The trouble with science

There once was a self-declared expert and leader

Who took on the role of information feeder

He feed us the news

As we sat in our pews

Believing he was the bullshit weeder.

 

Not the best limerick, granted…but it expresses my feelings right now.  That my feelings are in limerick form highlight the ridiculousness of the current state of affairs, and the example I will share with you that ‘set me off’.

My limerick refers to Norman Swan…Doctor Norman Swan…who is the apparently self-appointed ‘expert’ on all things covid.  Throughout this ‘crisis’, he has fed us the language, the stats and ‘what we need to know’…basically don’t question The Swan.  He is all knowing, he is shooting straight and has no agenda.  He is apparently impartial.

Dr Swan has assumed this role because our elected leaders have not – and won’t.  Just as with the Burning Summer, it was the fire commissioner we turned to for leadership.  And there we found real leadership.  He spoke within his knowledge base, with compassion and honesty, transparent and confident – yet cautious.  We trusted him entirely, because he was a true leader – thrust into that role, for a specific time with a specific purpose.

So when covid reared it’s confusing and frightening head, the ABC (who we so relied on during the fires) offered up Swan.  And we bowed to him.  This was not leadership, it was desperation.  A country still stunned and numbed by That Summer, now faced the next challenge.  Weary, we latched onto the first person that seemed to speak with confidence and sense.

Dr Swan is a journalist and broadcaster, who happens to have a degree in medicine.   Using his status as doctor and  ‘science’ he aims to inform us.  You may also like to know he co-founded Tonic Health Media, a medical marketing company.

And so with this picture painted, I present to you the example that set me off…

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This appeared in my feed, as someone I follow had commented on it.  It caught my attention because it was not about covid, but a birth intervention – Vitamin K.

My response:

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The reason this is not a great headline is it is inflammatory and misleading, classic click bait.  Being not unfamiliar with vitamin K, this framing struck me as very odd.  Damning even.  “Not a great headline” was a serious understatement.  And listen I did: It is only 6 minutes, if you want to listen (tone helps) but I’ll take you through the transcript:

It begins:

Norman Swan: Vitamin K deficiency bleeding is a potentially fatal condition in babies, and it’s preventable with a vitamin K injection at birth. But a 24-year-long study of the condition in Australia has found that an increasing number of parents are refusing to let their baby have the needle, and it’s higher among parents choosing home birthing. Professor Elizabeth Elliott founded and is still director of the Australian Paediatric Surveillance Unit which monitors about 70 rare problems in childhood, one of which is vitamin K deficiency. But her real claim to fame is that she was once my resident when we were both paediatricians in training. Welcome back to the Health Report, Liz.

Key word here is RARE.  We’ll try to ignore that he has invited a friend, and that this interview focuses solely on her work without bringing in any other context, or related fields.  One opinion, based on a limited view.  But science.

Elizabeth Elliott: Thanks Norman.

Norman Swan: Let’s just start off-piece for a moment. What are you monitoring Kawasaki disease in kids with the COVID-19 pandemic, given the reports from Britain?

Elizabeth Elliott: Look, we have done in the past through the Australian Paediatric Surveillance Unit. We have now started a new surveillance system, the Paediatric Active Enhanced Disease Surveillance system which is an inpatient hospital system, and indeed we are monitoring Kawasaki disease, which is very timely in relation to the Covid pandemic.

Norman Swan: And for those who don’t know what we are talking about, this is this inflammatory disease that children seem to be getting, reports from Britain and the United States and Europe. Have you seen any uptick at all? We’ve had very few cases in hospital, but have you seen any uptick at all in Australia?

Elizabeth Elliott: Not that I’m aware of at this stage, but of course everyone is looking out for it.

This aside, perhaps to remind the listener that Swan is The Chosen One, and to establish his friend as an acolyte, is both strange and irrelevant.  A wasted minute in a short segment.  Of interest here though, is “but of course everyone is looking out for it”….seek and ye shall find.  Confirmation bias is an issue in science.  It is why we have strict protocols and peer review.  If we are to have asides…this is one worth mentioning.

