The misrepresentation of evidence

About a week ago I was involved in a heated twitter debate about this blog post. I felt, as I said on twitter and in my extensive comments about the blog, that it entirely misrepresented the evidence about Adverse Childhood Experiences by implying that because of risk multipliers within particular population groups, certain negative outcomes were almost inevitable for people with multiple ACEs. The author repeatedly asks rhetorical questions like “If 1 in 5 British adults said they were abused in childhood in the last CSEW (2017), why hasn’t our population literally collapsed under the weight of suicides, chronic illness, criminality and serious mental health issues?” Likewise, she asks how anyone can be successful after childhood abuse if the ACEs research is correct. I replied to explain that this simply isn’t what the data tells us or what risk multipliers mean, so the exceptions are expected rather than proof the finding is incorrect. For example the claim that a 1222% increase in the risk of suicide amongst people with 4 or more ACEs meant these people were doomed, in reality means that the odds increase from 1 in 10,000 to 1 in 92, meaning that 91 of every 92 people with 4+ ACEs do not die by suicide.

ACEs are a very useful population screening tool, and have provided incontrovertible evidence of the links between traumatic experiences in childhood and numerous social, psychological and medical outcomes that has been highly informative for those of us designing and delivering services. To me it seems like an example of how a simple piece of research can have a massive impact in the world that benefits hundreds of thousands of people. Yet that blog repeatedly implies ACEs are a harmful methodology that “targets” individuals and to is used to “pathologise and label children, arguing that those kids with the high ACE scores are destined for doom, drugs, prison, illness and early death”. It has been my experience that ACEs are used not to pathologise individuals, but to to highlight increased vulnerability, and to identify where there might be additional need for support. For example, I have used this data to argue for better mental health services for Looked After Children.

I felt that the repeated misrepresentation of the maths involved in interpreting risk multipliers undermined the entire message of the blog, to which I was otherwise sympathetic. (For the record, it is entirely appropriate to highlight bad practice in which it seems certain professionals are applying ACE scores to individuals inappropriately, and making people feel that their life chances are restricted or their parenting under scrutiny because of their childhood experiences of trauma). But unfortunately the author took my polite, professional rebuttal of elements of her blog as a personal attack on her – to the extent that she misgendered and blocked me on twitter, and refused to publish my response to her comments about my reply to her on the blog. That’s a shame, as the whole scientific method rests on us publishing our findings and observations, and then learning from the respectful challenge of our ideas by others with knowledge of the topic. But I guess we are all prone to defending opinions that fit with our personal experience, even if they don’t fit with the evidence.

Thinking about how uncomfortable it felt to see someone I considered to be a peer whose expertise I respected misrepresenting the evidence and being unwilling to correct their misconceptions when challenged, but instead trying to discredit or silence those making the challenge, it struck me that this was an example that highlighted a wider issue in the state of the world at the moment. Evidence is being constantly misrepresented all around us. Whether it is the President of the USA saying there is a migrant crisis to justify a wall (or any of the 7644 other false or misleading statements he has made in office) or the claims on the infamous big red bus that Brexit would give the NHS £350 million per week, or Yakult telling us their yoghurt drink is full of “science (not magic)” now that they can’t pretend live cultures are good for digestive health. There are false claims everywhere.

I stumbled into another example just before I started writing this blog, as I (foolishly) booked accommodation again through booking.com, despite the horrible experience I had last time I tried to use them (which remains unresolved despite the assurances from senior managers that they would reimburse all of my costs). I booked a room in a property in London which they have euphemistically called “Chancery Hub Rooms” to stay over whilst I delivered some training in Holburn. It wasn’t a hostel or a hotel, but just a small terraced house. This time it had keypad entry to the property and to the individual room, which is a system that I have used successfully several times in Cambridge. Unfortunately it didn’t work so well in London, as they changed the codes twice without informing me. Once this resulted in locking me out of the room on the night of my arrival (and meaning that the beeping on the door as I tried the various codes they sent me woke the lady in the neighbouring room, due to the total lack of sound insulation in the property) and then by locking me out of the property the following evening, when all my stuff was locked inside. It also had glass inserts above the room doors that meant your room lit up like Times Square when anyone turned the landing light on. I then discovered that the building (which I already recognised to be small, overcrowded and not complying with fire regulations) had walls like cardboard, when the couple in the next room had noisy sex, followed by noisy conversation and then a full blown argument that lasted from 3am to 4am – despite me eventually in desperation asking them quite loudly whether they could possibly save it for a time that wasn’t keeping everyone else in the building awake. Of course Booking.com didn’t see it as their problem, and the property management company just blamed the other guests for being inconsiderate.

So I felt like I should be able to reflect my negative experience in my review. But oh no, Booking.com don’t let you do that. You see, despite seeing that properties appear to have scores out of ten on every page when booking, you can’t score the property out of ten. What you can do is to determine whether you give a smiley that ranges from unhappy to happy for each of their five ratings (which don’t, of course, include quality of sleep or feeling safe). So if you think the location was convenient, the property gets a score above five out of ten, no matter what other qualities mean you would never wish to sleep there again. But worse than that, the Booking.com website forces reviewers to give a minimum length of both positive and negative comments, but only displays the positive comments to potential bookers. So my “It was in a quiet, convenient location” gets shown to clients, but you have to work out how to hover in the section that brings up the review score, then click the score to bring up the averages, then click again to access the full reviews, and then shift them from being ranked by “recommended” to showing them in date order to actually get an objective picture. Then you suddenly see that at least half the guests had terrible experiences there. However, there is no regulator to cover brokers, and fire regulations and legal protections haven’t caught up with private residences being divided up and let out as pseudo-hotel rooms.

But just as Boris has faced no consequences for his bus claims (even though he stretched them further still after the ONS said he had misrepresented the truth), and Trump no consequences for his lies, and the consultants selling contracts worth hundreds of thousands of pounds of public funds to children’s social care departments proudly told me they just wanted to get on with the doing without that slow process of validation, so the world carries on with little more than a tut of disapproval towards people and businesses who intentionally mislead others. Maybe I’m in the minority to even care. But I do care. I feel like it is the responsibility of intelligent people and critical thinkers, people in positions of power, in the professions and particularly in the sciences, to ensure that we are genuinely led by the evidence, even if that makes the picture more complicated, or doesn’t confirm our pre-existing beliefs. To counteract this age of misinformation, we all need to be willing to play our part. That is why I have always placed such a focus on evaluations and research, and have developed my screening tools so slowly and thoroughly, despite the fact that potential customers probably don’t see this as necessary. I believe that as much as possible, we should be promoting the value of evidence, educating the public (including children) to be able to think critically and evaluate the evidence for claims, and stepping up to challenge misleading claims when we see them.