Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Monday, June 07, 2010

What Should We Think About This Portal Idea? Worthwhile or Not?

The following article appeared a few days ago – expanding nicely on my notes from the Senate Estimates hearing last Thursday (June 3, 2010)

E-health records to be accessed via 'portal'

  • Karen Dearne
  • From: Australian IT
  • June 04, 2010 12:00AM
THE Rudd government's much-vaunted "personally-controlled" e-health records system will be delivered via a "portal", but with health bureaucrats still "mapping out the build" the option for outsourcing to platforms like Microsoft's HealthVault or Google Health remains on the table.
Queensland Liberal Senator Sue Boyce pushed hard for an explanation of the proposed personal e-health record system at a Senate estimates hearing yesterday, but little detail was forthcoming.
In last month's federal budget, Treasurer Wayne Swan and Health Minister Nicola Roxon announced an allocation of $467 million over two years to fund the creation of a personally-controlled e-health records system.
Health spokeswoman Raelene Thompson said the intention was for patients and doctors to access personal records through a web portal, from any location including a home PC.
"The concept is for a voluntary system, and only those people who wish to use an e-health record will have one, and what goes into that record and who is allowed to access it will be within their control," Ms Thompson said.
"So, if you have chosen to be part of the system, you will authorise your health providers to have access."
Senator Boyce referred to a post-budget opinion piece in The Australian that queried whether the private sector, Medicare or some other government body would run a national e-health system, and asked Ms Thompson to confirm whether Medicare would develop the system.
Lots more here:
The issue is also covered here

E-health Records to be Delivered Via 'Portal'

The Rudd government's personally-operated e-health records system will be released with the help of a "portal".
Queensland Liberal Senator Sue Boyce called for a detailed report on the proposed personal e-health record system at a Senate estimates hearing held yesterday, however, he only got a little detail.
In last month's federal budget, Treasurer Wayne Swan and Health Minister Nicola Roxon posted to extend $467 million over two years in a bid to financially back the development of a personally-controlled e-health records system.
More here:
While looking around I also noticed this (which might just be taking it a little to far!):

The days are numbered for self-trackers

PETER MUNRO
June 6, 2010
PEOPLE trying to reduce stress and anxiety and improve their health are becoming "self-trackers" – using modern technology to tally every aspect of their lives.
They plot minute data including working hours, sleep, exercise, sex, diet, productivity and weight.
Sometimes called "personal informatics", adherents use heart-rate monitors, websites that record their alcohol use, calorie intake, mood or sexual encounters and mobile phone applications that tally sleep patterns.
Typically, self-trackers then share the information through social media, with The New York Times recently calling the trend "constructing a quantified self".
Self-trackers usually start with a goal, but then can't stop recording. One man kept an archive of his ideas for more than 25 years, now numbering more than 1 million.
Emmy Kerrigan, 35, sees her life as a stack of numbers assembled in to a manageable whole. She runs a website development company in Cairns and tracks her working day in six-minute increments, including coffee and meal breaks, and time spent on Facebook.
More here:
I have to say ‘personal informatics’ was a new one on me!
Since my original post (found here):
There have been a substantial number of comments (found here):
There were some very useful comments among them.
The bottom line is that what DoHA seems to be talking about is having themselves provide what the rest of the world describes as a Personal Health Record (PHR) provided by Government for those who want it.
The National Health and Hospitals Reform Commission (NHHRC) came up with the idea of the Personally Controlled EHR (PCEHR) in its final report which just preceded the Rudd / Roxon consultation tours all around the country during last year and earlier this year and led to the trickle fed National Health Reform agenda announcements earlier this year.
You can read all about this here:
Now the NHHRC web site has since been canned – with all the submissions etc.
You can however read my submission on the topic here:
and some more commentary here:
(Here we get evidence baby boomers are not all that convinced about PHRs and the effort required to maintain them.)
The bottom line here is really very simple.
First, if provider systems capabilities, deployment and connectivity are not addressed first there will not be a great deal of useful information to populate the portal.
Second, doing a PHR is something you do after you have all your basic infrastructure, applications and communications largely in place.
Third, the evidence just creating a PHR portal for the 1/3 of patients who might use is very unlikely to make any great difference to the health system without the prior steps. (we know from Kaiser’s experience only about a third of their population even activate the PHR).
So what is happening here is a cynical ploy to be appearing to do e-Health by doing something very easy, by outsourcing a PHR portal to Microsoft, Google, IBM or whoever, while the hard work – which will genuinely take years is quietly put on the backburner until after the election (or the one after that).
If there is something more useful, that might make a real difference to people’s lives, in the planning then it is time the public was let into the secret.

