This appeared last week:
Will Gathering Vast Troves of Information Really Lead To Better Health?
December 28, 20173:55 PM ET
Heard on All Things Considered
The Mayo Clinic is building its future around high-tech approaches to research known as "precision medicine." This involves gathering huge amounts of information from genetic tests, medical records and other data sources to ferret out unexpected ideas to advance health. But one longtime scientist at the Mayo Clinic isn't playing along.
Dr. Michael Joyner is a skeptical voice in a sea of eager advocates. Joyner's lab studies exercise. It is, fittingly enough, in a hospital building founded in the 1880s. While Mayo has built all sorts of new labs at its sprawling campus in Rochester, Minn., Joyner can conduct his work without glitzy DNA sequencers and other high-tech tools of precision medicine.
And it's not simply that he's an old-school devotee. He believes that the solution to our most pressing health problems lies in thinking about whole human beings, not breaking everything down to DNA sequences.
"The enthusiasm for this [precision medicine] is occurring in a country where life expectancy is actually falling," he says as he walks through the old linoleum-tiled halls of St. Mary's hospital.
That fact alone leads Joyner to ask whether the money being poured into high-tech medical research is really solving the nation's stark health problems, like obesity, heart disease, high blood pressure, diabetes, Alzheimer's disease and cancer.
Joyner says there are certainly appropriate places to use this technology, and he doesn't dispute the individual stories of success his colleagues tout. But he believes the best way to address the health concerns facing the nation is by studying — and treating — whole people, not by breaking the problems down to billions of genetic bits and pieces.
He practices what he preaches in both his personal life — his thorough exercise routine includes commuting by bicycle — and his physiology lab.
On the day I visited at the end of August, volunteer Greg Ruegsegger was outfitted with monitors, a catheter threaded into a vein and a mask to capture his breath. He would exercise to the point of exhaustion while scientists studied him. This is far more informative than any genetic test, Joyner says.
"People have looked at 3,000 elite endurance athletes — these are people who compete in the Tour de France and win Olympic medals in cross-country skiing and distance running — and [scientists] have been unable to find any genetic marker for superior performance."
And when it comes to the health of ordinary people, Joyner talks about real-world studies, which show that walking or biking to work has four- or fivefold more influence on a person's body mass index than that person's genetic profile.
Joyner is focused on how the body's systems work together during exercise, but the same interconnectedness applies to many diseases. That's why cancer drugs that target one biological pathway generally don't last long. Tumor cells simply find workarounds, exploiting the redundancies deeply embedded in biology. And that's why Joyner has so little faith in science that keeps trying to focus down on smaller and smaller details.
"One of the things we have to ask ourselves when we get these big initiatives is, 'What's the definition of success?' " he says.
Scientific discoveries alone don't do it for him. Doctors need to build effective treatments — and patients need to follow along. This is the promise of precision medicine in the long run, but Joyner has published articles (like this one) skeptical of the drive to collect vast piles of information, hoping to make sense of it later.
"Is this just going to be a biological Tower of Babel," he asks, or will this information also lead to discoveries that translate beyond the laboratory and actually change public health for the better?
He doesn't doubt that DNA sequencing and other tools of precision medicine are useful in specific instances, such as for diagnosing rare diseases. There are a few uses in cancer treatment, but so far there has been just one randomized study of patients assigned to treatments based on their tumor's DNA profile, and it showed no advantage over traditional medical judgment.
This isn't a popular point of view elsewhere at the Mayo Clinic, which is sinking hundreds of millions of dollars a year into precision medicine. The shiny new labs across campus seem a world apart from Joyner's physiology lab.
After my conversation with Joyner, Mayo public affairs officers eagerly led me to a series of scientists there who disagree with him. One stop was at the Medical Genome Facility.
Lots more here (and you can listen too):
I will leave the reader to make up their own mind as to what they think!
David.
