Thursday, December 12, 2013

This Really Reflects Just How Wrong The Design Of the PCEHR Is. Sad That.

This appeared a few days ago.

The Rules And Tools Of Patient Engagement

12/5/2013 09:45 AM
Doctors must capitalize on patient curiosity about their own medical records.
For generations, doctors have been saying we want our patients to be more involved in their care, since we know the value engaged patients play in improving outcomes for many preventable illnesses, from heart disease to diabetes. But today, most doctors are not adequately using an available tool to help patients take ownership of their care: the electronic medical record (EMR).
A new Accenture survey shows that the majority of US consumers (84%), armed with their smart phones and home computers, want real access to their electronic medical records. Many individuals (41%) would be willing to switch doctors to have it. But at the same time, just over one-third (36%) say they have full access to their EMR. In contrast, a similar survey of physicians shows the majority (65%) believe patients should only have limited access to their electronic records.
These differing points of view are reminiscent of the time Elaine tried to steal her medical chart on an episode of Seinfeld. Even so, I would argue that patients and doctors can find some common ground.
These trends, as well as other factors, are shifting the role of an EMR system from a mere clinical repository to a platform for shared decision-making between doctors and patients. In this way the process adds transparency and a far more constructive collaboration to the doctor-patient relationship. Increasingly, consumers will seek tools for addressing these two key areas, but they need not exist together to be effective.
Lots more discussion here:
What is clear from this survey is a point I have made a few times before.
The things patients value with access to an EHR record are many of the things the PCEHR will never to. Pretty sad no one asked to few experts before the program was kicked off.
David.

9 comments:

Bernard Robertson-Dunn said...

From reading the publicly available material this survey makes a lot of assumptions about health information, just like the PCEHR ConOp did. For starters, they both assume that the information in an EMR/EHR is accurate and complete.

Maybe someone should ask "is it worth having an EMR or EHR if the information cannot be relied on to be complete and accurate?"

There are many other questions never asked, let alone answered, so it's no wonder the PCEHR "solution" is not being adopted very quickly.

And when those unasked, unanswered questions do get asked and the answers are incompatible with the "solution", what happens then?

Terry Hannan said...

David, at the risk of being shunned because my IT message machine is on fixed shuffle I am posting again into the public arena (with permission) the wonderful story told by Lawrie Weed in 1989!
Prof. L.WEED – PATIENT
In the latter regard, I remember the day in a medical centre on a ward with a modern information system when they wanted to present a patient to me on rounds.
I said “ Do not present a new patient: tell me who is going home today”.
The nurse volunteered the name of a middle-aged woman who had Lupus for 10 years. I suggested that they give me 15 minutes with the patient and then they could return for discussion.
I asked the patient to tell me all about each of her problems. She knew very little about the medical problems.
“ Do you have a copy of your own medical record?”
“No”
“ Are all your medications in your bedside stand, and does the nurse come around at regular intervals to see if you are taking the right ones at the right time?”
“No. The nurse just comes with little paper cups with pills in them, and I swallow whatever is there.”
“ Do you know what a flow sheet is – what parameters we are trying to follow – what end points we are trying to reach?”
“No.”
At this point I called the staff back together and told them what I had found. Their reactions were:
“ We never give patients their records.”
“ We do not have time to give the medicines that way.”
“ It would not be safe to leave them her with them unattended- she is on many powerful drugs.”
“ The patient is not very well educated and I do not think she could do all the things your questions imply.”
I then said:
“ But you said she is going home this afternoon. She lives alone. At 2 PM you will put her in a wheelchair, give her a paper bag full of drugs, and send her out the door. Are you going home with her?”
“ No. Is her management at home our problem?”
“ You just said she could not handle it – who will do it?”
“ The patient may not seem well educated or very bright to you, but what could be more unintelligent than what we are doing?”
We must think of the whole information system, and not just infinitely elaborate on the parts that interests us or fit into a given specialty. Patients do not specialize, and they or their families are in charge of all the relevant variables 24 hours a day, every day. They must be given the right tools to work with. They are the most neglected source of better quality and savings in the whole health care system. After all:
1. They are highly motivated, and if they are not, nothing works in the long run anyway.
2. They do not charge. They even pay to help.
3. There is one for every member of the population.”


Bernard Robertson-Dunn said...

Terry,

Good story. This scenario and many others should underpin any eHealth initiative. I haven't seen any scenarios in the public domain for the PCEHR so it's difficult to know what they have planned for (if anything)

The L Weed story reminds me of another, less specific one.

If you want to move an oak tree from one field to another, the best way is to take a handful of acorns and plant them at the new location.

Any attempt to move the existing tree will probably kill it and at best all you will have is an old oak tree in a different place. The acorn route allows you to select the best sapling, in the best place and the best chance of a long life.

Or, to summarise - start small, with many options and grow. That way you avoid the shock of rapid change and can select and adjust things as circumstances change.

The only thing a big bang approach does is create a big bang. People don't like big bangs.

Anonymous said...

Bernard,

..."start small, with many options and grow"...

I think you'll find if you read the historical Hansard transcripts from Senate Estimates that Prof. Halton and her NEHTA colleagues believe they are doing exactly this in the way they are managing and funding the PCEHR.

