Sunday, July 07, 2013

I Have To Say This Is Hardly A Surprise - Enrolment in The NEHRS / PCEHR Falls Short. Lots Of Commentary This Week.

The following appeared a few days ago.

Labor comes up short on personally controlled e-health plan

Source: The Australian
THE government has failed to deliver on its 500,000 target for the personally controlled e-health record system, coming up short by about 100,000 consumers.
According to a Health Department spokeswoman, the total number of PCEHR users was 397,745 as at June 30. She could not reveal the average number of logins for last month.
That represents a whopping increase of 313,196 registrations last month alone, compared with 84,549 at the end of May.
The government set a goal of half a million registrations by June 30 this year before the PCEHR went live 12 months ago.
At a budget estimates hearing last month, Health Deputy Secretary Rosemary Huxtable said the target was "still in sight" after getting 10,000 registrations - the highest number in a single day - on June 4. She later said 500,000 "may be a stretch".
More here:
This was followed by some really good commentary on The Conversation from Prof. David Glance.
3 July 2013, 6.52am EST

Is the government’s missed health record target meaningful?

David Glance
Director, Centre for Software Practice at University of Western Australia
The government has failed to meet a self-set target of 500,000 registrations of its Personally Controlled Electronic Health Record (PCEHR) by July 1.
As at June 30, the Department of Health and Ageing said that total number of users was 397,745. The majority of these registrations resulted from a recent push by DoHA using consultants to sign people up at public hospitals and at eHealth roadshows.
Still, even if the government had met the target of 500,000, it would have been a meaningless gesture. The vast majority of those who have signed up, if they ever get around to logging in, will be greeted with an empty record.
Given the lack of active participation on the part of GPs, as well as the lack of public hospital systems to integrate with PCEHR, there’s little evidence to suggest that this is going to change any time soon.
So far, only 4,805 individual providers have signed up to access the PCEHR portal. This is despite the fact that the government provides incentives to GPs to connect to the system by paying them the Practice Incentive Payments for eHealth (ePIP).
Despite these payments, GPs still struggle to see the benefit of spending time curating shared records when the legal liabilities are still unknown but are potentially severe.
The cost of the ongoing maintenance of these largely empty records is about AUS$80m a year. And that’s just the baseline. It’s clear that a great deal more funding will be needed to try and lift the level of meaningful use of PCEHR.
The problem for governments is that increasing spending on a system becomes progressively harder the longer it remains largely unused. What’s more, the devolved nature of the Australian health system makes it extremely unlikely that we’ll ever see true and meaningful use of the system.
What we will continue to see however, are reports of increasing numbers of registrations, data about the number of people who accessed the system and how much administrative data has been added.
The latter figure, in particular, is an easy one for the government. All Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data gets added automatically. This shows when individuals have claimed anything on MBS or filled out a script at the pharmacist.
Again, this data is clinically meaningless and of marginal benefit to an individual. Its only use is for, perhaps, reminding people when they last saw their doctor.
We also had some pretty grumpy comment from the a libertarian commentator pointing out an possible agenda for the whole program!
Wednesday, 3rd July 2013
Melbourne, Australia
One of the big topics I discuss in my new investment advisory service - Revolutionary Tech Investor - is regenerative and personalised medicine.
These two hot trends fit perfectly into the philosophy of this newsletter too - the idea that you should be positive about and look forward to the future.
That is of course in stark contrast to most of the things you see in the mainstream about the future.
You know what we mean - the irrational fear that rising oceans will drown everyone...that we'll run out of food in some sort of Malthusian Hell...and that robots will kill everyone, just for kicks.
Of course, people have feared the future for thousands of years, so this kind of reaction isn't surprising. But for those 'hoping' for the end of the world, we've some bad news: it ain't happening...
Just one note.
I've seen the government's Medicare eHealth record system promoted as 'personalised medicine'.
Let's get one thing straight. It is not 'personalised medicine'. Or not in the way I and most others in the technology sector think of it.
The Medicare eHealth system is just a sneaky way for the federal government to get you to voluntarily submit your private information to a government database.
Like all government schemes, that's not how they promote it. They promote it as a useful way for you to keep your health info in a safe and secure database...so that doctors and other healthcare professionals can quickly find out your health history and the medication you're taking or have taken.
The reality is that the government is simply getting the kind of information that it would otherwise try to get through the intrusive and compulsory Census questionnaires.
My tip is to avoid the eHealth program at all costs. As always when the government gets involved with anything, it's simply the thin end of the wedge. The government's ultimate goal is to create a UK-style 'Death Pathway'.
Because the National Health Service is so costly to the UK government, it has to set parameters on who, when and for how long hospitals can treat patients.
If the beancounters' spreadsheet says a patient has a low chance of survival from a treatment or that the treatment won't necessarily lengthen the patient's life, the hospital guide the patient towards an early 'exit'.
And by 'exit' I don't mean leaving the hospital to go home. I mean leaving in a box.
I'm afraid that's the result of socialised medicine for you.
As for real personalised medicine, well, that's something completely different...
Lots more on real personalised medicine here:
And to top it all off the ABC’s Sunday Extra weighed in with an almost 20 minute program with Mukesh Haikerwal and David Glance asking what has gone wrong.