The bottom line is that you fix IT support for healthcare providers and then make the information available for their patients. Not the other way around!
This is the ultimate ‘cart before the horse’ initiative if ever there was one!
David.

6 comments:

John Johnston said...

The usefulness of a personally controlled electronic health record will be determined by the veracity and completeness of the data it contains. This means that parts of the personal health data must be clearly identified as having been contributed by authorised clinical providers and differentiated from self management data and other data contributed by the patient. Without this there will be little interest from clinicians who are authorised by the patient to view the data to do so. It also occurs to me that the structure of a personal health record should present no great challenge. We have a plethora of electronic health summaries out there that are fundamentally the same and we have the substantial legacy of the paper-based RACGP problem-oriented medical record. With the patient contribution of supplementary family, social, and self-measured health information we have all the elements to secure engagement all the way from the health and fitness enthusiast, the patient with early onset of disease, through to the baby boomers who are pretty good on the keyboard and certainly want to live past the average lifespan that the statistical boffins have offered them.

Anonymous said...

John Johnston has succinctly summarised years of debate, hundreds of millions of dollars of research and development and an untold number of ad hoc initiated government ehealth projects with the following pithy statement:……… “the structure of a personal health record should present no great challenge.”

He is not alone, in that many health informaticians would probably agree with him.

However, John’s view of the world raises TWO very important questions which must be answered first and foremost:

1. WHY has it not as yet been done here in Australia?

2. WHAT are the obstacles preventing the development of the “personal health record”?

Anonymous said...

Perhaps he knows something the rest of us don't know!

Anonymous said...

Hopefully, having made such a bold statement, he will be prepared to share with us why he thinks the structure of the electronic personal health record doesn't really present much of a challenge, unless he was being 'a weeny bit tongue-in-cheek"!

Anonymous said...

The challenge is getting agreement. If you put a number (say 6) of very experienced people in a room for a day you could probably come up with a reasonable plan, but there would still be arguments.

Add the rock star Nehta gurus with no experience and a few doctors with no IT experience to the mix and we are light years away from agreement.

This is one of the issues, Nehta and Doha keep introducing new "experts" with no deep expertise who want to start from the beginning yet again and we are back to square one.

If Nehta don't get their act together soon all the people who know how to do it will have died of old age.

Dr Ian Colclough said...

I find it increasingly troubling that if the comments and contents of this blogspot are anything to go by one has to assume we are still very close to the beginning of the journey whilst the horizon up ahead continues slipping further and further away. Where are we at today? How much progress has been made?

It is worth revisiting the question asked in April 2006 "Is NEHTA correctly positioned to fulfill its destiny?"

http://aushealthit.blogspot.com/2006/04/nehta-interoperability-framework.html

NEHTA appears to be evolving into the nation's leading R&D organisation focused on HealthICT.

If this assumption is correct it will probably be many years before the marketplace and indeed industry will be able to avail themselves of the benefits which may flow from NEHTA's R&D. In that role NEHTA has many complex problems to solve; problems that the rest of the world has wrestled with well before NEHTA was born and will continue to wrestle with well into the future.

There are no guarantees that NEHTA will deliver acceptable workable answers. In many instances it won't be able to because, as it evolves in its R&D role, it will need to establish further projects to wrestle with new and complex problems as they emerge from the maturation of its current R&D activities.

The ICT industry needs to work closely with NEHTA but not be dependent upon it for outcomes. The jurisdictions and potential end-users should support NEHTA's work where politically and commercially practicable but not allow themselves to be seduced into thinking NEHTA will deliver solutions to all their problems - this year, next year or five to ten years hence.

Rather, the jurisdictions and potential end-users should get on with business as usual and not wait for a magic wand to be waved from above. They should view NEHTA as an R&D organisation with a worthwhile purpose, hopefully one day providing some practical answers which industry may be able to embrace in a commercially pragmatic way.

Ian Colclough
Integrated Marketing & e-Health Strategies