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.

 

Holding the buck: Some thoughts about accountability in the modern marketplace

A couple of weeks ago, I gave a talk to the Institute for Recovery from Childhood Trauma at the House of Lords. I decided it would be too stressful to travel down that morning, so about three weeks in advance I booked an apartment through booking.com. I’ve stayed in apartments and rooms through online sites quite a few times before without incident. Normally they send a code for the door by text or email, or instructions to open a key safe. However, this booking was confirmed with instructions to collect the key from a nearby address by 9pm (I was told if I arrived later there would be a £20 late collection fee). So I caught an earlier train and got a taxi to the pick-up address, which transpired to be an office building, locked up for the night. The security guard on site who came out to see why I was loitering had never heard of this being a collection point for apartment keys. So I spent 45 minutes waiting at the pick-up address and checking the apartment address just down the road, with no ability to check my email or find the phone number of the owner due to the o2 outage. I then found a restaurant which let me use its wifi to contact the apartment owner. He answers the phone as Booking.com and says the pickup address sent to me by email was never given (despite me having it in writing on my screen as I spoke to him) and that I had not confirmed the time. He says he will send a man to meet me with a key. But he isn’t willing to send the man to the restaurant in which I am sitting, I have to go wait across the road outside Patisserie Valerie (which is also closed) for a man in a red jacket.

In about 15 minutes that man arrives. He greets me by name, but does not offer me any apologies or identification. I can’t tell if he is the man I spoke to on the phone or not. He does not provide a key to the apartment, but tells me to follow him and walks off in the opposite direction to the apartment. I ask him where we are going, he says “to the apartment”. I say that it isn’t the right way, and I don’t feel comfortable following a strange man to an unknown address. He is short with me and tells me that he is taking me to an alternative apartment, because a cleaner snapped the key in the apartment door 20 minutes previously. I find this suspicious as a) I’ve been waiting at the apartment and just up the road for 90 minutes and nobody has come or gone from it in this time, and b) why would a cleaner be in an apartment at 10pm that is supposed to have check-in from 3pm to 9pm, and c) why did the man on the phone not notify me of a change of address or email me with a change of booking through the site on which I had booked?

He leads me down less busy streets and alleys across Soho. I start to get anxious that I’m in a part of London that is unfamiliar to me, and have no idea where I am going. I will not be at the address I have booked and nobody will know where I am, its past 11pm and dark, and I’m being led by a total stranger who has shown me no ID. So I call my husband, explain the situation and start reading out street names so he knows where I am. He says that I sound nervous, and that if my gut doesn’t feel like this is safe I should trust it and go somewhere that does.

My mind goes into overdrive. I start worrying I’m being taken to an unknown address, where I might be robbed or attacked or anything. I’m thinking perhaps they gave the fake address as a means to be harder to trace, or perhaps they use the photos of one apartment in a good location to put people in cheaper accommodation in less favourable locations. Perhaps he is nothing to do with Booking.com and is just a confidence trickster. Did he definitely use my name? Was he the man on the phone? I have no way of knowing. I can’t just follow a stranger to an unknown address in the middle of the night with no explanation. I find an open wine bar to run into and hide.

Suddenly, all those feelings are right at the surface and I’m sobbing with fear and hiding behind the counter of the wine bar until the man has gone. Then the man who claims to be from Booking.com (I still can’t tell if he is also the man in the red jacket, or someone different) calls me and asks where I am, and I say “I don’t feel safe dealing with you and being taken to an unknown address, I’m going to find somewhere that feels safe to sleep”. It seems like something I should be able to take for granted, that now seems out of reach.

The staff at the bar are super-nice and patch me up, give me some water and use of their wifi. They offer me wine and fancy olives. I take the latter (and they are the best olives ever, as well as thoroughly nice people, so do check out Antidote if you are ever in Soho). When I calm down a bit, I start searching all the usual websites to find a hotel room. I then find out there is nowhere else to stay. And I mean that literally. Even when I increase my parameters to travel up to an hour from my location, nothing is coming up on any hotel booking site that isn’t fully booked. So I’m sat there in a random wine bar in Soho, 200 miles from home, and there are no longer trains to get back there even if I didn’t have to be in London by 9am the next morning to speak at the House of Lords.

