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Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"


H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Wednesday, June 08, 2011

A Comment That Really Needs Some Close Reading! It Gets To An Important and Unrecognised Barrier to Success For the Planned PCEHR.

The following long and interesting comment appeared a day or so ago.

This comment is in response to an article I published here:


The comment suggests a critical missing aspect of the NEHTA PCEHR ConOps. The comment is responding to my ideas on what is needed to have Health IT projects actually succeed.

Anonymous said:

I agree we have a governance problem. And since the pcEHR is the big play in the space (whether it succeeds or fails, it seems likely there won't be anything else national for a long time), it's something we need to take seriously.

It seems to me that the ConOps doesn't quite come to terms with the central problem we face trying to build a national EHR: we need to build distributed trust.

I say this because the national EHR is a grand play to reduce the amount of money - and more importantly, the time of doctors and nurses - to provide the level of care that we are used to. It will do this by reducing the amount of time that these people need to gather information - on the basis that collecting the information is what takes time. But we can only do that if the information that is in the system is trusted by the users (all of them). So the central problem with a really scaled EHR is building that trust.

The ConOps doesn't grasp this issue. This is what is says specifically about trust:

"trust is critical for the success of the rollout and uptake of a PCEHR system"

Great. That's exactly what we need out of the EHR. But what kind of trust does the ConOps talk about?

"Trust is one of the many critical success factors for the PCEHR system, therefore it is essential to ensure that:

• people seeking access to information are whom they claim to be;

• information received from a claimed person is from that person;

• information transmitted across networks is appropriately encrypted andhas arrived at its destination point without being tampered with; and

• access to information is appropriately authorised.

A high level of data quality is another essential ingredient in trust around the PCEHR system. High levels of data quality are required to assist providers and individuals in making safe healthcare decisions."

I agree with all that. And there's real challenges there.

But these technical issues are not the core issue - which is how we get people to trust each other. Because right now, trust is not a scalable asset we can rely on. Patients, Doctors, and Nurses trust each other as individuals - to a degree - but that that trust doesn't scale. These groups don't trust themselves as a group, let alone the other parties.

As long as all the parties insist on being gatekeepers for the pcEHR - so that information can only become part of the EHR if both the source agrees, and the patient agrees, and either can subsequently revoke their permission - this is not a trust based system.

When the ConOps talks about "high quality" - what does it mean? The discussion that follows it is very focused on the quality of the data, not the quality of the participations. There is a shout out at the end of the section to clinical governance, but still, this is about data quality, not about really establishing distributed trust.

The ACHI comments on the pcEHR say that eHealth change is really changing healthcare with a "e", and that's the real thing the ConOps doesn't grasp: that in order to build a system that can leverage trust, we need to build the trust, not only in the system, but also between the participants.

But perhaps this is what the pcEHR is about - it's called "patient controlled", because there's no other way for it to even exist as things are; perhaps it's all we can hope for - better than nothing. And there's certainly an argument that if this is all we can have, then let's have it, and hope that it grows into something useful in the longer term.

It certainly seems that we aren't yet ready for the hard discussions that need to occur in our society in order for us to build distributed trust - and these aren't technical, they're social. So I think that we'll have to watch other countries forge ahead and build working systems that they can leverage, while we squabble about the peripheral issues and whine that we can't have both our trust and our freedom at once.

----- End Extract.

I have to say there is not a single point here I disagree with and I also believe that the challenge of actually achieving the necessary levels of trust will be very, very difficult. I do recognise that there are examples of working professional trust networks (including clinicians) but that trust networks between strangers is a real challenge with only a few examples of success (maybe like eBay)

It seems to me that in the 21st Century in Australia cynicism, fear (of the future with concerns on a renewed CFG, new taxes, a collapsing environment, ineffective Government and so on) and scepticism are at levels as high as I have experienced in my short 60 years. Establishing trust in a situation where we are told of new cyber-threats and see apparent policy paralysis in everything from what to do about the Murray-Darling Basin to Gay Marriage is going to border on the impossible.

I know many are confident that we will just ‘muddle through’ but I have to say that just recently my faith in muddling has become pretty stretched.

In the situation where bi-partisan action seems to be almost impossible I really wonder where the consensus to undertake major initiatives in areas like e-health will come from?

This said the writer is right. Building trust is a major part of what is needed. It is the how we can do that I am not sure about!



Anonymous said...

This Government has destroyed any level of trust with providers through its shonky Wave 1 deal with GP Partners and the DSTC folk and then badly mishandling Wave 2 submissions and rejections.

Can you believe that the Wave 2 providers who submitted Grant Submissions and were rejected have still not received any sort of feedback. That is around 90% of the providers who submitted responses. Presumably everybody who was engaged in the PCEHR process put a response in. And still nothing. This strikes me as a massive change management faux pas.

And a massive white elephant.

Anonymous said...

The failure to engage with those who did not succeed in Wave 2 is a tremendous mistake. I'd wager history will record it as a fundamental tactical blunder.

I'm assuming that they constitute the bulk of the Australian E-healht community. They were all putting up their hand to help and participate. They have been told to go away. They have been told that they are unimportant, because no one has bothered to talk to them, explain the outcome. No one has looked to engage them in other ways that would contribute to the success of the program. THey by implication are unimportant, and not part of the inner circle. They have been left to feel completely isolated and uniformed. What a mess. What a waste.