30 comments:
The ADHA and it’s CEO/executives I am starting to believe have lost sight of the person factor, the obvious treatment of staff and the seemingly stubbon belief in computer systems will cure the health system (which probably has a cold rather than anything terminal). I doubt this has them thinking anything.
Why would they be thinking about anything? They know they are right, they know what they have been asked to do and they are being paid handsomely to do it. The ultimate vested interest.
I hope ADHA is turning thoughts to Schneier's prediction.
But more are coming, and they'll be worse. 2018 will be the year of microprocessor vulnerabilities, and it's going to be a wild ride.
And reading this morning regarding NK office 39, state sponsored cyber criminality will have pretty good infrastructure, probably hosted in Azure, I remember our leaders have made us a target for NK. Still we have patching guidelines so all will be well, except ADHA burns their technical folk like they were fax machines
That's going to be only one of many problems Digital Health is going to start running into. The article David cited is only the tip of the iceberg - it focuses on genomics.
The realities are that GPs are going to be so inundated with the demands for more data and the need to interpret more and more data that the health care system will start to grind to a halt. GPs will also become more and more wary of this tsunami of unmanaged, questionable, probably incomplete, probably irrelevant, risky (they may fall foul of privacy laws, never mind safety issues) that they will pay lip service to the collection of such data, thereby polluting the data in the myhr even more They'll look after their own data, it's in their self interest to do so.
ADHA is desperate to load myhr with more and more (supposedly clinical. but it isn't really) data in the false belief that more data is the way to go.
It's back to the stupidity of digging harder when you've dug yourself into a hole. But if all you've got is a spade. when else is there to do?
Here's an observation - IBM used to rule the IT world. Now they are just a bit player (excuse the pun). What beat them? The microprocessor and the internet. The world changed under IBM's feet.
Where is the future of health care? I can guarantee it won't be driven by Digital Health, IT or even Informatics, although IT and data will be involved.
There are signs that new understandings and approaches are starting to emerge, you just need to find them and recognise them.
Bernard's comment is on the money. To paraphrase part of his comment: If your only tool is a hammer, every problem starts to look like a nail.
I have been trying, and failing, to understand the mindset within ADHA that fails to fess up to the patient safety issues surrounding incomplete data in the myHR. The more categories of data you try to collect - the worse the problem becomes. Similarly, as you increase the number of people who are not engaged with the process (ie. opt out) - the worse the problem becomes.
Every GP I know can see the problem. Why can't ADHA?
Nous, open mindedness, and a questioning mind, together with problem solving analytical skills, logic, pragmatism and enlightened vision, underpinned by a solid mix of - business, political, clinical acumen, health informatics, engineering and mature leadership skills - are all that is required to achieve the 'desired' outcome.
@3:40 PM you've nailed it. Where are these people? Which of those 'criteria' can the current CEO lay claim to?
Doctor Foster - the father of health analytics would be a good start, internationally acclaimed digital health leader and high sort after speaker, not to mention a regular attraction at datapolozia
IMHO, Digital Health, which is just a new buzzword and which is code for IT, is starting at the wrong end. IT is a solution, but, in its present forms, is the wrong solution. You need to start with medicine and new ways of practicing medicine, not with solutions that store data gathered from old ways of doing medicine. Nor with new solutions that replicate old solutions. That's the lipstick on a pig approach.
4:35 PM I agree. That's the easy bit. BUT who will fund such an exercise? And how do you get the right people to take on a project like that, starting from scratch? There is plenty of criticism but to what avail?
"That's the easy bit. BUT who will fund such an exercise? And how do you get the right people to take on a project like that, starting from scratch?"
1. you don't fund such an exercise
2. you don't take on such a project
3. you learn from the English Industrial Revolution
4. you remove as many impediments as possible
5. you set ground rules re patient safety
6. you facilitate innovation and risk taking
7. you reward progress, if it is obviously delivering value.