The difficult birth of online medical records

Sunday 7 July 2013 9:05AM
It sounds like a fantastic idea. No matter where you are your healthcare provider can access your complete medical history online.
The federal government wants all of us to give permission for our medical records to be available in this way.
But as of 30 June 2013, a paltry 397,000 Australians have registered for one of these 'Personally Controlled E Health Records'.
So, why aren't we biting?
Links to audio and so on are found here:
All in all with advertising in full flight and the commentary collected here there is a lot going on. I have to say I am not sure the whole program is still not as flawed in design as it has always been - with even the NEHTA Clinical Lead saying the whole thing needs more clinical engagement and work!
Docs still do not seem to be happy:
Witness the results of this poll from Australian Doctor:
Are you taking part in the national e-health scheme and writing health summaries for PCEHRs?
- Yes, I am taking part in the scheme and have already written health summaries for PCEHRs. 6.62% (19 votes)  
- Yes, I will be taking part in the scheme, but have yet to write a PCEHR health summary. 29.62% (85 votes)  
- No, I am not personally taking part, but colleagues in my practice are who I can refer patients to. 7.67% (22 votes)  
- No, I will never take part in the scheme and will not be promoting its use to patients.  56%  (161 votes)  
Total Votes: 287
We also have this report:

Australian doctors give patients less control over their e-health records: survey

More than three-quarters of doctors surveyed say sharing electronic health records has reduced errors
Doctors in Australia are more resistant to giving patients’ control over electronic health records than doctors in other countries, according to an Accenture survey.
Accenture surveyed 3700 doctors in eight countries, including 500 doctors in Australia. The survey was conducted during November to December 2012.
Australia’s personally controlled electronic health record (PCEHR) scheme has had a slow start despite support by government and prominent healthcare CIOs.
Most of the Australian doctors surveyed support limiting patients' ability to update their electronic health records. Only 18 per cent said patients should have full access to their own records.
The survey also found 77 per cent of Australian doctors surveyed said that sharing health records electronically reduced medical errors last year. Also, 83 per cent said they actively used electronic medical records and about 70 per cent reported improved quality of diagnostic and treatment decisions by using shared electronic records.
Lots more here:
And of course this blog:

eHealth: The good, bad and ugly

We’ve come a long way with technology in general practice. Technology should make our lives easier. However, in health-IT a good idea can easily go bad. But the opportunities are mind-boggling and we’ve got exciting years ahead of us. Let’s have a look at the good, bad and ugly in eHealth, including cyber insurance, liability issues, telehealth, mobile apps, social media and of course the PCEHR.
PCEHR
The PCEHR has gone ugly. Sidelining doctors and clinical leads didn’t do the project any good. A basic requirement of a successful project is effective stakeholder management. Healthcare evolves around GPs, and if the main stakeholders are not on board for 200%, the project will fail. Meanwhile, the government has started data-mining our patient’s eHealth records. A colleague recently said on an IT forum:
“I demand legislation that simply states something like: Information stored in the PCEHR can exclusively be accessed by health professionals directly involved in the patient’s treatment and exempt from access by any other third-party including by means of subpoena”
I’m not holding my breath here but it’s a clear message, shared by many GPs. By failing to listen to doctors the PCEHR will be added to the already impressive global scrap heap of major health IT fiascos. But the good news is: there are alternatives. Instead of wasting more tax dollars, we should adopt one of the already fully functioning, cheaper Australian shared record systems, like RecordPoint from Extensia.
Lots more here:
As I said there is a lot going on. Meanwhile the system remains its lumbering self.
David.

9 comments:

Anonymous said...