At nearly 11pm I find one, very expensive, hotel with a single room available through LastMinute.com. I book it, pay and then pay £20 to get a taxi there only to find it is overbooked and they’ve already turned away 4 other customers. It is a converted Georgian townhouse with a small number of rooms, so I’m sat in the only chair in a tiny lobby. I’m repeatedly calling LastMinute, and it has gone past midnight so there is no longer even a means to find another hotel (as you can’t search for availability for the previous night), and they tell me they don’t have a room. It takes me four calls and 47 minutes on the line to speak to Last Minute’s customer services, who conclude they can’t find an alternative room for me, and don’t see that as their responsibility. At 1.25am they suggest a room is available at the Taj St James Court hotel and they have reserved it for me. I call them, they have no rooms and have never heard of me. It is now 1.30am, and I am making plans to sleep in the bucket chair I am sitting in, in the hotel lobby, as I have nowhere else to go* and it is raining heavily. Eventually at 2am the hotel say that one guest has not checked in yet, and agree to take the gamble and let me use the room. I get less than four hours sleep for twice-the-price-I’d-normally-set-as-my-upper-limit-for-a-room, before having to head out to speak at the House of Lords.

Having given the talk** I decided to complain to both Booking.com and LastMinute.com. The response from the former was “You got a refund for the apartment, so it’s all settled” and the latter offered “€20 as a goodwill gesture due to the 2 hour delay checking in”. No recognition of the fact the experience was traumatic, wasted 5 hours of my evening, cost me 3 extra taxis, and left me 200 miles from home without somewhere safe to sleep. I am faced with the realisation that trauma is subjective, and to many men hearing the tale I might have taken fright for no reason and brought the events that followed upon myself. I am forced to say “imagine if your Mum were in this situation” when explaining it to try to trigger sympathy. But nobody really cares. The apartment owner feels he has done his bit by refunding (and the website has conveniently blocked me from leaving a review). The men in the call centres were in another country, abstracted away from the problem. The customer service teams are seeing the facts in retrospect, not the feelings the experience generated, and are motivated to protect their brand rather than genuinely caring about me as a customer. The night manager of the hotel cared, because he met me in person, and saw I was upset. As a result he tried his best, but he wasn’t in a position that could resolve the problem.

And that’s where I finally reach the point. In a system where you book with a middleman who doesn’t actually provide the product you are paying for, nobody really feels accountable for the service you receive. And, to bring this round to being relevant to a wider point for health and social care, this model is being increasingly replicated in public services, where the NHS or local authority commission the service from another provider, who is assumed to be responsible. That split between online broker and real life provider, or the public sector split between purchaser and provider seems like a good model for each of those parties, as the purchaser delegates responsibility whilst fulfilling their obligations (or making a profit, in the case of online brokerage sites) with much reduced staffing and without having to invest in any tangible assets. The provider gains access to a wider market, rather than becoming obsolete. But somehow inevitably, as in my experience, the recipient of the service misses out in the middle, and finds out there is minimal quality control and an absence of clear lines of accountability when things go wrong or aren’t delivered as planned.

For example, there is a level of risk aversion that has made local authorities anxious about providing residential care placements, because of the prevalence of historic institutional abuse and the increasing awareness of child sexual exploitation and involvement in county lines (and the accompanying risk of compensation lawsuits). The result is a marketplace where private providers (many of them owned by international venture capital groups who pay minimal UK taxes) use unqualified, low-paid staff to care for some of the most complex and vulnerable young people in the UK, and it is hard for recipients or commissioners to distinguish them from provision that has different financial or delivery models. Likewise in health (and public transport) private providers cherry pick off the profitable services, whilst the public purse is left holding the can when they don’t deliver. There is a move to entrench this even further with the push towards Integrated Care Providers, where private organisations can manage the entire health and social care services for a particular region of the UK, in a way that is potentially unaccountable for its decisions and not subject to the rules for public sector organisations (like Freedom of Information requests, public consultation, or being subject to Judicial Enquiries if things go wrong, or even their statutory obligations). I think that might be a recipe for disaster, but then, I’m not a fan of corporations and the super-rich profiting from the suffering of the rest of us.

Update: Booking.com have agreed to reimburse my costs in relation to the apartment (but have not yet done so), whilst LastMinute.com have not yet replied, telling me they take 28 working days to respond to customer complaints that don’t accept the initial boilerplate response. I suspect that just like in health and social care, the (explicit or implicit) policy is to respond to those who kick up a fuss and have the potential to create negative publicity if things are not resolved, meaning that those who are devalued most by society have the least redress when things go wrong.

*call me a wuss, but I declined the option of having one bed in a bunk room in a hostel shared with 8-12 strangers
** which I will give again and video as soon as I shake the cold that’s currently making me croak