It's not hard, if you know what you are doing. If you don't it's the hardest thing you've ever tried to do and you will certainly fail.
This lot have no idea what to do. All they are doing is the opposite of #4.
Fortunately reality abhors hubris and stupidity. The opposite of #7 means that anything that doesn't deliver value will die, sooner or later. Preferably sooner.
tl;dr the government should get out of the way, apart from #5 & #6
Fully agree Bernard, there is an old business saying - it cost far more to win a market position back than to keep it. the ADHA Board may not have started the demise of standards in Australian eHealth but they certainly contributed to its continued demise. I see little evidence of any broad intellect at ADHA that could orchestrate policy, and standards. Yes innovation is great, but behind all good innovations stands a healthy ecosystem. We have lost that IMHO
While it is commonly believed that Standards obstruct innovation, the evidence suggests a rather different story. Surveys of innovating firms find many enterprises say that Standards are a source of information that helps their innovation activities. Moreover, while many say that regulations do also constrain their innovation activities, these constraints do not necessarily prevent innovation. These ‘informing’ and ‘constraining’ effects tend to occur together with an implication that the most innovative firms are good at finding information in Standards, and, because they are ‘pushing the boundary’, they also find that regulations constrain their innovative activities - but do not prevent these.
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/461419/The_Economics_of_Standardization_-_an_update_.pdf
Well said Bernard. Throughout my working life I have always embraced your points #4,6&7. Unfortunately they do not fit the ADHA's culture and modus operandi and with the way the ADHA Board and organisation have been set-up they never will.
Bernard @12:34 PM said "ADHA are desperate to load MyHR with more and more data in the false belief that more data is the way to go."
Wait till they have 20 million mandatory records loaded full of 'stuff' AND no doctors are using it.
Oh, how the world will laugh, how Tim will blab far and wide, how Australia will look so stupid and how Mr Hunt will say "How was this allowed to happen. How do we get out of this mess?"
When myhr goes opt-out most of the data in it will be what the government puts in - MBS/PBS billing data.
I went to see a new GP the other day. My myhr now shows that I had a consultation with a GP. That's it. No reason, no medical data at all, nothing.
If the patient's nominated service provider doesn't upload a shared health summary and the patent doesn't put in allergies etc, there will be little or no useful data in it.
I had a look at the on-line training to see if GPs get different information. They don't. Most of the visits to the GP just say "Surgery Consultation", some list a range of potential reasons. One says:
Reason for Contact
Depression
Hyperlipidaemia
Parkinson's disease
Osteoporosis
Hypertension
Ischaemic heart disease
Osteoporosis
The GP must be a fantastic doctor because the consultation 8 days later shows the patient has no diseases and a new SHS is uploaded.
This list is actually an aggregation of all the conditions the patient has had over the previous nine or ten years. There is no indication of the current status.
If you look at the myhr for this patient the current SHS also has this aggregated list. Dates can be included, but in the example aren't. There is some room for comments but I don't know how much useful information could be included in a simple list view.
This may only be a training example, but it is either quite pathetic training or the system actually is quite pathetic.
Calling it a "Health Record" is a bit of a stretch. It's not surprising nobody is using it.
There does not seem to be anything extra that a GP sees that isn't available to the "consumer" through the "consumer" portal.
I think it totally incomprehensible Health Ministers across ALL jurisdictions do not understand they are overseeing and therefore responsible for a hugely costly system which is of no benefit to anyone! Totally incomprehensible,
4:35 PM ... you can't blame the politicians too much when AMA, RACGP, and Health Department Advisors tell the Minister how wonderful it is.
@4:35 PM you can't blame the politicians entirely when the AMA, RACGP, PGA and Department bureaucrats in their ignorance tell the Ministers how wonderful it is. A huge confidence trick the likes of which Australia has never before seen.
Indeed you can't blame the pollies other than to wonder why they don't realise they are out of their depth and have some experts audit the whole mess!
