Friday, 1 May 2015
We are not that stupid! The difference between lay language and inaccurate data representation.
Today, I read this really unhelpful publication entitled
which without getting into the details of the disease- yet another time- promotes some major and recurrent misconceptions about patients.
1. 'Lay language means inaccurate'.
Just because you are not allowed to use jargon or abbreviations does not give you permission to cheat or misrepresent data to your own advantage. That's called 'scientific fraud', not 'lay language'.
2. 'Patients are inherently stupid'.
Diseases hit a crosscut of society and no, you do not loose your brain nor your education when being diagnosed with a serious condition. Plus, some patients spend considerable amounts of time educating themselves so believing that patients 'just don't get it' is- naive.
3. 'Patients don't get risk'.
The diagnosis with a serious condition, especially a life-threatening cancer, changes your perspective on everything- including on what is truly risky in life. Similarly to not having a clue what it's like to have kids before having your own first one. The comparison also holds true for the advice you gave as a childless person to your friends with kids- useless at best, more likely dead-embarrassing. But you'll only know once you get to the other side….
4. The link between evidence and time.
Patients often need to take decisions at a single point in time, so cannot simply sit around for some elusive evidence to accumulate. Because, if you e.g. have Melanoma you'll be dead by the time most healthy individuals are pleased with the available level of evidence. That's then called 'dying in safety'.
So lay language has nothing but absolutely nothing to do with the misrepresentation of data!!!