Apparently I’m the only one that understands the concept and usage of healthcare statistics.
Recently a commenter got angry at me for saying this:
“. . . Are there people who have had a bad experience with ECT [electroconvulsive therapy]? Yes. Are there people who have had very bad experiences with ECT? Yes. But then, I was hit by a car, so things happen. It’s not really the car’s fault. . . ”
My point, of course, is that there are people who have bad experiences, I would never deny that. But there are people who have bad experiences with everything. That doesn’t mean it’s the typical experience. We work hard to reduce traffic deaths and injuries in North America and doctors work hard to try to implement ECT in the best way too.
A Commenter on Statistics
But the commenter felt,
“. . . And you wonder why are people anti-psychiatry? Because they had horrible horrible experience and are consider “oooops” and downplayed number in statistic . . .”
Well, um, yes. That’s what statistics are.
Healthcare Statistics
Healthcare statistics are just like any other statistic – they assert the relative risk of any given adverse effect. And every medication or treatment has statistics associated with its adverse effects.
Side effects are often classified as:
- Frequent: more than 1%
- Infrequent: more than 0.1% but less than 1%
- Rare: Fewer than 0.1%
Or, at least, they are for psychiatric medication, some medication doesn’t get that specific and generally only cares about things that happen to more than 1%.
An example of these statistics would be:
- Frequent: gross bleeding, gastrointestinal ulcers, abnormal kidney function, etc.
- Infrequent: congestive heart failure, hepatitis (some cases fatal), asthma, etc.
And that deadly drug? That would be Aleve – an over-the-counter pain reliever.
Serious Adverse Reactions – Small Statistics
My guess is that if you developed congestive heart failure from an over-the-counter drug, you would be pretty pissed off, if not dead (in which case your loved ones would be rather pissed off). I understand that. But it still doesn’t keep me from taking the drug.
In fact it doesn’t keep anyone from taking the drug, because the risk is so tiny that people don’t worry about it.
That’s statistics. If hepatitis happened to 50% of people, we’d be worried, but if it happens to 1 in 10000, we aren’t so concerned.
Moreover, we don’t know the complications that may have taken place in those who experienced infrequent or rare side effects. This is something that is never discussed in the literature – the adverse effects are simply listed as we’re better safe than sorry.
Electroconvulsive Therapy (ECT) Statistics
Back to the matter at hand. So no, I would never deny that some people have had bad experiences with the very serious treatment of ECT just like I would not deny the dead person who took Aleve but that doesn’t mean that they rule my consciousness.
Because, whether you like it or not, you are a statistic. Not to you. To you, you are an individual. No problem. But to someone with perspective you are one in a sea of people and the only reasonable way to assess that sea and to assess the risks is through numerical analysis of the situation – statistics.
In my case, ECT did not work – that puts me in the minority – a statistic. But I don’t get all up in arms about it. Why? Because I understand that just because ECT works on more than 80% of the people with depression who use it 80% is not 100% and it can’t be expected to work on everyone. My head isn’t exploding because I wasn’t in the majority.
Similarly, when I was crossing the street as a pedestrian and was hit by a car I didn’t cry about statistics because I had perspective. Just think of how many times you cross the road without being hit by a car? The chances are tiny – but it could happen. But do you want to stay on your block for the rest of your life?
Bad Things Happen to Good People
As I’ve said, bad things happen to good people and bad statistics happen to good people too. Somebody is that 1 in 1000. Someone is that 1 in 100000. I’m sorry if it’s you. I am. I hate being that 1 in many. That sucks.
But I can’t let that one person drive my feelings nor my actions no matter how compelling their story may be. Certainly, if the adverse effect in question rises to the level of statistical significance, it should be looked at by doctors and those qualified to review such material, but for me I have to work with what I have – the numbers.
As with anything it is all about perception.
It was said at a Reduce Suicide conference earlier this year, “Statistics are people without tears.” interesting thought.
In my opinion statistics are simply a guideline, to give us a point from which to determine a possible course of action, or for information.