Anonymous said...

Those with long memories will recall more than one occasion over the last decade when the comment by Wednesday, June 08, 2011 8:03:00 PM has been the norm.

Those with short memories or only recent experience will be affronted, disgusted, and angry. They will feel as though they have been used and abused. Whatever trust they may have had has been destroyed. They will go away and join those, who through similar experiences, went before them.

Anonymous said...

"The failure to engage with those who did not succeed in Wave 2 is a tremendous mistake. I'd wager history will record it as a fundamental tactical blunder."

It does depend on the actual project that was proposed. Some may be best not engaged with ;)

Personally, being the principal of an unsuccessful Wave 2 application I felt a little deflated about the lack of engagement considering the amount of effort and also the merit of what we proposed. But in many ways we are now relieved as being successful would probably have been a poison chalice!

NEHTA does have the opportunity to engage productively with the various proposed projects. To an extent that seems to be occuring in our situation BUT it is early days.

The concept of "inner circle" is in evidence - and in many ways is not a bad thing if it is nutured and developed - rather than discarded and no group learning and corporate memory developed. Sadly NEHTA does seem very short on corporate memory!

Hercules said...

"When the ConOps talks about "high quality" - what does it mean? The discussion that follows it is very focused on the quality of the data, not the quality of the participations."

My understanding of the ConOps is that it is really talking about "Data Integrity", the idea that the data (syntax and semantic) is understood, and persisted throughout the interconnected world of the PCEHR including through transforms and translations.

The issues of real "Data Quality" are far broader and deeper than the PCEHR can (or should) address, and run all the way back in to how we do clinical practice.

Anonymous said...

Some of these comments are downright nasty. What a bitter bunch of self absorbed losers you sound like.

Stand back while we build the world's great eHealth system and scratch your heads in amazement at how we did it!

Could it really be that we are so stupid and you are so smart?

Anonymous said...

Wow, with such a track record of success by Nehta and just a rosy history of government run big bang IT projects I can understand where you are coming from. However no one I know in Nehta thinks it has legs so you must come from management....

Anonymous said...

"Could it really be that we are so stupid and you are so smart?"

Really? "We", "you"? Don't you see the value in engagement, to create an "us"?

Haven't you just proved the point of many of the early posters?

Where to begin. I suggest the dictionary, perhaps starting with "hubris".

Anonymous said...

Anonymous said...

"Could it really be that we are so stupid and you are so smart?"

Actually yes, it really could be, depending on who you think "we" are, and who you think "you" is...

Time will tell soon enough!

Anonymous said...

"Stand back while we build the world's great eHealth system and scratch your heads in amazement at how we did it!"

Oh good grief! Well you have managed to drag the intellectual level of the debate down to that of a 5 year old - perhaps that was the secret of your successful bid - even NEHTA could understand it? I personally can't wait for the "world's great eHealth system" - I am scratching my head already.

Anonymous said...

"Some of these comments are downright nasty. What a bitter bunch of self absorbed losers you sound like."

- downright nasty? Really, I've just read through the comments on this thread. Strongly felt? Yes. Harsh? Maybe. Nasty? I don't think so!

- bitter? I think it's fair to say that many of the commentators on here could easily be characterised as bitter. After all, many of them (not myself included) have been involved in Australian Health IT for many years, have had successes, failures, and of late have made recommendations and given advice that, over time, have proven to be correct (but were not listened too at the time).

- self absorbed? I'd suggest that that is completely wrong, although (see above comment on recommendations not being taken forward) it's very easy to get stuck in your own little box when those "in charge" don't / won't listen

- losers? Now who's being nasty?

To be honest, the posting I'm responding too sounds like more of a rant to attempt to shift the focus of these blogs and make they seem to be full of vitriol (when, at least my view, is they're more full of exasperation).

Anonymous said...

Its probably time to look at the evidence. Nehta feel they are somehow superior to everyone else working in the field it seems. They, combined with DTSC, Heathconnect and Nehta Mk1 have had billions of funding that the rest of us have not had. Now what have they produced that actually works and is in use? Compare that the all the existing eHealth that is really happening.

The NEHTA track record is quite poor by any reasonable yardstick. The title of "Ivory Tower Architects" is well deserved. They survive because of the PR department and not because they have achieved anything. Its time to withdraw direct government funding for innovation as it never works.

Anonymous said...

"Stand back while we build the world's great eHealth system and scratch your heads in amazement at how we did it!"

I have no doubt that with the funding available that you should be able to build the world's great ehealth system! BUT will it actually provide any benefits to the health care of the Australian people? Will it improve outcomes? Will it be more effective or efficient? Will it improve the mutitude of preventive programs? Will it build on the well documented improvements in diagnosis and treatment that have occurred over the last 50+ years of health care in this country?

Or will it be a fantastic WHITE ELEPHANT e-Health system that costs squillions to support and run ...... and provide for lots of employment in the IT & PR sector with no actual benefits it health being able to be defined?

I am well past being nasty in this - this is a remarkable complete waste of my tax money!

Anonymous said...

The Politically Correct Elephant Here in the Room (PCEHR).
All I have to say is tusk tusk!

Anonymous said...

Great new definition above for NEHTA as Ivory Tower Architects => NITA - the National Ivory Tower Authority. That must make DoHA the Department of Halting (Halton) Anything.