[LINK] Your Medicare records online

[Stephen Wilson]

Stilgherrian wrote:
> Is anyone involved in this discussion about what medical records are or are not needed in emergencies a doctor, nurse, paramedic or hospital administrator
I am not a medico but I have worked in the health system for over 20 
years, in clinical studies, hospitals, medical device R&D, and e-health.

I observe that a lot of the debate on the Link list is treading old 
ground. Nothing wrong with that. Just be aware that there is heaps and 
heaps and heaps of considered literature on all aspects of electronic 
health records, usability, pros and cons, privacy, architecture etc.

The claimed benefits of EHRs (such as the system proposed by NEHTA 
before COAG) are many and varied, and it is true that many of the claims 
are overstated. It's also true that there are few robust studies so far 
of the impact on clinical outcomes of going electronic.

Regarding Stil's observation that "Evidence is not the plural of 
anecdote", unfortunately many of the claimed benefits do seem to erupt 
politician's personal experience of the health system. One past health 
minister made a big deal about how his medical history was taken time 
after time as he stayed in hispital. It's commonly said that an EHR 
available at the hospital bedside will mean medicos won't have to 'waste 
time' taking histories. But that's nonsense. Histories are taken because 
...
- the way a patient recounts their condition is itself diagnostic
- different medicos have different interests, and look through different 
prisms
- an EHR that held everything of interest to all would probably be 
unreadable
- in public hospitals, medical students take histories as part of their 
training
- it is good bedside manner to take an interest rather than stare at a 
screen ...

and so on.

Regarding the availability of emergency information online, as many have 
observed, what matters in an emergency is usually pretty concise and is 
better conveyed in a non-volatile card or bracelet.

Incidentally, Alan Fels' consumer & privacy working group in the Joe 
Hockey Access Card project released a really very good analysis of what 
medical data should go on to a card. I commend the paper, as one of the 
few worthy outcomes of that effort.

I think one of the few claimed benefits of EHRs that is not 
controversial is the potential to improve public health outcomes and to 
support better population-wide health resource planning. With proper 
privacy in place, it will be very valuable to have an eye-in-the-sky 
view of disease trends, demographic correlations, long term medical 
device and drug performance, etc.

With some privacy and professional medical colleagues, I wrote an 
academic paper about privacy, security and opt-out healthcare records a 
few years ago:

"Patient Privacy and Security – Not a zero sum game!" Wilson, Connolly & 
Denney-Wilson, Journal of the Australian Epidemiology Association V12.1, 
2005

Abstract

All too often in the debate over electronic health records, the 
interests of the individual and of the broader community are thought to 
be at odds. The patient’s fundamental right to privacy is generally 
assumed to be best served by an opt-in rule requiring their explicit 
up-front consent to participate. Yet the benefits to population health 
and medical research of a comprehensive record depend on the 
completeness of the data and a freedom from bias, both of which may be 
compromised unless the vast majority do in fact opt-in. Is this tension 
between individual and community unavoidable? The answer may lie in new 
security technologies such as smartcards, which can help de-identify 
event summaries written into the record, while preserving the patient’s 
explicit control over the process. If fundamental privacy protections 
can be built into the architecture of electronic health record systems 
and health identifiers, then the de facto rule might be safely changed 
from opt-in to opt-out, with significant improvements in participation 
rates and consequentially the usefulness of population health data.
http://lockstep.com.au/library/privacy/patient_privacy_and_security_



Cheers,

Steve Wilson
Lockstep.