The bottom line for me is, I don’t tend to look too seriously at statistics – I am an individual and one treatment that works for me, may not work for another. I have heard many stories of ECT working for people who have exhausted every other means of treatment. I also witnessed when I was in the psychiatric ward a young girl and an older woman both receiving ECT. Seeing them after their treatments left me angry with it, wondering how could they. As I learned more about it, and spoke with those who have received positive results from it, I came to understand it’s another form of treatment that is effective for some and not others.
As always Natasha, thank you for writing about the tough stuff. As I said – it’s all perception, no right or wrong.
Lee
Hi Lee,
I agree it’s about perception, but I think it’s about maintaining to perceptions at once – one as you as an individual and one as you as part of a larger group. And I don’t see why one of those perspectives is “wrong” or another is “right” – they simply exist simultaneously.
You’re right, “statistics are people without tears” and I think this indicates that it’s important not to forget about the real people behind each number. I do absolutely agree with that. But those individuals just can’t be part of a treatment decision or you’d simply never be able to make a decision as you’d be far too bogged down in individual struggles.
You do have a point, and one I’ve written about actually, about not looking too seriously at statistics as you, may experience any, or none, of the listed effects. You can get an idea of an experience from statistics but your experience will invariably be unique.
I can understand your frustration at seeing people right after ECT – it is not a fun treatment to watch. But it’s the bigger picture that you have to keep in mind, which is what I think you eventually saw. That pesky bigger picture.
– Natasha Tracy
I think that the “statistics are people without the tears” is true in an ideal world. However, much of the statistics we are given today have already been twisted and filtered to the point where, even in a scientific setting, they are serving a bias.
I bring this up because right before I read this post I came across an article (http://www.slate.com/articles/health_and_science/medical_examiner/2005/09/drug_secrets.single.html) about the FDA that noted, “Some clinical trial data are considered “trade secrets,” or commercially protected information, and thus are exempted from release under the Freedom of Information Act.” I just think that this adds yet another element to the idea of perception that you mentioned.
Hi Emma,
Yes, you are right about that, but statistics in clinical studies are quite reliable (in my opinion)if you look into what they’re really saying. The statistics that are considerably less reliable are those used in the media as _they’re_ the ones twisting things and not representing exactly what the scientists have said.
And yes, you are correct that some studies are considered trade secret and not published in journals however, the FDA still has record of these studies and some analyses has been done on them
If you’re curious, I wrote about one study that incorporated this data into a meta-analysis that still shows that antidepressants are approximately as effective as other medications used in internal medicine: http://www.healthline.com/health-blogs/bipolar-bites/efficacy-psych-drugs-do-antidepressants-work
– Natasha Tracy
I agree, it tends to be more the media’s desire for a certain angle that warps the data. They tend to do that on most topics, unfortunately.
And thank you for linking me to that post, I had missed it. Very interesting!
Very interesting post.
I don’t really understand what’s inherently threatening about “being a statistic”. Is there any way, really to get away from it? I am 1 of x (I don’t know the number) people that my doctor treats; I am still treated very well. I was one of x brain surgeries done at Toronto Western done in 2000; I have no complaints.
Being a statistic doesn’t dictate how you’ll be treated.
Or have I missed the point? Be gentle, I haven’t had coffee yet…
Hi GirlWithTheCane,
Actually, I think you have the point exactly. I wrote the piece because I don’t see anything so inherently threatening about it either. It’s just life. It’s just a fact. People can rile against facts all they like but it doesn’t change them. I think it’s just accepting reality.
And no, it doesn’t dictate how you’re treated – as you’ve said.
– Natasha Tracy
I agree with you 100% on this one Natasha. I realize some people don’t want to see themselves as just a number. I know I don’t, but the truth is the truth when it comes to drug testing and reporting of side effects. It won’t change just because we don’t like it.
The only thing I don’t agree with is the first line of your post, “Apparently I’m the only one that understands the concept and usage of healthcare statistics.” I think you knew even as you typed this – it isn’t true. I never take any medication without reading the entire enclosure/attachment for that medication. I usually also research it online. I do understand the the concept and usage of healthcare statistics.
