Thursday, July 14, 2011

I Think I Have Now Worked Out Why The PCEHR is A Fundamentally Flawed Idea! See If You Agree.

For a long while I have been writing about a range of aspects of the conceptual basis of the PCEHR, bit in doing this I have always had the nagging feeling I have not quite got to the absolute core of just what is wrong.

Before getting to the current level of clarity I had expressed concerns about the issues of creating and operating parallel and tenuously linked systems, about the problems of medico-legal accountability as well as about all the issues of information integrity and currency that the PCEHR proposal throws up.

All this was separate from the range of governance, privacy and security issues the PCEHR proposal raised and these were again separate from all the issues around the lack of an evidence base to support the approach being proposed. It is clear none exists to support the specific proposal and that the evidence to support so called ‘untethered’ Personal Health Records (PHRs) is equally tenuous.

See here:

http://aushealthit.blogspot.com/2011/07/reaction-roundup-and-analysis-of-demise.html

And here:

http://aushealthit.blogspot.com/2011/07/fascinating-information-on-adoption-of.html

Additionally, of course we also have the practical issues of capability and practicality of delivering even a small log on screen for consumers to enrol in their PCEHR with any meaningful content behind it.

Yesterday I was involved in a quite animated discussion with some members of the College of Health Informatics (who I won’t name to avoid any possible embarrassment on their part - but who I thank for helping me reach a new level of understanding).

The discussion was triggered by a request by NEHTA to review some specifications of the PCEHR Health Summary and Event Summary.

In a moment of great insight someone asked “just who is this specification for”? Is it for the clinician or the consumer?

The group quickly grasped just how important and fundamental the question was and also that it is obviously a quite fundamental problem. As I have written previously there is a vast difference between systems designed to be used by professionals and those designed to be used by consumers. (Think of the difference between IRESS and Quicken or the differences between PhotoShop and Microsoft Paint).

A system designed for use by clinical professionals is an utterly different beast to the system that might be designed to help a consumer keep track of their basic health information and the health story. As a consumer a set of laboratory results will most likely be a confusing jumble of numbers where as to a clinician they trigger a lot of knowledge and interpretive experience. Equally a MRI scan can provide an interesting image to a consumer and a level of valuable insight to the clinician.

The bottom line is that creating a system to be used by consumers and clinicians is just a fundamental nonsense. Any system targeting both groups will satisfy neither, inevitably. Anyone with even a basic understanding of system design and implementation will agree with me on this!

There I feel better and now know the whole thing is just a flawed concept that is doomed to fail. The docs won’t use it and the patients will be confused and alarmed by it. What a raving success it is we have coming our way!

Just what NEHTA and DoHA need to do to get this back on the rails is a whole different question - and one they better start working on right now!

David.

12 comments:

Anonymous said...

I'm sure I read something to that effect in the PCEHR ConOps submissions by a doctor who said that that the PCEHR should be fed by the SEHR and that eventually they would all coalesce which seemed to make a lot of sense but unfortunately I can't find it now.

Anonymous said...

“A system designed for use by clinical professionals is an utterly different beast to the system that might be designed to help a consumer keep track of their basic health information and the health story.”

To some degree what you say is correct but not entirely so.

I have a prepared a structured snapshot of my own health and medical record. Structured is the operative word which I won’t define further here.

I recently had cause to be admitted to hospital for a small procedure and overnight stay. Everyone who had cause to access my record (specialist, residents, clerical, nursing and subsequently my GP) marveled at the clear, comprehensive, logical, organized, structured record.

It became their baseline reference document. The repetitive questioning has stopped. They can find what they want when they want it. They can read what they see. Ever so occasionally an isolated question is proffered.

Prior to that, on two earlier occasions, I would be subjected to the mind numbing experience of answering questions repeatedly put by residents, nurses and others.

I had a triple antigen booster last week (whooping cough vaccination was the main reason). I updated my record. The record is complete.

It’s not possible to achieve the same outcome electronically between multiple service providers because they all use different systems, because there is no one reliable accurate reference point for holding the record, and because today there is no way of keeping the record up-to-date when it is to be fed by multiple, disparate, fragmented sources of information.

Anonymous said...

The first question should not be "who will use the system" but rather "what is the problem we are trying to fix". I do not believe that this question has been adequately addressed. It seems that there has been a 'build it and they will come' attitude as opposed to a problem analysis process.

Is it information flow between those that treat patients that we are trying to achieve? I guess so. What information needs to be shared? Well, when I see a doctor for the first time the questions are; what problems do you have, what allergies do you have and what drugs are you taking. Not a complete list, I’ll grant you that, but more than enough information for me to be treated safely.
If there is such a huge demand for information transfer, then let’s start simply; allow a basic text file to be stored on a Medicare card. Those who want to use it will and those that don’t, won’t. It’s patient controlled, no privacy issues and only standards of encryption required. We could then actually measure the usage, quantify demand and identify required enhancements.
Normally, you eat an elephant one mouthful at a time. It seems to me that this process is trying to design a digestive system that will enable you to do it in one go. And the design is based on a lot of theory and no practical assessment.

