Editorial Note: This is the third in a RxISK Map series of posts – See Reformation Day and Here We Stand. These link closely to the RxISK Prize. There are two aspects to finding a cure for an adverse event. One is understanding the biology. The other is getting it established that the effect happens. The Prize aims at the biology. The RxISK Map, now live, aims at establishing what is happening.
Over the last few weeks as this series of posts has taken shape there has been a lot of back and forth on the best way to frame the material, which is central to what RxISK is about.
From the start, some of us have worried that RxISK was too focused on harms. That it would scare not just doctors away but also patients. Could there not be more good news stories, more positive vibes. Perhaps a focus on safety rather than harms.
On the other side has been a sense there needs to be something RxISK stands for beyond goodwill and positive vibes. Harms crop up again and again as the key issue no one wants to talk about.
But nobody moves forward on a negative.
Behind all the harms, there are two guiding stars RxISK has tried to follow. One is that you are the expert on what is happening to you when it comes to the effects of a drug you have taken.
The other is that the best medicine is Relationship Based – See Raiders of the Lost Drug Wreck.
Harms seem to bring a violent underside to healthcare into the frame. Lots of us feel our doctors won’t welcome hearing about harms. Nurses, pharmacists, clinical psychologists also offer hair-raising accounts of being bawled at by doctors for raising something to do with harms.
Doctors as well have their own stories of being dressed down by bosses if they talk about harms. They feel they might be at risk of losing their jobs if they raise harms.
There probably is something to all this. The climate of healthcare is getting more toxic. But there is probably a reverse golf element too.
For anyone like me who has occasionally swung a golf club, getting one good contact in a round is the high that might bring me back for more. I forget the other 99 (if I’m lucky). Just the opposite seems to be at work in healthcare. Most of the people in the system are decent and willing to listen but news of one idiot manager sacking someone for doing their job chills everything.
But there is no process that can’t be turned against itself.
Doctors, nurses, clinical psychologists and pharmacists need to get clever. Our services are committed to being patient centered. Waving a RxISK report in a manager’s face, with its embedded algorithms, evidence of the economic costs at stake, and other elements, is visible evidence we are doing our job. It should be ammunition in any shoot-out.
I don’t ask for your understanding just for your recognition of me in you and the enemy time in us all. Lines from Tennessee Williams Cat on a Hot tin Roof.
In healthcare, the volume of paperwork has been growing to such an extent that even someone committed to accepting and managing harms might find it difficult to find the time to do any additional paperwork.
When we began. the idea was to get doctors or others to fill a full RxISK report – this takes at least 10 minutes. It was a non-starter. We now have this trimmed down so your pharmacist or doctor, clinical psychologist or nurse has very little to do.
Pretty well everyone linked to RxISK gets contacted regularly asking whether we know anyone in the caller’s area (New York, Melbourne, London) who is sensitive to the side effects of medication. We never do. The problem is while we all know great colleagues, predicting what these professionals might do faced with an adverse event, be they doctors, psychologists, nurses or pharmacists, is difficult.
The only way to get it right is to build a Map or a List of professionals in each area who…. who what?
At one point the thinking was to have a Map of Professionals who Listen. But unless listening means being willing to fill an adverse event form, apparent listening might be just a good set of social skills. And it’s a bit twentieth century.
A better bet seems to be a Map of Professionals committed to a Relationship Based Medicine. This means being aware that all medicines are poisons and the best results are likely to happen when both the prescriber and taker are aware of that and the relationship allows the taker to sketch out what the effects of poisoning have been. Non-prescribers can play a part here in helping this conversation to happen.
Relationship Based Medicine means that the relationship is good enough that I can raise a harm and I count enough for the prescriber or someone in healthcare to file a report on what I tell them. Lots of people are practising it as is. The rest of us need to know how to find them.
Like any nurturing relationship it’s about our zones of proximal development where each party holds open a door so the other can become aware of new things and integrate them.
The importance of filing a report with names on them is they transform what I say from hearsay into fact. If enough combinations of people with a problem and professionals, who can check through their history for other factors and question them about possible explanations, link a treatment to an event, this will be impossible for regulators and companies and medicine to ignore.
We encourage everyone filling in adverse event reports to tick the box which allows us to forward their report to their regulator and/or FDA. What will be new for FDA and the medical establishment will be patient data backed up by professional reports.
This is something for a professional to have “fun” with.
We’re in a dark era for professionalism. Managers seem to think everything will be fine if professionals just keep to the Guidelines. And they have no difficulty with the idea of playing professional groups off against each other to get the cheapest prescribers who will keep to guidelines.
In the near future we will have robots who can learn. With a little leeway in terms of killing and disabling a few patients to begin with, these robots will almost certainly keep more patients alive than most medics. The first thing the robot will learn is to pay no heed to guidelines, and the second will be to assume that for the most part what patients say about the effects of treatment is likely correct.
The only livelihoods left in prescribing will be for those of us who can outdo a robot and the only way to do this will be by being able to pick up nuances and non-verbals the robot can’t reach.
There is another reason to tune in to the unwanted effects of treatment. At present most professionals struggle under the burden of hundreds of patients. This could so easily be transformed into the support of hundreds of researchers. Motivation is worth at least as much as expertise. Harness this and going to work could be fun rather than a worry.
Treatment induced death and disability is now the greatest source of death and disability on the planet.
We have a right to have our healthcare professionals take stock of this situation and prevent us being added to a list of the maimed and dead. We can help by bringing them reports of the disabilities treatment seems to have caused, enabling them to intervene at the earliest possible opportunity. If they don’t play ball we need to work around them by finding someone who will – another doctor, pharmacist, psychologist or nurse.
From 1800 to 1900, doctors were a revolutionary class even manning barricades.
Bringing a report is not asking anyone to man a barricade but it is a revolution aimed at restoring decency.
And it’s a form of globalization that allows people everywhere to work together.