[LINK] Open source health records

stephen at melbpc.org.au stephen at melbpc.org.au
Tue Apr 28 20:35:35 AEST 2009

Interesting Bernard, Stephen, Roger, Marganhita, Jan etc ..

Perhaps of interest, the NSW Dep of Health has run an EHR trial since
2006, (with 28,000 participants & 41 deployments) which, according to
an evaluation, has been very successful(?) If so(?) bring it on, imho.


and their Sep 2008 evaluation ..

What is Healthelink?

Healthelink is a new electronic health record system.

It is designed to collect people's health information from existing 
systems and hold it in a central place where health care providers and 
the individual can easily and quickly access it.

The Healthelink program is currently being run as a pilot. This means 
that it only operates in certain areas and for certain people.

Only a selected number of health care facilities are involved in the 
pilot. For a list of the hospitals, community health centres and general 
practices that are participating, please visit our website at 

The benefits

The electronic health record allows individuals and their health care 
providers to access the same information from the same place, no matter 
where the information was generated from.

Timely access to information helps health care providers make better 
decisions about their patients.

The electronic health record is updated regularly and is easily 
accessible via the Web. This means that health care providers can access 
information quickly, when it's needed.

The electronic health record closes the gap between the public and 
private health sectors by allowing health care providers to easily share 
health information.

Individuals can view information about their own health and care through 
the Web. This will help individuals better understand their own health 

Health care providers will have a dependable source of information. This 
will take the burden off the individual to remember all the details of 
their medical history.

Individuals can allow important people in their life to access their 
electronic health record. 

Information held in Healthelink
Healthelink contains a summary of information that is normally collected 
by health care providers. It is not intended to replace other hospital or 
community systems and it does not replicate all the information held in 
these systems.

The information held in Healthelink includes important details like 
diagnoses (medical problems), medications, blood test results, x-ray 
reports and allergies.

When an electronic health record is created for an individual it starts 
out blank. Information will accumulate over time as the individual 
receives care from participating facilities.

Individual participation
The Healthelink electronic health record pilot is open to individuals who 
are aged 15 years and younger or 65 years and older and who live in 
selected postcodes around Maitland and parts of greater western Sydney.

The eligible postcodes in greater western Sydney are 2142, 2145, 2146, 
2147, 2148, 2150, 2153, 2747, 2750 and 2770.

The eligible postcodes in the Maitland area are 2320, 2321, 2322, 2323 
and 2324.

Taking part
The decision to remain in the Healthelink program is up to the individual.

To give individual's time to decide, there is a 30 day cooling off period 
before their record is made available to health care providers.

If the individual does nothing, their record will be available for their 
health care providers to view, after 30 days.

Individuals can withdraw from Healthelink at any time by contacting the 
Healthelink Service Centre. Once an individual has withdrawn from 
Healthelink no additional information will be added to their record and 
it will not be available to view by any health care provider.

Health care provider participation
There are different kinds of health care providers involved in the pilot 
including family doctors (GPs), public hospital doctors and nurses, and 
community health professionals.

Only selected health care providers can view an individual's electronic 
health record. Every health care provider who is given access to 
Healthelink must sign an agreement to respect the privacy of individuals 
and to maintain the confidentiality of their information.

Individuals are entitled to know who has accessed their record. They can 
find this out by calling the Healthelink Service Centre or by gaining 
access to their electronic health record online.

NSW Health understands that the privacy of health information is 
important. For this reason, there are strict access procedures in place 
so that only authorised health care providers are able to view 
Healthelink records. Every health care provider who is given access to 
Healthelink must sign an agreement to respect the privacy of individuals 
and maintain the confidentiality of their information.

And we have made the system as secure as possible to prevent unauthorised 
access to the system. With this in mind, the system undergoes yearly 
audits by independent specialists to make sure the system is secure from 
unwanted intrusion.

Further Information
Visit our website for detailed information about the Healthelink pilot at 
www.healthelink.nsw.gov.au or call our Service Centre on 1800 75 22 66.

Further Information
Healthelink  http://www.healthelink.nsw.gov.au/
Healthelink Electronic Health Record Pilot Evaluation - Summary Report  

Also the "Australian College of Health Informatics - Australia's peak 
health informatics professional body" has a conference in London in June:

The sixth annual conference of the International Council on Medical & 
Care Compunetics – ICMCC.

Dealing with medical and care compunetics, the field of social, societal 
and ethical implications of computing and networking, ICMCC decided to 
focus the 2009 Event on Patient 2.0 Empowerment, more specific on 
Electronic Health Records (EHR) and secondarily, the connection between 
EHR and Digital Homecare.

In a recently published paper, we defined Patient 2.0 Empowerment as:

The active participation of the citizen in his or her health and care 
pathway with the interactive use of Information and Communication 


> Stephen Wilson wrote:
> > But if we're interested in analysing the 
> > privacy of EHRs, then I think we first need to establish a model EHR, 
> > and agree on a set of functions that we want to make happen.
> When you look at a model EHR, that's when things start to get really 
> messy. It sounds like a good idea, but thinking it through raises all 
> sorts of issues - here's a few.
> Suppose I have had a set of tests such as x-rays, MRI, fMRI, blood 
> etc. These can go on my EHR, but are they still valid/current? I will 
> have two sorts of hip X-rays - those before my hip replacement, and 
> those after. Even with those after my hip replacement there are two 
> sorts, those before an avulsion and those after.
> Suppose there has been a mistake in putting the tests on my EHR, how do 
> I get the mistake corrected? Tests are usually interpreted, suppose 
> there is a mistake or disagreement amongst "experts"?
> Will the EHR contain doctors notes and their opinions? All? Some?
> Who owns the information on my EHR? Suppose the tests have been paid 
> by an insurance company - do those tests go on my EHR? Can the 
> company see my full EHR?
> Who owns the EHR of a minor? Mother? Father? Suppose there is a divorce 
> - who owns (or keeps) the EHR? Can step parents see the EHR of children 
> of their partner? Who owns the EHR of someone over 16 but not yet 18?
> What's the situation regarding husband and wife? Can the situation 
> reflect religious preferences?
> What happens if I go overseas? Can I take the EHR with me? Can I add to 
> it from overseas?
> Can I ask for information to be removed from my EHR? Suppose I have had 
> an "embarrassing" (whatever that might mean - who says what 
> is?) condition. Can I request that details of the condition be removed? 
> Restricted?
> What's the situation of military personnel? There may be ancillary 
> information that could be deemed to be of military importance such as 
> where someone was tested and by whom.
> And of course the big one - who can see the EHR? Can some of it be 
> restricted? Under what conditions can the restrictions be relaxed? 
> Emergency? Incapacity?
> That's just a few that I can think of off my head. The health industry 
> (or in reality, it's the illness industry) is the most complex I know 
> of. Not surprisingly the information aspect is also complex. It is 
> easier to muddle through than try and impose structure and process on 
> it. Automation does not like exceptions - the health system is full of 
> exceptions, so much so that the benefits of Information Systems are 
> drastically eroded.
> Just my $0.05
> -- 
> Regards
> brd
> Bernard Robertson-Dunn
> Canberra Australia
> brd at iimetro.com.au
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> Link at mailman.anu.edu.au
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