Sunday, October 30, 2011

The Personally Controlled EHR (PCEHR). Are There Some Deeper Implications For the Consumer-Clinician Interactions?

The following article appeared a few days ago in the MJA Insight.

Sue Ieraci: Paternalism’s new practitioners

24 October 2011
WESTERN society’s view of doctors has changed substantially in the past few decades. What might previously have been regarded as special expertise and judgement is now seen as arrogance and paternalism.
As more of the general population has access to education about their health, it is only appropriate that orthodox medicine should adapt by providing more information, expressing uncertainty where it exists, and involving the patient in their care decisions. There is no doubt that this happens more than ever — and rightfully so.
Paradoxically, however, as orthodox medicine has become less paternalistic and increasingly based on evidence, more people are turning to practitioners who offer certainty in the guise of choice and empowerment.
At its worst, the outcomes of this “empowerment” can be devastating, as was the case in WA, when a woman was “influenced by misinformation and bad science” and refused orthodox medical treatment. The WA coroner was reported as saying that if the woman had not spent a year seeking the advice of a naturopath rather than seeing a doctor, she may have survived.
Maybe this case is an example of that fact that, while culturally we have turned away from “elitism” and moved towards the concepts of autonomy and choice, something in our humanity still seeks reassurance and certainty.
More here:
The two links cited point here:

Doctors and patients 'in parallel universes'

Hilda Bastian of the Consumers Health Forum claims most doctors don't treat patients as equal partners in medical decision making (Photo credit: British Medical Journal).
Despite the rhetoric of partnership, the reality is that most doctors don't treat patients as equal partners in medical decision making, according to an Australian health consumer advocate.
In this week's special issue of the British Medical Journal focusing on patient partnership, Ms Hilda Bastian, chairwoman of the Australian Consumers' Health Forum says that doctors need to work more equitably and effectively with patients.
"Many doctors retain the paternalistic view that they are the right people to speak and act for the people they care for," Ms Bastian says.
She says doctors often fail to acknowledge patients' own expertise in their condition and needs and feel threatened by those who are well informed. Patients, on the other hand find it difficult or frustrating when doctors appear not to have the information on offer.
Lots more here:
and to a report found here where an obviously intelligent women deferred treatment for her cancer for over a year from diagnosis (going with homeopathy) because she had concerns about the treatment.
See here:
What seems to be at issue in all this is how a patient is to navigate the health system, who they should trust for advice and who should be accountable when things go badly wrong.
In here article Dr Ieraci goes on to talk of the issue that faces a range of ‘holistic’ or ‘fringe’ practitioners who devote a lot of time to engaging the patient, empowering them and then really not providing, within that relationship, an honest assessment that there may be other more mainstream treatment choices. She then goes on to suggest this can be as ‘paternalistic’ as the no-discussion, my way or the highway, physician of old.
A core fear many clinicians have regarding the PCEHR is that having either patients or doctors with potentially only partial information there may be all sorts of unexpected issues arise. The risks to the quality of care this potentially poses are obvious.
My take on all this is that unless the consumer develops a fully trusting relationship with a mainstream and skilled clinician they put themselves at unnecessary risk. There is no doubt that there is much traditional medicine does not have all the answers for, and there is much comfort that can be found in adjunctive treatment but we need to get the basics as well done and as evidence based as we can before moving on to the other approaches.
Used properly it seems to me providing patients with access to the same electronic record the mainstream clinician is using to support their care provision may very well turn out to be a good thing in establishing the trust, openness and confidence between professional and patient we need. (Such models are working well in the US with Kaiser Permanente and are being actively worked on in the UK and elsewhere).
Creating parallel partial systems - as the PCEHR is - is just wrong headed in my view and is, in a way also just paternalistic and confrontational - saying to doctors we are going to set up a parallel system without the least level of prior consultation, discussion or review of other options, is hardly a way to get professional acceptance.
Despite all the denial our health system is actually quite amenable to, and architected for, the ‘tethered’ Personal Health Record  model given the inevitable ‘gatekeeper’ role the Medicare system imposes for access to care of many sorts. It is this sort of approach the Government should be pursing - in co-operation with the profession - not in confrontation with it as it now seems to be.
Personal control of a partial and ill-understood record (on the part of the patient who may or may not understand results reports and the like) may just turn out to be more dangerous than no shared record at all. Of course we have no idea about all that because no one has actually done a serious trial, at any scale, on the actual PCEHR proposal. There seems to be some idea that a whole range of Wave Sites are suddenly going to morph (on July 1, 2012) into a functioning national system! If you be believe that you would believe anything!
Before wrapping up, the issues of paternalism and autonomy are, I believe, best resolved on a one to one basis where the patient chooses how much guidance they want and also understand that with less guidance comes more personal accountability for ultimate outcome. With communication and trust this can work very well and each can have a satisfactory experience and hopefully good clinical outcomes. We all have to navigate relationships we are comfortable with, with lawyers, accountants and other professionals. We need to do the same with our doctors, while recognising that maybe your health is more important and needs more work than the tax return or the legal dispute!

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