The rock stars of brain injury are easy to pick. The fans start gathering at book signings well before the authors turn up, and there's always someone at the World Congress on Brain Injury, staged last week at the Hague in the Netherlands, keen to hear more information about the details of a particular operation. Then, at the cocktail reception and perhaps to rub in just how singularly talented some people can actually be, paediatric rehabilitation physician Peter de Koning picked up his electric guitar until the congress was, quite literally, rocking.
(And, at this point, it's probably important to note that this is not the same Peter de Koning as the one who had the 1995 one-hit wonder, "It's always spring in the eyes of the dental assistant", although this might be a natural mistake to make.)
The point is these are the technical experts; remarkable neurosurgeons with razor sharp skills, imagination and precision. As it should be, their extraordinary ability is applauded, and it's easy to see why these skills are so widely admired.
This is our usual model of medicine and it's best described as the "orthopaedic model". Brilliant surgeons; incredible pressures; working against the clock until finally, success or the tragic failure of a body convulsing into darkness. And this is the image we conjure up when thinking of heart transplants or other operations, because it's terrific to realise that medicine's come so far since the days patients veins were opened to drain away disease. So much has been achieved it's only right to pause for a second to congratulate ourselves on the successes. Brilliant technicians deserve every plaudit. And yet, and yet ...
This was the other message coming from the conference. No matter how skilful the surgeon, no matter how precise the scalpel; it can never be enough.
I'd been attending the 11th biennial meeting, but when you think about it, 22 years isn't actually very long to have spent attempting to grapple with our most complex organ. Although we know so much more about the brain today than we did even a decade ago, there's so much more to learn and this was the critical message from the keynote speech.
Professor Andrew Maas, himself a neurosurgeon who has experienced the huge variations in outcomes from brain injury, spoke urgently against any moment of self-satisfaction. With forensic skill he reviewed hundreds of instances of the supposed "gold standard" in research, the "randomised controlled trial". Penetrating through the self-serving verbiage that's so necessary to achieving academic recognition, he found there was only one recent instance where a statistical correlation had been found and that was that the treatment had actually failed, killing patients who might otherwise have lived.
Maas didn't assert scientific method is useless. He did, however, point out the flaws in the process and emphasise that it doesn't seem to be having the effect of our understanding of this vital organ. The difficulty is that the complexity of the brain means no injury can ever be exactly alike, but the problems don't stop there. We measure what we can; raw numbers provide one of the few robust ways we can generalise and search for patterns that might represent progress. But these figures rapidly degenerate into numbers with limited utility when treatment patterns cannot be replicated exactly, any way.
Two specific factors complicate treatment even further. The first is the different outcomes from brain damage. It would be nice to be able to have a standardised measure that is more precise (or accurate) than the Glasgow Coma Score; a simple number between one and 15. The second is related to outcomes after injury.
By their nature, randomised controlled trials focus on periods of up to two years, and this has been the model. The assumption has been that the capacity for progress will diminish dramatically as time progresses, with the result that we don't bother thinking of intervention in such cases except to stabilise patients. The assumption is that nothing can be done and progress will be minor. This absolves us from working with such patients.
The trouble is that the lives of people with an injury don't conveniently stop at the conclusion of the studies. This period represents the majority of time spent by people with an injury and their supporters: discerning how this can be made more worthwhile is vital for anyone calling themselves researchers. The difficulty, however, is obvious. Wider trials are, by definition, virtually impossible. The researcher is forced to probe individual situations, looking for particular interventions that may (and it's virtually impossible to prove) have had an effect.
Maas identified a critical issue: the structural process of the study (the scientific method) almost inevitably guarantees that particular results (and ones that are, in fact, not especially useful) will be produced and replicated, time after time. It's a shocking accusation. It's made more powerful by the fact that it happens to come from somebody who's proved themselves a master of research.
We should expect Maas to be emphasising how marvellous things are, instead of cutting the current process down. Nevertheless, in doing so the professor may have made a greater contribution to the broader situation of people with a brain injury by allowing them to still be considered patients years after their injury, rather than being locked into a fixed and static framework at this critical period of life.
That this will offer new directions for study is now almost guaranteed. Maas' extraordinary intervention has opened up new ways of thinking about longer-term post-injury outcomes. And exciting work is already being done. A Danish study considered, for example, how highly disabled people can use computer worlds like Second Life to experience and develop strategies for living. There's much, much more research to be done ...
Nicholas Stuart is a Canberra writer.