Grahame Grieve said...

> I have a prepared a structured snapshot of my own health and medical record

How have you prepared this, and how do you make it available?

Anonymous said...

Grahame
It is in a word document. It is printed and given to the hospital or doctor as required.

No there is no thumb nail. Yes it uses a few more trees. Yes it has a structure. It saves them time. They trust it. It works. It’s accurate.

It shows the most recent "last updated on dd/mm/yyy" at the top.
1. Personal ID Data including pertinent 'ID numbers' & Blood Group
2. Episodic Dates (reverse chronological) with reason & service provider
3. General Health
4. Allergies
5. Immunizations
6. Medication Data
6.1 Current
6.2 Discontinued
7. Family History
8. Past Illnesses, Procedures and Operations
9. Investigations (Date, Test, Results, Abnormal range highlighted))
9.1 Biochemistry
9.2 Cardiology
9.3 Endocrinology
9.4 General Chemistry
9.5 Haematology
9.6 Histopathology
9.7 Imaging

I think it reasonable to expect of everyone who purports to have an interest in the area of the EHR, or however you want to describe it, also has readily available an accurate, up-to-date, well structured record of their own personal health and medical information. Don't you?

Grahame Grieve said...

thanks. I don't think many people would have one - I don't - I don't have healthcare encounters regularly enough to justify it.

How do you maintain the investigations? The content of that seems a little dynamic to justify it? I would just store the high points, where I could get them. They give us our x-rays (film or cd now), but not the reports.

Other than that stuff, I'd think we could post a word template with some relatively straight fowrard instructions somewhere, and anyone could fill out their own? It's got to be better than nothing?

Anonymous said...

There is a tension in the PCEHR trying to be a PHR and an SEHR. All the documentation is positioning it as being a PHR first and SEHR second. We all know that doctors won't use a PHR. We, however, think there is something useful in a SEHR. Maybe all we need to do is change the emphasis of the PCEHR to be a SEHR first and a PHR second.

Anonymous said...

Yep "all we need to do is change the emphasis of the PCEHR to be a SEHR first and a PHR second" that's the only way to do it. But hey, the problem still remains the same - overcoming the obstacles inherent in building an SEHR. Back to first base once more. In short - NEHTA has achieved so little and spent so much and we are all the poorer for it.

Anonymous said...

Grahame you said you “don't have healthcare encounters regularly enough to justify it.”

Let me share this with you. I haven’t had a GP for 50 years – fit and healthy in every way. But one small episode recently sent me straight to a GP and an early diagnosis thank goodness. Boom, bang – no delay - zip zap let’s move - GP to Imaging, Pathology, Biochemistry, then to Specialist to Imaging, to Pathology, then to Hospital, to Anaesthetist to Theartre, to Pathology, to Specialist, to Pathology, to GP, to another Specialist, to GP. Once again back to fit and healthy in every way.

You would be amazed at how much clinical data the above generates and even more amazed at how much money is spent in the process of doing so.

As for X-Rays (cd) and investigative reports – I insist on having a copy sent to me and no-one has ever objected.

In short I am in control. I do not expect to have too much involvement with the system but if I do – here’s my complete record.

I am genuinely concerned about all these computer pundits, IT experts and consultants, including everyone in NEHTA, who all claim to know what is needed and how it should be all put together and how it should be used when they haven’t even been through the basic steps of compiling their own medical and health information which would give them some real insight into the issues.

Anonymous said...

"I am genuinely concerned about all these computer pundits, IT experts and consultants, including everyone in NEHTA, who all claim to know what is needed and how it should be all put together and how it should be used when they haven’t even been through the basic steps of compiling their own medical and health information which would give them some real insight into the issues."
Well, of course, that ought to be a killer punch.
But, since the entire healthcare industry runs on billable hours and salaries, it's an argument that should be buried without further comment.
Another problem is that the public is nowhere near literate enough in general, let alone in health, to be capable of compiling their own records.

Anonymous said...

"But, since the entire healthcare industry runs on billable hours and salaries" as Saturday, July 16, 2011 4:36:00 PM said one assumes he means that it would be best if we canned the whole ehealth shebang on the grounds that it might save time which would cut down the billable hours and mean doctors would have to see more patients.

tgk21277 said...

Following on from my snipe about "billable hours" (Saturday, July 16, 2011 4:36:00 PM) I meant it's hard to see how the Govt can extract the political capital to proceed with the SEHR when the evidence is clear that, not only the voters, but, experts in the field have not made personal commitment to collecting their own records.
As with any plan for putting a new system in place, there are perverse incentives one way or another, and you'd think, with something as sensitive as personal health records, there'd be some discussion of that out in the open.
Hat off to the contributor (above) who has gone to the trouble of putting stuff in a document. How will orthodox practitioners deal with enthusiasts who have years of naturopathic interventions, or astrological readings, and present these with the expectation they will be considered?