Thread by @BettinaRyll

If you want to keep patients safe from 'fake news', stop using baby language.

I've been challenged to write down how we actually *do* things in @MPNEurope. Considering that it was me who started it, that's fair enough, I guess. It's also utterly painful. I already knew I'd never make it in one go, so my New Year's resolution was 1 blog a week...

I just finished mpneurope.org/post/16-52-kno…. It's 16/52 so you can see how it goes.....but it got me thinking about knowledge and teaching again and *the* most important thing in it all: stop using baby language with patients.

There are even publications out there how much cancer patients retain after an- increasingly short- visit with their oncologist. The short of it: not much.

The cheap way out would be obviously to now just blame it on the oncologist. But really, just think about it- did any of us learn French verbs by being them told in a short stint once? Even without being told just prior that cancer was going to kill us or the person we love?

Medical information is new and complex for most people. And even if you are a medic yourself, if you've just been given devastating news, your brain is not in the space to learn (I have experienced that one myself).

The point is this: even with the best of intent, you will not pick up complex information in a situation of shock, especially when time is short. So the *only* thing one can do is to make sure that people- once they recover somewhat- can *learn by themselves*

What do we do today find new information? We google. Don't be naive telling your patient 'don't google'. They will use another search engine. Or just not tell you. And we all know that what you find...is dependent on how well you search.

There is a lot of bad rep about medical terminology. What it tends to miss are its advantages. It is Latin-based (if it isn't, it's Greek). That might be wildly outlandish but it means that medics usually understand diagnoses even without speaking each other's languages.

And it has this neat feature which is the uniqueness of terms. A thing means one thing and one thing *alone*. What now happens when well-meaning people try to make 'complicated' medical information accessible to lay patients? They put it into common language

The thing about common language? It's not standardised, it's not unique and that makes it vague at best. And what happens next? Patients put that into google 😱😱😱😱😱😱😱

There are actually 2 issues with this: 1. because it's vague, people find contradictory and misleading information and 2. for that reason, no trustworthy source will use the expression.....

For example and as you know I'm in #Melanoma, one of my pet peeves: 'skin cancer'. Google 'skin cancer' and ....you find....a heap of different things. Basically along the lines of 'it's very frequent' and 'people die young'.

Skin cancer being a non-descriptive group of very different entities and the lack of attention to detail- Stage1 Melanoma has a very different prognosis from Stage 4 Melanoma, let alone Basalioma- creates *a lot of* anxiety

So the *one* thing that would really make a difference? That would be stopping to use baby-language with patients. Tell them their *exact* diagnosis- the medical one, not the alternative therapies-I love your money ones, and to tell them to search for that

It might seem counter-intuitive but the thing that we found to keep patients safe from fake hopes and fake news was truly understanding their situation and their options- and they *will* google, so better make sure they have a chance to google right.

You don't believe me? Wipe the cookies of your browser and any spy ware you might be aware of and google....that's what patients without the proper medical terms will see.

So the one thing we can all do? That's making sure patients find the information that is relevant for them. (That's for a start). Well-meaning, but inaccurate baby-language actually causes more harm than good