagulants so atomic coded medications would allow some of this to be screened using decision support, but it is never sent in an atomic machine readable form!
4. Access to a GP system is not needed as may be to much data, really want summary and recent pathology/radiology, ideally in original HL7 format so get the atomic data, when it exists. The current HL7 Australia standard describes a format for a VMR (Virtual Medical Record) which allows a patient summary with atomic data about allergies, past history, medications etc to be sent. Implementation of this would allow creation of an initial patient record at specialist end, but its not implemented by GP systems. As each system has data in own format, the VMR is a common format for a patient summary that can be moved around between systems, which is what is needed for decision support etc
Andrew
Do atomic data pairs have a context? eg date, fasting condition etc?
Are you interested in state data? i.e. a number of data pairs that describe the condition of an organ and which are measured at the same time?
Yes Bernard,
all of the above and more. HL7V2 has an observation segment, "OBX" and the report header "OBR" segments provide a context for a report and you can define archetypes/templates to structure the OBX segments to give you any data structure you need to provide state and report structure etc.
This is of course so far away from getting the basic HL7V2 right and displayed correctly, but the sky is the limit in terms of complexity. You might like to have a browse here: https://kb.medical-objects.com.au/display/PUB/Clinical+Decision+Support
or here for whats in current standard (The basic VMR is included): http://site.hl7.org.au/standards/australian-published/hl7-v2-pathology-messaging/
There have also been cancer histology reporting models developed which use the same mechanism to encode complex models in HL7V2. However ADHA just want pdf...
Andrew,
An hypothetical use-case - I have no idea if it is clinically realistic.
A patient has had an ERCP and there are no obvious physical abnormalities in their pancreas.
However you want to simultaneously test the dynamic exocrine and endocrine functions of the pancreas in response to various food stimulii.
Would you want to put the raw test data into a medical record or just the observations/conclusions?
Grammar please
... a hypothetical (hard 'h' preceding the consonant.
... an hotel (silent 'h' preceding the vowel)
Bernard,
you want as much atomic data as possible so you can go back and look at outcome data for specific conditions by analysis of population data. In your example you want "Normal ERCP" as atomic data and any endocrine tests would normally be reported by labs with atomic data, its the histology that is text currently, and this causes issues with things like cancer and colonoscopic screening results, as you have to use natural language processing to try and work out what was found.
In reality there is an enormous backlog of clinical modelling that needs to be done. How much modelling could have been achieved with the $2 Billion of taxpayer $$ spent on rubbish by national eHealth authorities?
@9:29 PM You are quickly descending into the health vortex where you will become increasingly embroiled in a sea of confusion as you attempt to 'solve' something that it would seem you have yet to precisely define.
Your 9:19 AM comments, viz. 1. "I make no claims as to fully understanding clinical medicine, but I have done a lot of research into its practice" and, 2. "If we can try and understand Andrew's needs as a physician solving clinical problems, maybe we can generalise that understanding and better identify what technology should do to improve healthcare."
This is of concern. Why?
Understanding clinical medicine involves understanding workflows and the way clinical medicine is practiced in order to solve clinical problems. However, one cannot then assume that generalising the understanding, albeit in a limited domain of clinical practice, will lead you to determining what is 'needed' to 'improve' healthcare.
With respect I suggest you are repeating the age old mistake of entering the vortex far too early and trying to solve 'the problems' of clinical practice without first illuminating and defining the issues and problems that need to be addressed.
@11:42PM
You are Anonymous so I am unsure how much experience you have but solving real world issues at the coalface is usually a good way to find out if a solution is workable. As someone with IT interest since the 70s and clinical experience since the 80s there are 3 main areas that IT can help clinical medicine, 1. Rapid transfer of documentation 2. Individual patient decision support with a focus on obsessive checking that humans are bad at and 3. Research across a population of patients to look at outcomes.
Medical-Objects was born out my exploration of those areas, with real time messaging, GELLO and Archetypes/templates/Models/SNOMED-CT and #3 is still under active R&D
The fundamental problem currently is a lack of reliable standards compliance so that you don't get sucked into the vortex of spending energy trying to fix errors caused by poor quality, untested software. The eternal search for yet another standard, when the problem is implementation quality of current standards has been the age old mistake that I see. The early standards work of HL7 shows a lot of insight, a quality that has dissipated over time.
Anon @11:42 PM
"Understanding clinical medicine involves understanding workflows and the way clinical medicine is practiced in order to solve clinical problems. However, one cannot then assume that generalising the understanding, albeit in a limited domain of clinical practice, will lead you to determining what is 'needed' to 'improve' healthcare."
I agree. In fact, I'd go as far to say that understanding how clinical medicine is currently practiced is only the first part of what needs to be done.
