Why making decisions is NOT only about statistics & data.
why making medical decisions are about much more than statistics, data and maths - so says a maths professor!
I will admit to having a massive girl crush on professor Hannah Fry, she’s a pretty amazing woman. She’s a Mathematics professor at UCL, a broadcaster and an author. As well as being hugely clever she's articulate, truthful and funny. She's often on Radio 6 Music with Lauren Laverne (another girl crush!) with her ‘maths of life’ series. But the reason I’m wanting to share this information with you, is because of a recent piece I heard her talking about that was all about how maths should not be the basis of individual medical decisions. And from a Maths professor that hugely intrigued me, as we talk a lot about choices and making decisions with the pregnant couples I teach on my Hypnobirthing & Antenatal Courses. And there’s so much emphasis from doctors and midwives in using data and statistics to advise (or sometimes seemingly tell) pregnant folk what they should do, and what they shouldn’t do, regarding their baby and their pregnancy - so to hear a different perspective form someone I feels knows their stats and data s**t, well I really feel this is worth looking at. Hence me writing this piece - so read on the learn more….
Hannah Frys interest in data, stats and the medical world came about a few years ago when she was confronted with her own mortality, and was diagnosed with cervical cancer. This brought her desire to understand numbers and how they apply to humans - and to make sure the rest of us do - into even sharper focus. Her conclusion from her own illness was that we are all different when we’re making life changing decisions about our health.
About her own health she says “In January 2021, I was diagnosed with cervical cancer, which wasn't a fun day as they go. The problem with my particular case was that we weren't sure how far it had spread. It looked like the cancer had gotten to the lymph nodes, which really reduces your chances of survival, but it was a bit unsure. Everything was a little bit hazy. And what happened was the doctors decided to treat it as though it had spread. So I had a very radical surgery. And in part, I think that my experience of being cancer patient just changes your perspective on everything.”
False choice and spectrums of choice
Doctors told Hannah who's now 38 and has two young children, that by having such far reaching surgery, which included removing her cervix, her womb and the lymph nodes, she would maximise her chances of beating cancer. But her experience of the surgery and subsequent side effects has led her to question whether people facing diseases like cancer are being given all the information and help they need to make informed decisions about their treatment. For me working in the world of birth this is really fascinating. If someone who has a life threatening cancer questions if she was given all the facts - what about a pregnant person who is not ill and does not definitely have a thing that will cause harm if nothing is done. But instead simply has a baby that has a growth chart that’s not on the 50th centile, or that they are simply a certain age, or has reached a certain number of weeks gestation - what about those folks being given all the help and information they need to make an informed decision? And not just having stats barked at them, and lots of talk of risk to their baby. I really feel this is something to think about, and for maternity clinicians to think about too.
After her treatment, Hannah says that “I've realised that actually it was sort of a false choice. It really wasn't a case of either take out everything or take out almost nothing. There were other possibilities along the way, there was a spectrum of choice. And I think that there were many calculations to consider - calculation of risk of the cancer returning, the risk of the cancer killing me, the chances of how far the cancer had spread so far, and also really the cost of that treatment to me and my long term quality of life. That whole calculation really happened without me. “
I hear stories from a lot of pregnant folk, and postnatal mothers too, saying exactly this - that ‘the whole calculation happened without me’. And that is so sad, and also it’s not true informed consent. I also know that so many people are given what Professor Fry called ‘false choice’ - that all the options were not fully explained, that all possibilities on the spectrum of choice were not discussed.
feeling you actually have and made a choice - true informed consent
Hannah Fry goes on to say that although she’s “certainly not for a second suggesting that there was any sort of negligence on the part of my medical team. You know, looking back at it all, I probably would have made the same choices. It's just more that I think as a patient, you want to have that chance to look back and feel like you had agency, to feel like actually it really was a choice. It was properly informed consent.”
Having agency, and that you know all the possible risks of the outcome and really important. To look back on any health or medical decision and know you had a choice, that you could have made a different choice is important - not that any healthcare worker made the decision for you or didn’t tell you the full picture and so you were pushed down a pathway that looking back was not right for you. If that’s how you feel about pregnancy and birth decisions looking back, it can potentially lead to distress for a lifetime or could mean that you or your child has to live with side effects (small or very large) in the short or long term too.
Hannah is now free of cancer, the chance of it returning being put at one in 10. But as well as being unable to have any more children. She now has to live with a serious side effect where excess liquid caused by the removal of lymph nodes, causes about swelling in her legs, a condition called lymphedema. It turned out that the removed lymph nodes weren't cancerous, but doctors could only find that out if they were removed. She was told before the surgery that there was a one in four chance lymphedema could develop.