On the ABC’s Sunday Extra program, it was suggested that one way to get around the difficulty of GPs accessing your record might be to bring your iPad to the appointment and log in to your own record to show your doctor.
Hmm, for a billion dollars, and another 80 million support each year for an empty shell system, perhaps it would have been better and cheaper to buy an iPad for each Australian consumer, and let them take photos of their paper records and their sore bits.
An Apple a day keeps the doctor away?

Bernard Robertson-Dunn said...

I have a question.

In the Sunday Extra program and in advertising media, it is claimed that the "consumer" is able to control who sees their record and/or part of their record.

The PCEHR rules (Division 2) specifies access controls that the consumer can set as applying to healthcare organisations, not healthcare individuals.

Is it true then, that consumers cannot limit access by individuals, only organisations?

If this is correct, then the government is being a little economical with the truth when it makes statements like "the consumer can control who sees their health information".

It would seem that the government is giving the impression of a greater degree of potential control (i.e.implying people, rather than whole organisations) than is actually the case.

I think that somewhere buried in all the rules, regulations and legislation, there is a statement that the information in the PCEHR is only to be used when delivering healthcare. I'd like to see what that is defined as. If a nurse is entering healthcare information into someone's health record, are they delivering health care?

In my experience, relying on non-system rules and procedures to control access to sensitive information is a sign of a badly designed system. Think Snowden and Manning.

It all comes back to trust.

K said...

Being economical with the facts is inevitable on TV. You could hardly explain the whole rules.

As for "what is healthcare"? - it appears that we're going to have to wait for case law before we have any real sense of what that doesn't mean.

I don't think that relying on non-system rules and procedures is a sign of a badly designed system. It's inevitable - what system is secure without a layered defense of rules, regulations, policies and procedures around it's administration?

(Maybe this one: http://phildowd.com/?p=85)

Anonymous said...

With respect to who can see my record, I wonder if anyone can answer this scenario.
I register for a record and do not change the default access requirements.
I am admitted to a hospital within Queensland Health in Brisbane – for an operation which I am a little sensitive about sharing with others. They ask me if I would like my discharge summary uploaded to my record and I say yes, because I am assuming that this information may be relevant to future care.
Months later, I have a car accident and attend Cairns hospital ED. I also attend a GP for depression, where I have anti-depressants prescribed in case I feel the need for them. The GP loads a Shared health summary into my PCEHR.
I go to the local pharmacy to have my prescription filled. I attend a local private physio to have treatment. The pharmacy, the physio practice, and the GP are registered and participating in the PCEHR. The GP and the pharmacist are using a Prescription Exchange Service and ETP. Data from all three events is uploaded to the PCEHR. This includes a symptom of ‘depression’, and prescription and dispense data for anti-depressants.
I am feeling much better now and decide not to take the anti-depressants at all.
If I do not change my standard access defaults for my PCEHR, then can the pharmacist and the physio see my full record including the Brisbane and Cairns Hospital discharge summaries, and the information indicating that I have been ‘depressed’ and have been prescribed and dispensed medication for this? I don’t mind the physio seeing the Cairns hospital discharge summary, but not anything to do with my ‘brush’ with mental health, or any details of the Brisbane hospital admission. I don’t want the pharmacist seeing the Brisbane hospital admission details.
Confused, and unable to determine who has seen what and who might be able to see it in the future, or how I might be able to control that, I wonder if I should withdraw from having a PCEHR altogether.

Bernard Robertson-Dunn said...

@K

re: "Being economical with the facts is inevitable on TV. You could hardly explain the whole rules."

I used the phrase "economical with the truth" which is a euphemism and rather different from "economical with the facts"

and re: "I don't think that relying on non-system rules and procedures is a sign of a badly designed system."

It depends on the degree of "relying"

If I am correct about access control being at the organisation level, nobody will know who in a large hospital has been looking at someone's health record, never mind if they were engaged in "healthcare"

AFAIK, in Centrelink systems when a user logs on they have to use two factor authentication. That means they know the ID of person who is using it. If that person runs a query against a database, then there is a log of that transaction. The person doing the query is associated with the data being viewed, with a very high degree of certainty.

Can that level of logging be done in the PCEHR? Not as far as I know.

The reason? Here's a guess. The government has to comply with the Financial Management Act, which is far, far more stringent than the Privacy Act and the Personally Controlled Electronic Health Records Act 2012.

The PCEHR Act 2012 uses the words "reasonable" and "reasonably" 16 times.

The Financial Management and Accountability Act 1997 uses them four times.

K said...

BRB said...