There is a lot of talk about "transformation" of healthcare when all that is really happening is the development of new ways to deliver old solutions - which might result in incremental improvements but even then could have negative consequences.
Transformation requires developing new ways to solve existing problems.
However, it is important to understand what type of problem needs to be solved. Is clinical medicine a branch or subset of biological/medical science? Or is it a different type of problem? If so, what type of problem is it?
Andrew said "In reality there is an enormous backlog of clinical modelling that needs to be done"
I'd be interested in what Andrew means by "clinical modelling"
@I'd be interested in what Andrew means by "clinical modelling"
Clinical modelling is giving people agreed data structures to record clinical events in a way that allows them to be shared and used for decision automation, searching and research into outcomes.
Just like people describe MyHR as "About as useful as a chocolate teapot" which makes me smile, the rapid transfer of pdfs only scratches the surface of a "solution" because unless natural language processing gets a whole lot better quickly its not a solution for computer based decision support on an individual patient. Its a solution for human decisions, but that works well with Fax.
Pathology already has loose models for numeric tests because each piece of data is represented by a LOINC code, but for eg Histopathology a hierarchical agreed model is required and for some cancer reporting these have been progressed, but not implemented. Questions such as was the polyp malignant, how many polyps were found etc cannot be automated currently.
The clinical modelling is basically the archetype concept, develop a maximal model of all potential data, with the ability to add new data and text extensions in the future for clinical data eg Echo, CT scan, CXR, Endoscopy reporting.
The sad part is that we can't even get compliant reliable text based reports to move around currently so we are stuck in the 90s because compliance with standards has never been on the national eHealth agenda, despite $2 Billion of investment. Witness the naming of most biochemistry reports as "Common chemistry" so they group in MyHR because "Its to much to expect people to use/change codes in the report title" We have a eHealth Cargo cult at the wheel. The basic clinical modelling here is having codes for report titles that work with subsumption so you know that "E/LFTs" "isa" Electrolytes and "isa" Liver Function Tests. It appears there is no limit to how low we will go to make MyHR "work" in a cargo cult world.
Good question "What is meant by clinical modelling"?
As a clinician deeply experienced in developing successful and widely accepted health IT solutions Andrew will have a very valuable perspective.
As a medical scientist expert with a deep understanding of biological systems modelling Bernard may have a completely different perspective.
It will therefore be illuminating to understand where there is a meeting of the minds around "clinical modelling".
I just want to be able to access all of my diagnoses, tests, specialist letters, medicines as I travel around so I can manage my own health. I'm not fussed if its just a pdf so all this obsession with coding and standards is just a distraction - I don't care how it is written - it is access that is key.
@11:46 AM
Do you expect "all of my diagnoses, tests, specialist letters, medicines" to get into myhr?
The government's website explains that none of your history will ever get into myhr.
The simple and only way to access all your medical data (at least the data that your GP has on you) is to ask for an electronic copy of your medical record.
It's also the only way to get your data into a new GP's system. I know that works - I've done it.
@11.46 AM that's all good. You want to be able to access your health information. That's a consumer perspective in its most basic form. Lovely.
But the consumer is only one 'cog' on the wheel. The clinician(s) are the most important cogs on the wheel because they see the patient, diagnose, advise and manage the patient's clinical issues, share their thoughts and information with other clinicians, and record the clinical information. If those cogs are not fully engaged, then you, the consumer, will have Buckley's hope of getting access to your health information.
So, while your wants and needs are important they pale into insignificance by comparison with those of the clinicians who create your health information.
I am not interested in having a single GP - due to my work I am fairly nomadic so I want to keep my information, not have it stored in a single GP office which I am not allowed to have access to even though I pay for it.
The clinician sees me - yes, though I pay for their time, diagnoses me (yes, with my help as I provide my history and my information and my medicines (the folder)), advise yes, manage - definitely not - once I leave the clinic or surgery or hospital I am on my own to make the next appointment or take the next step. So I guess I disagree that an individual clinician is the most important cog - I wish it were the case but once I leave that appointment I have no clinician in my life - until the next time - and it might be a different person.
When I need it I fully intend to hire a nurse coordinator to help me and then I want that person to have all the information. It's my choice isn't it? Isn't that where we are supposed to be going?
@ 1:38 AM you have highlighted the core of Anon 11:46 AM's problem which lies at the heart of why the My Health Record is such a total failure.
There are many players - the consumer, many clinicians, the government. They all have different wants and needs. They all have limited and different understandings of what it is [the problem(s)] that need to be solved to satisfy their different needs and wants.
