Late last week we had the release of the draft legislation for the National Health Identifier Service.
I have provided the links here to the documentation.
http://aushealthit.blogspot.com/2009/12/e-health-news-from-doha-new-draft.html
First of let me say that if what is proposed actually provides a robust, reliable and trustworthy, privacy protective identifier to permit the correct linkage of the various information components that may make up a lifelong patient electronic record and provide clinicians and consumers with certainty as to the provenance and ownership of the health documentation they are authorised appropriately to access, and essentially nothing else, then that outcome is almost certainly a very good thing.
Indeed right at the beginning the proposed legislation says (as its objective):
“3. Purpose of this Act
(1) The purpose of this Act is to provide a way of ensuring that a person who provides or receives healthcare is correctly matched to health information that is created when healthcare is provided.
(2) This purpose is to be achieved by assigning a unique identifying number to each healthcare provider and healthcare recipient.
The essence is that all this is to ensure ‘correct’ matching of records by allocation of a unique identification number.”
This, of course, brings us to the first set of issues.
First where is the practical evidence that the approach being adopted will work ‘correctly’? I assume by the use of the word correct we are talking of vanishingly small error levels.
Well, we all know the Medicare Australia databases have measurable error rates and we also know there are more Medicare Numbers out there than there are people entitled to have them so how can we know the system will be essentially error free?
My view is that we can’t. Without a large scale pilot of say 500,000 people we are only guessing. How many mismatched records does it take to cause a problem? I don’t know but it is not many.
Second to conduct a pilot of this scale all the systems that may need to embed the identifier will need to be modified, tested and operational so exchange accuracy can be confirmed. It’s a bit late to discover we have used a ‘trusted’ data source which turns out not to be quite trustworthy enough after the event!
Put bluntly this is a potentially expensive leap of faith that may turn out to not be quite ‘good enough’.
In the COAG explanatory document we have the following (Building the Foundations – Page 7):
“A Healthcare Identifiers Service (HI Service) is being designed and developed by the National E-Health Transition Authority (NEHTA) on behalf of all governments.
The HI Service will provide a national capability to consistently identify individuals and healthcare providers to facilitate reliable healthcare-related communication.
In 2007, NEHTA contracted Medicare Australia to scope, design, build and test the HI Service. The design of the HI Service draws on existing elements of Medicare Australia infrastructure including trusted personal information about individuals, consumer Medicare cards, information policies, and customer services such as shop front and online services. For these reasons it is proposed that Medicare Australia will be the initial operator for the HI Service for the first two years of operation.”
I can’t find a single word that suggests a feasibility study has proven all this will actually work as intended. It seems just to be assumed.
The planned time lines are explained in this article
NEHTA to test health ID this year
02 October 2009 04:54 PM
The National E-Health and Transition Authority (NEHTA) has today released its strategy for 2009 to 2012, listing priorities and timelines to enable e-health, including developing an "office" model for health identifiers by December.
The strategy was formed considering the National E-Health Strategy written by Deloitte last year and the recent National Health and Hospital Reform Commission recommendations. NEHTA admitted that there had been a gap between what stakeholders expected of it and where the authority was heading. "As the organisation evolves it is important to ensure a foundation exists for 'what' the organisation has been put in place to deliver," it said.
There are four parts to the strategy: "urgently" developing the foundations to enable e-health, coordinating the progress of priority e-health solutions and progresses, accelerating adoption, and leading the progression of e-health in Australia.
The strategy will see an "office model" for the healthcare identifiers released by December this year. An early adopters release will follow in April 2010, followed by a later adopters release in July 2010.
NEHTA CEO said earlier this year that legislation to enable the use of individual health identifiers was unlikely to be passed until next year.
Lots more here
http://www.zdnet.com.au/news/software/soa/NEHTA-to-test-health-ID-this-year/0,130061733,339298878,00.htm
I don’t see any large scale validation or software modification phases – I wonder why?
This must also be a worry
08 December 2009 03:43 PM
The Council of Australian Governments yesterday confirmed the goal of introducing individual healthcare identifiers within the next year and vowed to put draft legislation on the table for consultation.
.....
However, the overall framework for e-health records remains unfunded. NEHTA's business case for the combination of the health identifiers into personally owned individual electronic health records was again not considered by COAG. NEHTA has been trying to get its business case considered since October last year.
Estimates say that the spend needs to be between $1.2 billion to $1.9 million to create a functioning e-health system.
