HealthConnect Mark II?

On the 21st February 2007 the Access Card Consumer And Privacy Taskforce issued a Discussion Paper Number 2. It covers the area of Voluntary Medical and Emergency Information being place in the citizen controlled area of the Access Card.

The rationale behind the discussion paper is explained in the introduction.

“In his address to the Australian Medical Association (AMA) National Conference on 27 May 2006, the then Minister for Human Services, Hon Joe Hockey MP stated:

“Importantly for the medical profession, there will also be space available for cardholders to voluntarily include vital personal information that could be used in medical emergency such as, next of kin, doctor details, allergies, drug alerts, chronic illnesses, organ donor status and childhood immunisation information. This information may save lives.”

In line with the Minister’s commitments, the Access Card Consumer and Privacy Taskforce has explored issues related to the storage of this personal medical information with the aim of developing a protocol which could be introduced at the same time as the registration process for the access card commences, that is in April 2008.”

It seems to me the discussion paper is typical of the sort of paper one would expect from a well meaning Taskforce which was blissfully ignorant of the issues surrounding the appropriate handling of potentially shareable identifiable clinical information as well as the nature of the requirements of emergency care providers for rapid access to some categories of information.

To address the second issue first – putting on my Emergency Medicine Specialist hat – the answer is easy. I want to know about any clinical history, current treatment or ongoing clinical condition that may significantly impact or change how I treat the patient in the hours before I can obtain such information from the patient’s family or doctors.

Addressing the first issue is a shade more complex and centres around how the information held on the card is to be created, maintained, verified, formatted, displayed and so on.

A sensible approach might be to use a standard template such as the ASTM Continuity of Care Record (CCR) or the HL7 Clinical Care Document (CCD). This would ensure all the relevant information, known to the clinician loading the card for later use, would be captured and that those looking for the information would become used to a standard data presentation and so be able to locate what they needed quickly. (I am unsure just exactly how much space would be required to successfully implement such a format but it is likely 20-30K bytes would be enough for most patient data requirements)

It is possible that if a standard format were used this information could be directly downloaded into the hospital computer system and thus quickly made available to all those involved in the patient’s care.

I agree with the Taskforce that it is vital all clinical information stored on the card be professionally verified and maintained. It seems unlikely practitioners will undertake such information gathering and recording without fee and consideration is required as to how such work is to be remunerated and indeed if the cost of such effort justifies the benefits that may flow. It is my view that before this additional application is added to the Access Card careful community cost benefit analysis should be undertaken.

Another significant issue is the currency of the information held in an Access Card and it will be important to ensure both that the currency of the information is clearly displayed and that appropriate business processes are developed to ensure updates are made as the information changes. Maintenance of the currency of information is an intrinsic problem when information is held on such a device – especially one that may not always be available for update. The now defunct HealthConnect program invested a lot of effort in defining all the approaches required for a central repository of shareable information but the Access Card infrastructure adds another issue in terms of the Card being only occasionally updated and the possibility of important information not being included.

An issue that is also possibly contentious – and will need to be resolved – is an approach to professional certification of the data loaded on the card. If the data read from the card is to be trusted by clinicians it needs to be recorded by the patient’s carer, verified for completeness and accuracy and then stored in a form that cannot be tampered with. Almost certainly some patients will have concerns regarding some information held on the card and there will need to be a very careful design of privacy and security controls to optimise benefit from the card.

All in all, as this paper stands, it is an inadequate review of the issues associated with use of the Access Card as a portable shareable Electronic Record – which is essentially what it is. I believe the paper is rather ‘half-baked’ and needs much more careful policy work and expert Health Informatics and Health Professional input before it should see the light of day as a serious proposal.

As a final comment I must highlight the following paragraph.

“The Taskforce draws attention to the fact that a significant number of submissions have canvassed a greatly expanded role for the access card in terms of linking it with other health records. The Taskforce is aware of the work being undertaken across various agencies to progress a national system of linked electronic health records assisted by the work of the National E-Health Transition Authority (NEHTA). The Australian Government has concluded that the access card program is not related to work being undertaken by NEHTA as this would represent a significant departure from the stated purposes of the access card.”

Just who is in denial of what here? Surely if we are all going to be given an Access Card and a number we don’t need NEHTA giving us another number? Any numbering of citizens I see as an essentially bad thing for a free society, but random non-government entities like NEHTA doing it is ‘over the pail’ in my view. A last point - just why does a company limited by guarantee not have a .com.au domain URL rather than a .gov.au?

David.