Thank you for your nerves of steel!!! It seems to me summer must bring out more people who feel the need to disagree just to disagree – although I would never want to stop anyone from voicing their opinions.
Hi Norell,
OK, I understand not agreeing with the first line. It was really just me expressing my frustration with a certain faction of people. It’s not that I’m the _only_ one. We call that hyperbole – exaggeration for effect. I know many people who make use of healthcare numbers in their healthcare decisions – which is great and something I absolutely encourage.
I think the issue is that people don’t want to be considered one of those statistics in spite of the fact that they use them! I don’t find the idea of being a statistic threatening; I find it reality, like you said.
Thanks for the comment.
– Natasha Tracy
It’s not just we are “used” as number… it’s how many doctors treat the crazies. And from a mental health advocate, I would just expect more compassion. It’s like being a peace activist, looking at statistics and deciding cluster bombs ain’t that bad, because more people die in car accidents. I am still kinda amused my commented spurred this article. I still value myself more than a number in statistic and I would expected to be treated so. It doesn’t MATTER, I am one of X… I still deserve compassion…. more than “sorry, but…”.
In the eastern bloc, there used to be mentality that “there’s enough people in the world”. In some parts of the region… there still is and it’s awful. So this is a major trigger for me. And I don’t really care it’s up to me to deal with that… I don’t really WANT to accept cold hearted thinking when it comes to people. Yes, bad things happen, but they should not be chalked up with “oh, bad things happen, nothing to do about it”.
So yes,I find looking at people as numbers, highlighting some facts, while chalking up others… with aim of agenda setting… well, i do find it threatening. Or dishonest at least.
First off, statistics are numbers, reported to be based in reality, anyone who has a clue, knows that stats can be manipulated to serve almost any conclusion. At the very best, you can use stats to help guide you in a decision…Ask anyone who deals with stats for work and they will tell you there are no conclusions based on stats. With that said, what I find most glaring in the diagnosis, treatment and recovery from any illness, let alone, a mental illness, is the complete submission of a patient. I have learned in my journey thru the public and private mental health systems is that it is up to me to be the informed, proactive consumer. Can everyone be that way? No. Many are either incapable and even many more are just lazy or too trusting.
ECT for me relieved a few symptoms but not enough to consider doing it again. The side effects out weighed any benefits, for me. My depression is extremely medication resistant. I continue to battle the affects of my depression daily. I am also a very informed, well read consumer. It is my duty to be knowledgeable about my own illness.
I found this whole argument about stats to be rather esoteric and to be honest, boring. You give me the data, give me the subject of what I want to prove and using the same data I will prove myself right and wrong….Stats are but one part of the whole picture in making a decision… Just my humble thoughts
Hi Lucien,
Yes, statistics can be manipulated, there is no doubt about that and I also agree that they are not conclusive but rather indicative. But I’d rather have indicative data than no data at all (and I suspect you would agree as you’re well-informed).
I don’t agree that diagnosis, treatment and recovery from an illness requires submission. I actually feel very active and I realize that I don’t do anything that I don’t want to do. There is no one in my bathroom but me when I take my pills in the morning. No one chooses to take them but me. And my doctor knows that about me. If I don’t agree with something, I will ask for something else. I realize not all doctors are as amenable as mine, but I still don’t think treatment requires submission.
Sorry you found it boring :) They can’t all be winners.
– Natasha Tracy
There are many unwanted side effects from ECT which are statistically significant – far worse than it “just not working.” And the statistics can help pinpoint why a specific therapy didn’t work or caused serious problems. Are there shared characteristics between people who experienced difficulties? Could this help explain why things went wrong? They should not just be ignored. ECT has come a long way since it was first introduced, and it has a long way to go. Ignoring this is really just not scientific..
Hi V,
Of course, there are all sorts of side effects from any treatment, including ECT, but that’s not what this article is about. This is about one-off cases and how they should be considered.Yes, when anything raises to the level of statistical significance, it’s important to take that into consideration, but I mentioned that in my article. It’s not about ignoring statistics, in fact, just the opposite.