More here:
http://www.zdnet.com.au/news/software/soa/COAG-commits-to-health-IDs-in-2010/0,130061733,339299911,00.htm
We might be creating all this and the big picture does not get proceeded with!
See here:
http://aushealthit.blogspot.com/2009/12/coalition-for-e-health-wrote-to-prime.html
The comments by experts reported here are also very interesting:
10-Dec-2009
By Sarah Colyer
BASIC privacy rules for Australia’s future e-health system have been laid out in draft legislation, but privacy experts are worried the Bill is too narrow in scope.
.....
Australian Doctor understands the identifiers are technically ready, and could come into use as soon as the Bill is passed.
But David Vaile, executive director of the University of NSW’s Cyberspace Law and Policy Centre, said the Bill was “contextless” and a “complete governance failure”.
“It’s almost as if they have deliberately tried to make the Bill impossible to comment on, because you can’t see the system it is a part of,” he told Australian Doctor.
The Bill did not answer whether the identifier could be used for financial monitoring, research or auditing, he said -– “things way beyond clinical care”.
He was also concerned that the legislation left some complaints to be dealt with in the Privacy Act, “which is encyclopaedic”.
Dr Juanita Fernando, chair of the health sub-committee of the Australian Privacy Foundation, raised concern that the Bill does not address incidental breaches of privacy; for instance, when doctors fail to log out of the e-health record properly.
More here (registration required):
http://www.australiandoctor.com.au/articles/3d/0c06633d.asp
The National Partnership for e-Health certainly is not reflective is quality governance in my view. See here:
http://www.coag.gov.au/coag_meeting_outcomes/2009-12-07/docs/npa_e-health.pdf
Lastly for interesting takes on the matter we have this:
Govt wants to establish e-health system
December 11, 2009 - 12:09AM
AAP
Every Australian should be assigned their own electronic health record number by the middle of next year, with the federal government releasing the draft legislation establishing the system.
Introducing personal e-health records will slash $627 million off the health budget every year, according to the Australian Institute of Health and Welfare.
Federal Health Minister Nicola Roxon says a national e-health system will allow health providers to share patient records and improve care.
"Mismatching of patient information has been an acknowledged problem in the health system," she said in a statement on Thursday.
More here:
http://news.smh.com.au/breaking-news-national/govt-wants-to-establish-ehealth-system-20091211-kmi2.html
One can only be glad that someone knows exactly how much personal records will save. I am sure the AIHW would be surprised at the apparent precision of the estimate!
Note this link provides a very useful summary of what is planned:
http://www.health.gov.au/internet/ministers/publishing.nsf/Content/mr-yr09-nr-nr230.htm
Even if the HI Service does deliver something that is fit for purpose, scales as needed and so on there are still some major issues to be sorted I believe.
These seem to me to fall into the categories of Implementation and Cost Issues.
Among the implementation issues are things like:
1. Addressing the education of public and providers as to what all this is about, what it means and so on.
2. Addressing the present lack of clarity as to who does what in the maintenance and updating of the HI Service. With 20+ million souls enrolled and 300,000 new ones a year being added this is a major task.
3. The issuance of the NASH provided smartcards for provider identification to the 600,000 or so health providers. (The cost in materials and effort of this will be non-trivial).
4. The lack or a ‘real’ implementation plan – 22 million people are not going to be using this service come July 1, 2010 take it from me!
Cost issues also exist I think.
1. NEHTA has a total of $218M to spend on this and all its other operations until June 2012 (from July 2009). Given NEHTA’s base running costs are about $35M p.a. (excluding consultants) that does not leave all that much to get all this going and then operate!
2. Who will pay the software developers to modify their systems to suit these identifiers or is it just something they have to do.
3. How is the work done in practices around the country for initial and confirmatory look ups of HI’s the be compensated?
I am sure there are all sorts of other issues – like just how likely is the legislation when passed going to suit what has been built – and guess what I now see the whole student sector is about to get an identifier to – approved at the last COAG!. We are all going to be numbered to death!
I will leave it to the lawyers and privacy experts to assure us all this is all OK but I have a feeling – from Prof. David Vailes comments – which I agree with on my reading – there are some problems here also.
I am not at all comfortable with the use of identifiers for such areas as research, management and disease surveillance without some actual consent from the patient involved. As for the old ‘and whatever the law requires’ should just not be there.
I also wonder how making provider details available without specific consent (say as is done in Skype) might not be a better idea.
I really don’t have a good feeling about all this. Too secretive, too un-consultative and too unproven are my takes for openers.
David.
By Sarah Colyer