The jostling for power is probably one of the most fascinating things being played out in the world of health. Science, technology, anecdotes have collided in a most interesting manner- and if you throw in the usual hierarchy of healthcare, the cocktail is complete/
There are the academics- for whom their science is rigid, the randomised controlled trials being the one and only barometer of success; there are the super centre specialists for whom the bubble only extends to their own centres, their own selected patients, there are the decision makers who hop between being "totally supportive" to "not really" for evidence based material- based on the cost involved; there are the healthcare professionals who would like to have their bit funded the most- above all- as obviously their own speciality or profession is THE most important above all....and finally, there are those who live with X, Y and Z.
Lets face it...very rarely do the policy makers or indeed academics who create the studies stand up and face the patients face to face. Rarely are decisions to fund- or not- made with a patient in the room- ensconced securely begins a layer of bureaucracy, decisions are not that tough to make. Public engagement events to explain why X, Y or Z can't be funded? Rare as hens teeth. Mostly due to lack f cojones to be honest.
In the midst of that all, the landscape is slowly changing- and its fascinating to see it develop. Maybe its a generational thing but folks are starting to question "Why" a bit more. Reasons such as "I am a Professor and I said so" doesn't wash much- and quite rightly too. People are starting to make their own innovations, their own adjustments to their lives and asking the profession and system to fall in line. Its a bit like any disruption...started with a few rabble-rousers- ignored conveniently by the system...but as their numbers and voice have grown, the system is being forced to listen. Whether it be a policymaker, healthcare professional or industry, there certainly is a subtle change in the air.
The trillion dollar question is as a healthcare professional where does our role sit...is it to resist, deny those who live with a condition what they feel they need using the shields of evidence or do we encourage disruption? Or do we help them to change the paradigm of the system? My experience in 2 years of doing this is that evidence is an interesting term- used differently by different people- to justify the reasoning for inclusion or exclusion- based on their personal prejudice or politics.
Personally. I am all for change...mostly because the rigid way if "we know best" ain't seem to be working that well per se. We deny folks a technology, they find a way around it; we restrict them to diet X or diet Y, they find out what works for them and use it- more to the point, they then cascade that info to others- whether we like it or not. My fundamental role is to pass on information, ensure safety is maintained and at the end of it all, id the individual uses something that works, surely that's exactly why we do this job? So I am all in favour of guiding such individuals, encourage their own innovation...why indeed not? If it works, why indeed not.
I suspect at the end - it does boil down to power- how much one is prepared to "give up"- or whether you see this as a power thing at all. The power thing has always bemused me- and in spite of what impression social media may give you, Consultants have, still, a lot of power in the system. The question is whether we use it to facilitate what patients need - or to maintain the status quo of hierarchy. My personal experience and tip after 10 years? Use it the right way...the rewards are far more. Using it to obstruct patients or what they need because of what a trial- not applicable in real life- showed is silly. Or simply just delaying the inevitable.
In any business, consumers drive products....health is just about starting to wake up to it...times are changing...the power base is indeed...shifting.
And may it continue to gather force and pace. Amen.