As clearly stated by the Hon Tanya Plibersek herself, the over $1B spent on the PCEHR is a "rounding error" in the overall Federal Budget.

It is all relative and subjective and what looks like a disastrous Big Bang IT project failure from the outside, on the inside I suspect it is viewed thus far as a resounding success and an inexpensive one at that, when juxtaposed with the colossal numbers of taxpayer waste coming out of the NBN review.

Success, especially in the complete absence of objective criteria, is truly held in the eye of the beholder, no matter how self-deluded that beholder may appear to be from the outside!

I wonder how many future redundant Holden workers have PCEHR’s with uploaded health summaries, and if they’re wondering right now would the $1B spent on the PCEHR have been better expended saving their jobs and their Australian based car industry??

Bernard Robertson-Dunn said...

Anon:

"I think you'll find if you read the historical Hansard transcripts from Senate Estimates that Prof. Halton and her NEHTA colleagues believe they are doing exactly this in the way they are managing and funding the PCEHR."

If you assess something on a financial basis and with respect to other financial outlays you might come to that conclusion.

However, if you understand dynamic systems and the dynamic nature of problem solving/solution development, you are not likely to arrive at the same conclusion.

The PCEHR is a big bang project because of the step change inherent in their decision making. It has been decided, by someone unknown to me, that the PCEHR is to be a single, monolithic, centralised, IT system with a single purpose - to make access to an individual's health records much easier.

What Ms Halton and her NEHTA colleagues believe is important only to the extent that it informs me of their competence or otherwise.

Anonymous said...

"However, if you understand dynamic systems and the dynamic nature of problem solving/solution development, you are not likely to arrive at the same conclusion."

Bernard, I believe you've missed the point entirely!

This isn't about your supposed knowledge and expertise in "dynamic systems" and the "dynamic nature of problem solving/solution development"!

This is about the reality of the PCEHR situation...

Critising DOHA and NEHTA and telling them they should be doing this (what you're recommending) isn't a true criticism when in their words, deeds and actions they think and believe they are doing exactly what you're telling them they should be doing with respect to the strategy, design, management and operations of the PCEHR.

I would argue the PCEHR is in no way shape or form a "step-change" for the healthcare sector as it has had absolutely no demonstrable or measurable "change" and/or "impact" on the healthcare outcomes and operations of Australia's healthcare system whatsoever.

This is exactly the problem and an artifact of DOHA and NEHTA's go lightly, softly and incrementally in rolling out the PCEHR through Australia's healthcare sector. Their words and their intent as expressed repeatedly in the Senate Estimates transcripts...

Ironically your posted criticisms on the design and handling of the PCEHR may well be viewed internally as validation and encouragement that they are going about things the correct way with respect to the PCEHR, which is far, far from the reality of the situation...

They (DOHA & NEHTA) need to be held accountable to the facts, as dismal as they are, as each of our "opinions", no matter how well informed or intended they are, accounts for zip when they (DOHA & NEHTA) are the sole monopolists for how taxpayers funds are being allocated and squandered on ehealth at all our expense!

Bernard Robertson-Dunn said...

Anon said:

"Critising DOHA and NEHTA and telling them ... "

I don't and can't know what DOHA and NEHTA think or say internally and I'm not trying to tell them anything, I'm trying to get through to others.

And I agree totally with your last paragraph.

Dr Ian Colclough said...

Bernard Robertson-Dunn said...
"I don't and can't know what DOHA and NEHTA think or say internally and I'm not trying to tell them anything, I'm trying to get through to others."

Correct Bernard - precisely so.

The problem here is that the 'others' ie. industry practitioners, vendors, peak bodies and those on this list, are not listening acutely and they do not know they are not listening acutely.

In fact, whilst they think they are listening they are doing so through the amplifier of vested interest restricting their capacity for objectivity and analysis of motives, thus limiting their ability to think, work and speak together as a united team with one voice and one goal; lacking objectivity and united leadership. This has always been so.

DOHA and NEHTA, on the other hand, may well believe their rhetoric and may well be convinced they are doing the right thing and acting in the best interests of all whilst responding, as 12/14/2013 01:02:00 PM said, ........ "when in their words, deeds and actions they [DOHA and NEHTA] genuinely think and believe they are doing exactly what you're telling them they should be doing with respect to the strategy, design, management and operations of the PCEHR." Few would really know whether that is so.

Bernard Robertson-Dunn said...

When Anonymous said...

"Bernard, I believe you've missed the point entirely!" ...

(S)he's sort of correct, in the sense that the point I was making is not central to the issue of success or failure of the PCEHR.

There is so much wrong with the PCEHR that we (I?) can spend a lot of time looking at all the weaknesses rather than focus on the fundamental fault - which, IMHO, is the lack of understanding of health information.

So, here's a summary of my position:

There is no such thing as Health IT, only IT. However, it is possible to use technology to achieve better health outcomes, if implemented with care and appropriate thought.

The only thing that really matters is health information. I have seen no evidence that tells me that those who have implemented the PCEHR have any understanding of the Australian health information environment; what it is, what can be done better and the issues associated with implementing health information systems.

The consequence is that the technology that has been implemented will not properly manage said information and will not deliver improved health outcomes. Not by accident and not by incremental changes to the technology.