David.
David,
I agree, and it shouldn't take an IT or health care expert to ask the simple question: How did the business case that justified the PCEHR show what value there is in the system and exactly how that value would be delivered?
My betting is that the business case just had motherhood and wishful thinking in it.
With a bit of luck, one day the ANAO will delve into this.
I am new into health, an architect for some four years now I am still learning which is one reason I looked to do some time in health. I was informed of this blog late last year and I have to say it is a great source of viewpoints. The community however seems to be positioned at two extremes, I have not encountered division of opinion quite like this. There seems to be qualified folks in both camps so why is it that some clinicians and health informatics practitioners as put forward by ADHA believe this solution to be the answer, but then so many not engaged by ADHA have views to the contrary? Health seems to talk about Interoperability as the holy grail but then seemingly has a national agency in the middle ripping the very community they serve in half?
From a solution architecture viewpoint many of these solution and specifically the current approach to the MyHR would appear to be introducing a swathe of problems into the system of systems that makeup health IT. I cannot find any impact assessments that have looked into this, could anyone direct me to the National Architecture repository?
"From a solution architecture viewpoint many of these solution and specifically the current approach to the MyHR would appear to be introducing a swathe of problems into the system of systems that makeup health IT. I cannot find any impact assessments that have looked into this, could anyone direct me to the National Architecture repository?"
I'll go out on a limb here and suggest, AFAIK, there isn't one.
If someone knows otherwise link(s) please!
David
re: "the National Architecture repository"
As David said, there isn't one.
If you go to the bottom of this page,
https://www.privacy.org.au/Campaigns/MyHR/
you'll find two links, one to the original Concept of Operations document which was circulated for comment, but what has disappeared from government websites. The link is to an archived version.
The other is to the PCEHR Architecture v1.35 which is still available on the digital health website.
If you go looking for business requirements or user scenarios/user cases, good luck.
If you go looking for non-functional requirements, I don't think the developers even know what that means, never mind identified them.
Any problems, let me know via these comments and I'll put the documents where you can get at them anonymously.
There are reports in today's media of a research paper looking at opioid use in palliative care. The SMH report starts
"A review of medication errors involving opioids in palliative care has found under-dosing may be contributing to the burden of the pain of terminally ill patients in the last weeks of their lives.
In a paper published in British Medical Journal Supportive and Palliative Care today, researchers from NSW and the University of South Australia found errors involving opioids are almost three times higher than previously reported in other healthcare settings."
Out of curiosity, I followed up on this report looking to see what they may have said about health records and if they contribute to the problem and/or solution
I discovered that the report is essentially the same as this:
"Quantifying the burden of opioid medication errors in adult oncology and palliative care settings: A systematic review"
Palliative Medicine · June 2016
available here:
https://www.researchgate.net/publication/283823417_Quantifying_the_burden_of_opioid_medication_errors_in_adult_oncology_and_palliative_care_settings_A_systematic_review
There are no mention of health records in the report itself, so I can only conclude that, in this context, they are irrelevant. However, there are two mentions of records in the references, one of which is this from NSW Health:
http://www1.health.nsw.gov.au/pds/ActivePDSDocuments/PD2012_069.pdf
What I found most interesting was in the definition of a Health Record:
"The main purpose of a health care record is to provide a means of communication to facilitate the safe care and treatment of a patient / client.
A health care record is the primary repository of information including medical and therapeutic treatment and intervention for the health and well being of the patient / client during an episode of care and informs care in future episodes. The health care record is a documented account of a patient / client’s history of illness; health care plan/s; health investigation and evaluation; diagnosis; care; treatment; progress and health outcome for each health service intervention or interaction.
The health care record may also be used for communication with external health care providers, and statutory and regulatory bodies, in addition to facilitating patient safety improvements; investigation of complaints; planning; audit activities; research (subject to ethics committee approval, as required); education; financial reimbursement and public health. The ecord may become an important piece of evidence in protecting the legal interests of the patient / client, health care personnel, other personnel or PHO.
