Tuesday, March 30, 2010
A Serial Commenter Who Has Something Important to Say I Believe.
I have seen the following comment, or similar – from someone identified as Louisa – in a couple of comments on various articles relating to e-Health recently .
"I think it's very important with any e-health system that it be completely voluntary, and that the patients have complete control over who can see what specific information. When you consider some of the more sensitive information people can have in their medical records, such as:
* incontinence problems;
* sexual dysfunction;
* sexually transmitted diseases;
* sex-change operations;
* plastic surgery;
* therapy notes for mental illness;
* trauma counselling notes after rape or child molestation;
* ambiguous genitalia;
* stigmatised conditions such as HIV or weight-related issues e.g. diabetes;
It's very important that patients can feel like they can trust their doctor enough to confide in them in the first place. They need to be able to tell one doctor about their problem and have that information restricted to just that doctor, and not have it be available to other specialists in completely unrelated fields.
I would hope that any e-health system will be completely opt-out (or preferably opt-in), and will allow patients the ability to completely lock down certain information, so that it can't be accessed by anyone other than nominated doctors, even in emergency situations. Failure to allow this could lead to people simply not confiding in their doctor in the first place, which obviously could negate any of the health benefits provided by an e-health system.”
There are few others I would add including basically any recorded mental illness, childhood behavioural problems, Hepatitis B & C, a previous abortion and so the list goes on.
If you consider the proportion of the public who have some health information they want to make sure remains under their control you wind up with – over people’s lifetimes – a pretty large slab of the population (doesn’t some form of mental illness strike 30+% of us at some time in our lives?).
There seems to be a cynicism among some so-called ‘experts’ that this concern does not matter – but I would argue that if these issues are not comprehensively and credibly addressed e-Health will just go nowhere. The claims that it is ‘too hard’ or ‘too complicated’ or ‘too expensive’ to implement will see all sorts of initiatives just quietly fail to be adopted and used.
The complexity of a part of this – the demands by workers compensation insurers to access total rather than relevant parts of medical records - is just the tip of an murky and complex iceberg.
See this program from the ABC Law Report this morning (Tues 30 March, 2010).
Meet Sara (not her real name). She's seeking compensation for injuries sustained in a road accident. The insurer wants access to all her medical records, including those relating to an unconnected sexual assault.
Sara says let the doctors decide what's relevant to her compensation claim and keep irrelevant and intensely private material out of the hands of the insurers.
Her case raises fundamental issues about how we regulate our privacy rights and deal with complaints.
The link is here:
I know the e-Health evangelists find all this frustrating but the lesson is clear as far as I am concerned. Do it properly or not at all!
Posted by Dr David G More MB PhD at Tuesday, March 30, 2010