Quote Of The Year

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

Friday, November 24, 2017

It Looks Like The New National Cancer Registry Is Still Struggling!

This appeared last week:
13 November 2017

Data delays hinder cancer register

As the Department of Health delays the rollout of the National Cancer Screening Register yet again, clinicians are being urged to be aware that women’s clinical histories may be separated between state and national registers for several months. 
The transition from two-yearly Pap smears to five-yearly HPV testing has been almost universally praised as life-saving and cost-effective, but the rollout has been beleaguered by repeated delays and cost blowouts. 
Now another partial delay to the program has been confirmed by Department of Health deputy secretary Paul Madden in the October 26 Senate budget estimates hearing. 
As of December 1, women will begin HPV testing and the test results will be tracked on a national register. But the data migration of women’s histories from individual states and territories will not be collated until into the next year, with full functioning of the program promised by the first week of March. 
Several sources speaking to The Medical Republic, who asked not to be named, expressed concern that there was confusion over the staggered rollout, and limited guidance in terms of following up women in the transition period. 
This would be a particular concern for women from interstate or those new to the practice, for whom doctors may need to call state registries over the transition period to ensure they have up-to-date information to provide women with the most appropriate management. 
The full scope of the national program, including the ability to mail out reminders, the telephone and fax system, an integrated and complete history and the analytic capability to ensure women were put onto the right clinical pathway, would not be up and running until March, Mr Madden said. 
Women who have a positive result will be followed up within eight weeks, and other follow-ups take place 12 and 16 weeks after the test. By this stage, the complete program should be operating, Mr Madden said. 
Sources have expressed concern to The Medical Republic that women’s safety could be at risk if continued difficulties with data migration delay the rollout further, impeding the national register’s ability to send out recall notifications within those windows. 
More here – including AMA comments:
I wonder will the ship is righted and all will go well or is this going to become yet another health IT disaster being over budget and seriously behind time.


Andrew McIntyre said...

Doing something like this is very difficult when the underlying data quality is not good. The wrong loinc code here and unescaped characters there may not sound like much but it prevents smooth operation and causes a whole host of little fixes or "hacks" to need to be put in place and they are never 100%. Sometimes you just throw you hands up and say this is just junk, its not fixable.

I doubt they have the leverage to insist that everyone produce compliant data, which is the job that HealthConnect/NEHTA/ADHA should have been doing but have neglected.

eHealth, like most complex systems has to be built in layers and ideally those layers don't reach into each other, but when lower layers are not solid lots of access violations occur. This is equivalent to underpinning your foundations during construction because the building keeps sinking somewhere new every day.

Anonymous said...

She’ll be right Andrew, rember it just a flick of a Gantt chart to change the dates and the contract manager has one throat to squeeze, except you can’t reach the throat because they own you and have you face down over a barrel wondering what happen to those experts that were present when you signed up to the magical mystery tour.

Anonymous said...

Andrew correct me if so am wrong, I am leaning towards your viewpoint. To me it seems that the wider use and acceptance of FHIR, CDA, V2 and other standard terminologies, the healthcare sector in Australia and most likely elsewhere is moving towards (constrained due to MyHR) gaining a technical infrastructure for managing the sending of “stuff” back and forth between systems.
However I think many experience this. Simply sending information from one system to another is of limited benefit to clinicians without tools that quickly assimilate incoming information and make it actionable at the point of care.
Blandly possessing the technical means to exchange information using standard formats, including the FHIR standard, devalues those standards and others that support those standards. Clinical decision makers need the ability to receive information, make sense of it, and then view the unique data points that are related to a specific clinical problem. As long as the information is not organised in a usable format, the healthcare sector in Australia has not achieved true clinical interoperability, application interoperability is cure but belongs in the internet domain. Instead, we are being forced down a path resulting in clinicians being flooded with a bunch of “stuff” that’s no more valuable to patient care than a jar of leeches and a bowl of potpourri.
The current cumbersome encounter-by-encounter design thinking seems to be primarily grounded in a thought pattern akin to that used to facilitate billing. However, this design fails the usability test when managing a patient’s health over time or tracking the progression of chronic conditions.
A challenge then to the clinical executive and advisors at ADHA, are you really helping your peers and the people of Australia? Can you make a difference and invoke a change in thinking and direction? Is that your reason for being there?

Andrew McIntyre said...

The first step is you get everyone reliably accepting high quality compliant information and displaying it well. Once that is done people can start sending it. To use that information is the next step, but being able to create it and reliably send it knowing that it will work for basic human display is a vital step.

The current standard we are working on for Referral (and Diagnostics) has atomic summary data but in the Messaging Project applications just have to consume it reliably. To use it can come later. If you can't even send it we will not be able to progress. There will be a pdf display segment that endpoints can display. Displaying that, and not falling over on the atomic data bits, is the only requirement.

Australian Diagnostics and Referral Messaging - Localisation of HL7 Version 2.4

Comments on this are welcome and invited, we are getting close to a public comment period.