– Natasha Tracy
I agree with you. The numbers are what we have.
There’s an old story medical students are told about a professor of surgery nicknamed “Professor Death”. He had that name because 90% of his patients died. Why was he allowed to continue practising? Well, he only operated on patients who had been given every other treatment and nothing had worked. They were almost certain to die, but this surgeon managed to save 10% of them. His amazing skill put him at the top of his profession.
The story illustrates that you can’t just look at decisions from one side. Yes, you have to think about the consequences of a medical treatment, but you also have to think about the consequences of not using that treatment. Because you can’t predict the consequences in advance in individual cases, statistics are all you have. And you have to interpret statistics with understanding. You can’t just look at the headline “90% died” and run away screaming.
The people I’ve known who have had ECT have all been individuals, all different. I don’t think of any of them as statistics. But I certainly use statistics to inform decision-making. Even if ECT had a 90% failure rate, like Professor Death in the story, I’d still recommend it to those patients for whom nothing else has worked.
(In fact, everyone I’ve ever known who’s had ECT benefitted from it, but that’s just anecdotal.)
Hi CBTish,
That’s a great story and one I might have to steal, thank-you. And as you said, anecdotal evidence is just what it is, anecdotal, but being helped is _generally_ what people experience, according to those darn statistics. :)
– Natasha Tracy
Excellent post. Kudos!
As you say, the heart of the matter is in the interpretation of statistic, in the context of other known factors, especially the nature of the sample (or population) upon which they are based. I like to borrow from the old erroneous adage about statistics:
There are lies, damned lies and idiots who don’t know how to interpret statistics!
How does writing a thesis in International relations qualify you to speak out about bipolar statistics?
um… it does not. I was just showing another example of cold-hearted thinking in name of “science” even if it is totally not appropriate.
People are not numbers. That is why I ran screaming from the system. I have been told to drop out of school, like it was nothing when I expressed concerns. I have been spewed statistics upon… I felt dehumanized.
I think this dehumanization on global level, when we think of people as numbers and the dead as collateral damage, where “bad things happen” and we don’t even bother to do anything about it (not just when it comes to psychiatry, but when it comes to everything. People consider it “ooops” that people die of preventable causes in third world… and so on)… partly contributes to our mental state. Nobody cares about nothing. Nobody is cared upon. And when one decides to seek help… they are viewed as mere statistic… wonder why (stastically) the success rate is so low? Because maybe when it comes to human soul, we need something more than badly exercised science?
(so actually international relatins showed me something. People use stastics, because they think it will make them look more scientific in their research… instead it ends up with sketch results, because in social science (and I consider psychiatry pretty much in the field… as it deal with human behavior and whatnot) qualitative research is much better tool. So yes, sometimes you have to listen to lot of stories… because simple questionaires will not tell as much. Learn and go from there).
I agree that statistics can dehumanise human issues but I question your proposed methodology. In my experience, the best way to research an issue as this is to use BOTH qualitive and quantitative research. The qual’ should be used to identify the issues and extract from that the language respondents use to describe them; that language is then used to design quantitative questions. This way you end up identifying all the issues that deserve quantifying and (if the qualitative research is done properly) a thorough understanding of them. Thus armed one is in a stronger position to prioritise what should be actioned.
When my friend finished school she became one of those ‘cold-hearted scientists’. She experimented on mice. She analysed things. She observed things in a detached manner. And, she was on the team that developed a vaccine for cervical cancer. What a cold-hearted bitch!
I guess what I’m trying to say with my sarcasm here, is that it is not dehumanizing to use science and statistics to help people. In fact, responding with rational thought is part of what makes us human.
Also, I would prefer a scientifically minded doctor over a nice incompetent one. Caring for the patient is primarily the job of the family and friends. If family and friends are missing, it doesn’t mean that you can expect the doctor to be a replacement for them.
Welll, psychiatry deals with PEOPLE not mice. But it often does treat them as mice though.