The health care record may be paper, electronic form or in both. Where a health care record exists in both paper and electronic form this is referred to as a hybrid record. Where PHOs maintain a hybrid record health care personnel must at all times have access to information that is included in each part.
This policy applies to health care records that are the property of, and maintained by, PHOs, including health care records of private patients seen in the PHO. The policy does not apply to records that may be maintained by patients / clients and records that may be maintained by clinicians in respect of private patients seen in private rooms"
There are other aspects of the use of Health Records which seem quite reasonable.
ADHA needs to ask itself this question:
"Does myhr conform to this definition?"
IMHO, it comes nowhere near.
And the states (via COAG) should ask themselves "why are we wasting time and money with myhr?"
So, once again, what is myhr and what is it for? It isn't what the Federal government claims and it comes nowhere near what the states (at least NSW) is aiming for.
And, once again, why not just provide consumer portal access to existing medical record systems for anyone who wants it?
Bernard (9.20am) re "existing medical record systems".
That suggests a job for ADHA - audit all of them and tell us which are still running on Windows XP.
re "That suggests a job for ADHA - audit all of them and tell us which are still running on Windows XP."
That's a job that might be within their capabilities, however would you trust them to report what they've found?
This does nothing to engender trust in the government:
"Cooking the books on climate change policy"
http://www.smh.com.au/business/comment-and-analysis/cooking-the-books-on-climate-change-policy-20171229-h0ba0h.html
While you are browsing the Health Record document from NSW Health:
http://www1.health.nsw.gov.au/pds/ActivePDSDocuments/PD2012_069.pdf
Have a look at who in the NSW system is authorised to see a patient / client's health record:
"A person authorised to provide assessment, diagnosis, treatment / care, observation, health evaluation or professional advice or those personnel who have access to the patient / client health care records on behalf of the NSW public health system to facilitate patient / client care.
Health care personnel include clinicians (and students) and clinical support staff. Clinicians include registered health practitioners and others including Assistants in Nursing, social workers, dieticians, occupational therapists and Aboriginal Health Workers. Clinical support staff include Health Information Managers, Clinical Governance and Patient Safety staff, ward clerks, health care interpreters and accredited chaplains."
This seems to mean that any NSW health record application that either accesses myhr directly or has downloaded a document from myhr is permitted to access that myhr data.
So how does this stack up against Tim's claim that "It is a criminal offence for anyone other than a registered clinical professional to access a patient’s My Health Record"?
BTW, the legislation that enables myhr does say that any data that could be legally obtained elsewhere, even if originally downloaded from myhr is not subject to the legal constraints of myhr.
Re: Bernard 9:20 AM "A review of medication errors involving opioids in palliative care has found under-dosing may be contributing to the burden of the pain of terminally ill patients in the last weeks of their lives."
These findings should not be surprising. So often one observes a tendency for ‘palliators’ to administer the ‘lowest dose’ they consider acceptable just in case a higher dose should accelerate the process of dying.
It’s somewhat paradoxical that a terminally ill patient, burdened with pain in the last weeks of their life, should be "under-dosed" with the lowest dose of an opioid which could be construed as being to prolong their last breath of life lest they should die more comfortably sooner.
The Victorian Government is to be applauded for ensuring the passage of the Voluntary Assisted Dying Bill.
https://dhhs.vic.gov.au/news-media/news/victoria-become-first-state-legalise-voluntary-assisted-dying
http://www.abc.net.au/news/2017-11-22/euthanasia-victorian-parliament-passes-assisted-dying-laws/9156016
On tonight's news "this huge problem is due to a decade of non-compliance and a record of cutting corners" .... sounds like they are referring to the My Health Record .... not so, they are referring to the inflammable cladding on more than 1,000 buildings in Melbourne.
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