'I used the phrase "economical with the truth" which is a euphemism and rather different from "economical with the facts"'

yes, by intent it is rather different. But up close, they're rather related to each other. :-(

'If I am correct about access control being at the organisation level, nobody will know who in a large hospital has been looking at someone's health record'

Yes. I think that the system designers wanted individual access logged - it comes naturally, right?

But a hospital runs a shared medical record. How can you take a feed into the shared medical record and then compartment that medical record so that only some clinicians can see it, and others can't? I fully understand why hospitals couldn't engage with a system like that. And nor could they function with a system whereby the patient can retrospectively withdraw content from the record. Even individual GPs have a problem with that.

In theory, the patient consents with the organisation as a whole, and they must trust the organisation to manage the access to their record - and the institutions put some work into ensuring that this is done right.

In practice, though, it doesn't really work like that. There's the theory, but then there's the practice when the patient presents with an emergency, and the institution requires consent... this is called coercion in any other context. And presenting for elective surgery isn't any different- where ever you go, you're going to have to consent if you want treatment.

But this is a problem that the medical community is acutely aware of - you know why? because the staff need treatment too. And there's a subset of the medical community who are known throughout the system - these are the ones who solve the problem. Well, who need to solve it, but haven't really figured out their own solution yet.

The pcEHR is a compromise between very different perspectives on trust in the healthcare system. Trust is both required, and absent. At it's heart, the pcEHR is an expression of our quandary: in order to make healthcare more efficient without losing quality (a goal we all endorse), we need to trust each other more, but a variety of inputs (political, social, cultural, legal) are eroding that trust. Who controls a patient's medical record?

btw, in most other industries, if something isn't safe, that means it doesn't happen. For instance, if FAA finds that some systematic error was the cause of the SFO crash, they might ground all or some flights until it is rectified. On other hand, in healthcare, if someone discovered systematic errors in a surgical process, would you therefore stop all procedures of that type until it was rectified? would that save lives?

The pcEHR is imperfect, but we cannot wait until we have a perfect solution to try something. (note: there might be better things to have done than the pcEHR, but the fact that it is imperfect is not ipso facto a reason not to do it). In it's current form, it will suit me and my family perfectly if it's ever fully adopted - and I think we are the vast majority of people. Our health is not perfect - and there are even low grade mental health issues in the family - but trying to control flow of parts of our health information will only hurt us. Open sharing will work best for us

Bernard Robertson-Dunn said...

@K

re:

"'I used the phrase "economical with the truth" which is a euphemism and rather different from "economical with the facts"'

yes, by intent it is rather different. But up close, they're rather related to each other."

IMHO, up close they are very different. The first is distortion of the facts, the second is omission of some facts.

You make some very useful observations. If I may pick on two:

1. The pcEHR is a compromise between very different perspectives on trust in the healthcare system.

2. The pcEHR is imperfect, but we cannot wait until we have a perfect solution to try something.

The first observation indicates that it is a Wicked Problem, as noted in a Public Service Commission publication in 2007: "Tackling wicked problems : A public policy perspective"

http://www.apsc.gov.au/publications-and-media/archive/publications-archive/tackling-wicked-problems

The last conclusion is "tolerating uncertainty and accepting the need for a long-term focus. Successfully tackling wicked problems requires a broad acceptance and understanding, including from governments and Ministers, that there are no quick fixes and that levels of uncertainty around the solutions to wicked problems need to be tolerated. Successfully addressing such problems takes time and resources and adopting innovative approaches may result in the occasional failure or need for policy change or adjustment."

This is very relevant to your second observation.

Yes, the pcEHR is imperfect, but it has been implemented as a big bang, national, one off solution and it is being sold to the community in a dishonest manner.

There is no "broad acceptance and understanding ... that there are no quick fixes", no small scale develop/test approach in order to learn lessons, very little, if any, innovation either in the system itself or in the way the problem is being identified and addressed and not a hint that there is any uncertainty in the whole eHealth strategy.

K said...

@BRB:

I think that DOHA knows this is a wicked problem and the solution is actually only the first step in a long process. But their call seems to be that political imperatives mean they can't be honest. I suspect that a change of government won't help with that problem either. But this problem is many pay grades up in the stratosphere from me

Bernard Robertson-Dunn said...

Re DOHA and honesty.

By not being honest, DoHA runs the risk of losing the trust of the very people who need to trust the system.

Shining a big, expensive light on what they are doing and pretending everything is fine, is not a good idea.

Organic growth is always a better approach to developing and implementing solutions to wicked problems. Unfortunately, such small, slow initiatives don't carry much glory. And people many pay grades up in the stratosphere like their little bit of glory.