Statistics are not the only decision making tool
Following her cancer experience, Professor Fry became obsessed with the statistics behind cancer. She made a whole Horizon BBC TV documentary called ‘Making Sense of Cancer.’ in 2022. She began investigating other patients experiences of cancer and their treatment choices. In it she starts to interrogate the way we diagnose and treat cancer by digging into the statistics to ask whether we are making the right choices in how we treat this disease. Are we sometimes too quick to screen and treat cancer? Do doctors always speak to us honestly about the subject? It may seem like a dangerous question to ask, but are we at risk of overmedicalising cancer?
And if we can ‘overmedicalise’ cancer, a disease that can kill us. Surely we can overmedicalise pregnancy and birth too = not a disease or illness, simply being pregnant and having a baby. The completely normal, natural human event or creating more humans - the survival of our species!
For the research for the BBC documentary, Hannah interviewed many people. She found what they heard the doctors saying, when they were in a highly emotional state of getting a diagnosis, was not what they actually said. She explains “I went to a cancer clinic and I met a patient called Ann and she had just been diagnosed with breast cancer. She'd had a lumpectomy so a section of her breasts were removed. And her doctor was recommending that she be given chemotherapy. And her doctor, a really brilliant doctor called Julie King, really kind and compassionate and I sat down with her to go through all the numbers. And she said and was in her 60s. She said to her okay, if you do nothing else, if we don't touch you again, we just send you home today your chances of surviving another 10 years 84% But if we give you chemotherapy, we can increase that to 88% - a 4% difference essentially. And, and she took her through the side effects and and decided that she wanted to go ahead with it. And outside I went to go and speak to Ann and I said okay, that's quite a big decision. To make, you know, a 4% difference. But she said, I have to have chemotherapy, otherwise I'll die. And I was like you did not understand the marginal benefit of this treatment.”
Hannah goes on to say that “I sat in on a lot of these appointments with lots of different doctors. And I really do think that Judy was one of the best. And I think that actually if you try and take somebody who's in a moment of crisis and give them a statistics lecture, it's not appropriate for everybody. And so for me, I think that actually, it's not really about using the numbers. I think it's about having somebody who understands the numbers, who can translate them, and then to ask me What it is that I care about, tell me what it is? What do you want to preserve the most? And Let's work out together the treatment that's right for you. Rather than just listing a load of statistics expecting somebody else to do that interpretation for themselves when they're in that moment of crisis.
why being listened to is so important
So what Professor Fry realised is that being listened to my medical professionals is so important, and that you have to TRUST that medical professional and that they are listening to you as an individual - not just doing what they want to do. That having a conversation with a medical person that you trust who can interpret the data but then apply it to you as an individual patient and having asked you - what’s important to YOU - is really vital to get good healthcare that you can look back on positively. Just blurting out a load of data and numbers at the population level, then telling you what you should do, is NOT good healthcare at all.
evidence of ‘overtreatment’
Professor Fry then looks at some interesting research on ‘overtreatment’ of medical conditions, and how this may not actually improve health outcomes.
“There is a screening programme that was introduced in in South Korea and as you might expect, when you screen for thyroid cancer, the number of cases of thyroid cancer that were found shot through the roof they picked up on a lot of them. Lots of people had these surgeries to their necks. Quite a serious surgery to have. And everyone thought they'd done really well we found all the cancer, but then his time lagged of course, but when you looked at survivability or you looked at the statistics of death rates to find thyroid cancer, literally the dial did not move. It made practically no difference whatsoever to the number of people whose lives were saved, which essentially means that all of these people that had had surgery to the next and all these people they've been told that they had cancer that could kill them. It didn't save any lives. It's incredible.
It's worth emphasising that's just as just one particular absolutely screening programme, just one particular types of cancer, but still it's it makes you think it really does. It really does. Are there any other sources of data on overtreatment or how much treatment is necessary or unnecessary? “
This really resonated with me, as pregnancy and birth have become areas of ‘overtreatment’ in the eyes of many birth workers. Without any evidence that it improves outcomes for mothers and babies, and in fact causes harm.
so how to make the best choices for you in pregnancy and birth?
All of this making choices, understanding informed consent, decision making, using data and statistics, working in partnership with your doctors and midwives, is SO important for pregnant couples. To have a birth you look back on in a positive way, no matter where you birthed or what type of birth you have, is really important. So we look at this in much more detail as an important part of my Hypnobirthing & Antenatal Courses, I give you tools and techniques to help you made decisions, to stay calm when you talk to doctors, we talk about your and your babys human rights in birth, we look at really good questions to ask your team to get the best out of them, we look at where to get stats and data (if that’s your thing) and how to interpret that simply in a way that works for your brain! (so you do not have to be a maths professor!).
And I am always available after the course to chat through anything too - you have my support right up the birth of your baby (and beyond) to navigate your own path in a positive way that’s right for you.
Susan x