If it came to real disease, testable one… yes, i want a doctor who is a good scientist… Shrink? Gawd, he better listen to me, be empathatics… that pretend to be scientiest of all scientists out there. Fact is, psychiatry IS NOT a hard science. It’s just not, as it involves human interaction, feelings, perceptions… Humans even emotionally troubled ones cannot be treated in isolation. Their interactions influence their feelings, moods, emotional health.
Psychiatry tries hard to come off as hard science…. and people are harmed on the way… or not helped as much as they should.
I’ve been thinking about this more. I have heard it said thap psychiatry is more an art form than a science.
My idea – at the moment – is that psychiatry IS a hard science BUT it is way down the evolutionary ladder for a science. In other words, it still relies upon a lot of informed guesswork to arrive at clinical decisions. Sure, diagnosis does rely upon empathy and perceptions, and even intuition, but so too does a lot of medical specialisms. For example, diagnosis of Cushing’s Syndrome is notoriously difficult – it is often mistaken for Motor Neuron Disease and Multiple Sclerosis (sp), and then, the doctors don’t know what is its root cause; their treatment for it is akin to treating insanity by a lobotomy, or blood letting, or the removal of ovaries to treat insanity in women – i.e. treatment for Cushings is the removal of the adrenal gland to stop the production of adrenalin. That stops the CS symptoms but it doesn’t address what cause the the problem with the adrenal gland where there is no tumour causing problems. Another example: The treatment of fibromyalgia rests on trial and error. But no one suggests the treatment of CS or fibromyalgia are not engaged in hard science. Indeed, most scientific discoveries come from trial and error! Pharmaceutical research is littered with trial and error failures, where new drugs fail in clinical trials that worked well in the laboratory, or where they find the proportions of combinations of chemicals, that make up a drug or the temperature at which one is processed, are critical to its effectiveness. Billions of ££’s/$$’s are lost in drug trials that just don’t work! Trial and error is part of hard science. Similarly, the psychiatrist struggles to make a correct diagnosis because different disorders exhibit similar symptoms, like CS does with MS; but the treatment for them can be very different. And then, their tool bag of drug and psychotherapies offers treatments than work with some people better than others for no reason that is yet apparent. Those reasons will probably become apparent as hard science research continues: For example, Bipolar Disorder might, I have heard it hypotheised, be more than one type of disorder, hence subtly different symptoms and significantly different in drug and drug combinations that work with different patients: There is trial and error in finding the right combination and dosage to treat each individual patient. (Collectively we are statistics but in treatment, we are essentially individuals.)
Now, psychotherapy … that IS an art form!
VenusH, thankyou for responding, although I think your response is completely unrelated to what I was actually communicating. I meant that being scientific is not de-humanizing, in fact it is quite a human behaviour. I also meant to say that science helps people in ways that are more effective than simply being nice to them.
Also I’d like to point out that effective clinical communication involves quite a lot of science, something that most people don’t realise.
Hi VenusH,
You are welcome to look at people any way you want, but I ask this, seeing as all I do all day long is hear stories from people – stories that range from “it was the best thing I ever did” to “it was the worst thing I ever did” – which story, exactly, should I base my opinion on?
– Natasha Tracy
(By the way, ECT “works” indicates a 50% reduction in depressive symptoms. That is the standard used for medication, therapy, and most everything else.)
Well, nice to see you comment on my comment… but that was not the point. You seem to DOWNPLAY the bad stuff. You like to play around with the actually statistics by “but doctors mean well”.
And as for statistics… I prefer not to think of humans so. When consulting my thesis in international relations, I’ve been told that one cannot judge wars from moral perspective… perhaps ethnics and morals and values have no place in judging psychiatry either? After all there are statistics… statistics we can manipulate the way we want. Depends how you phrase the question. You can play around with samples. It’s done every day, in every field.
Shall we introduce the term “collateral damage” into field of psychiatry too, so it’s easier to take when bad things happen? I guess I am just not as cold and calculating…. and I do care for people. (Yeah, psychiatrist are people, but they weren’t coerced, badgered and manipulated, lied into being shrinks… while many of us troubled people were into psych treatments).
Have you considered that the 80% for which ECT “works”… is bit sketch and depends on definition of “working”?