Further, whilst they lack the skills to do anything much about that they do have an incredible capacity to be very noisy to make themselves heard and to create a lot of political pressure to get something done; without anyone party knowing what it is that needs to be done.
The end result is confusion reigns supreme leading to huge expenditure of public funds whilst delivering nothing of value to anyone.
@1:38pm
What you are highlighting is the ability to move records around at will and while a printed copy will work, it involves every provider scanning in documents. In your case an online repository might make sense, or even a usb with the data on it.
However if you results were in a proper format the person you go to see could import your old record into their system and have full access to the data in its original format. This is the shame of MyHR, it should keep data in its original format so data can be moved around at will, although the privacy aspect are still an issue. Data in a standard format can be printed at will if thats what you want, but also integrates with clinical systems, which is a lot more useful than a 20 page document that you have to scroll through!
In reality patient analysis of atomic data is already happening and those system want the atomic data, or else you have to type it in again.
eg. https://cholesterol-calculator.com/cholesterol-ratio-calculator-%F0%9F%94%A5/
The different views above regarding usage highlight the complexity. Different people in different roles with different patients want different data displayed/accessed differently. One size doesn't fit all. Sure, we can sit down and create templates for different use cases, but you have to accept it's going to be complex, time consuming and only satisfy ##% of users ##% of the time. The clinical occupations all have their own history of separate training and associations/colleges influencing different terminologies, workflows and dogma. Health care is not as simple as another single industry. The number of clinical occupations, conditions to be treated, testing and treatments increase the complexity.
To enable the different uses and different display of the data requires complexity. You cannot achieve flexibility without complexity. Structure, atomic data, terminologies and classifications are all required to be standardised. Variations to workflows of various users have to be reduced to best practice not "..but that's how we do it here" or some other excuse just to add unnecessary complications. Many compromises have been made.
Many have worked on standards in the past and/or are still working on them. It's naive to think the standards are complete or the solutions are simple. Some complexity is necessary and further research is required to validate the usefulness of implementations before rollouts. The rose-coloured glasses need to be sent back to the PR people (eg. ADHA, Dept. of Health, advocates) for a refund. If the problems were simple, they would be fixed by now and we would be saving money. There are many areas open for improvement that are being ignored by those in control. Tim Kelsey was just another in a long list of people not meeting our expectations. I'm sure he did the job described by his contract but who wrote the polices, agency directives and contracts? How can we identify and promote the best opinions and the best solutions? How can we obtain the changes required by all involved from education, researchers, users, developers, government policies and others?
It would be naive to believe the solutions are already here and simple. I would like to see more progress, but I acknowledge we are far from what is possible and our government/bureaucrats/agencies are not on top of the detail. Those in control appear to have difficulty finding and identifying good advice.
The original idea of the PCEHR was to join up all the various data repositories so as to "reduce data fragmentation". This is a reasonable idea but needed NEHTA to solve the interoperability problem. They failed and changed the design so that documents have to be uploaded.
myhr wasn't what was intended but is what is being sold. INHO, it is a fraud and doesn't/can't deliver.
tygrus said "The different views above regarding usage highlight the complexity. Different people in different roles with different patients want different data displayed/accessed differently."
That's why it's a good idea to use Model View Controller (MVC), a design pattern for computer software.
"It can be considered an approach to distinguish between the data model, processing control and the user interface. It neatly separates the graphical interface displayed to the user from the code that manages the user actions. The objective is to provide a framework which enforces better and more accurate design."
https://www.techopedia.com/definition/3842/model-view-controller-mvc
We now have a system where the data model (documents) is tightly coupled to the view of the data. All the user interface can do is call up a document.
To call myhr a "database" is being generous, it's a document management system with all the attendant problems tyrgus identifies.
It's such a fundamental design decision that the only way to change it is to start again and completely redesign the thing. All the data is in the wrong form and would need to be thrown away.
AnonymousDecember 16, 2019 11:46 AM
Use a consumer app then. Or just as simply your camera on your phone and a cloud store which comes free with any number of things. Seems your service need is selfish laziness
"That's why it's a good idea to use Model View Controller (MVC), a design pattern for computer software."
Having good data, and not losing any data quality is the core of eHealth and myHR should just be a view of that data. This is the problem with non technical, non clinical, non consumer management of eHealth, they just take one view and assume its the system. The data is something only nerds in the basement understand, but in reality its the data that is valuable as the view can be recreated from the data, but converting atomic pathology into pdf and discarding the data is a blind ending one way street.
As Trinity says: You've been down there, Neo. You already know that road. You know exactly where it ends. And I know that's not where you want to be
Hi Tygrus, I would very much like to chat confidentially off-line with you re your December 16, 2019 5:25 PM comment if you would be good enough to make contact with me via ihsipl@bigpond.com
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