 

We continue…this time getting to the topic of Vitamin K:

Norman Swan: Tell me about this vitamin K story. Why is vitamin K so important at birth?

Elizabeth Elliott: Vitamin K is very important because it is needed to manufacture clotting factors which in turn stop us from bleeding. Now, we get vitamin K through our diet or through our good bacteria in the gut which manufacture it or through taking multivitamins, but babies don’t eat and don’t take vitamin pills, and very little vitamin K is passed either across the placenta from the mother or in breast milk. And hence if they don’t get vitamin K at birth, they are vulnerable to bleeding.

At this point in the proceedings, I’d like to offer you some questions to consider:

If babies naturally have low vitamin K, and breast milk naturally has low vitamin K…could it be that this ‘low’ is just normal?

And why are babies vulnerable to bleeding at birth? Could it be because we interfere? Could it be that we hurry them along, interrupt normal hormones and create the problem that causes the need for vitamin K?

Norman Swan: To what extent? Is every baby vitamin K deficient or is it just a relative thing?

Elizabeth Elliott: Well, pretty well, yes, and so it’s estimated that about 2% of all babies might develop classic vitamin K deficiency bleeding, so that’s a large number of babies. And this has been known for decades of course, and vitamin K has been used routinely at birth since the 1960s.

Large is relative, and does that 2% warrant the other 98%?  Wouldn’t it be more prudent, nay scientific, to try to understand the 2% and identify the risks; such as difficult birth, or family history, or some other factor that rigorous scientific investigation would reveal?

And because it’s “been used routinely” since the 60s, that is some kind of reason to not question it?  That’s not very scientific.

Norman Swan: And what happens in vitamin K deficiency bleeding, where do they bleed?

Elizabeth Elliott: They can bleed almost anywhere, so often from the gut, the nose, the umbilicus, after a circumcision, after the heel prick tests that they have to look for congenital diseases, but most worryingly they may bleed into the brain and develop seizures or have a stroke or indeed die.

Oh Gosh…that is frightening.  In the absence of any knowledge or understanding of the causes and risks, this statement makes it sound like a random time bomb, dangerously lurking…but it is ok.  A simple shot of vitamin K solves it.  The mention of circumcision is odd.  This is not a ‘routine’ procedure.  Key here is that certain circumstances place the baby at increased risk, namely circumcision and the heel prick test (there are others).  These two examples are not things that have to happen, and are completely unrelated to normal physiological birth.  A question here would be: how many of those refusing vitamin K are also refusing the heel prick? or for that matter not circumcising? or have experienced normal physiological birth?

Norman Swan: What did you find when you did this 24-year follow-up of the surveillance unit?

Elizabeth Elliott: We found, as expected, that this is a very rare disorder, but that it does occur and that there may be deaths. So in this long period we identified that about 10% of the children that we found died and they all died from this bleeding into the gut. We found 58 cases in the 24-year period, which is less than two per year, and what we did find was that they corresponded to changes in our national health policy regarding the administration of vitamin K. There’s a bit of a backstory here in that we were all using IM vitamin K, and in 1992 there was a published paper which suggested that there might be an association between intramuscular vitamin K given at birth and later childhood cancer. And so our recommendations, government recommendations, were that we change from intramuscular to oral vitamin K, and that resulted in a spike in cases.

So a decision was made based on the best evidence at the time….the condition Vitamin K addresses is very rare…but can be very serious.

Norman Swan: Even though there was no relationship.

This was established LATER..  as we see next…this interjection by Swan is for ‘journalistic’ dramatisation.

Elizabeth Elliott: Absolutely. Later the link between vitamin K and cancer was totally disproven and we reverted to the IM policy, and now we see virtually no vitamin K [deficiency] unless it’s either not given or given in the wrong dose.

The key word here is LATER.  Her unscientific analysis of that reveals her own bias, one would think she must gain something from the universal use of vitamin K…or her bias is creating a belief.

Norman Swan: And how did you detect the fact that some parents are starting to refuse the injection for the baby?

And now we get to the bait, the headline act, the pièce de résistance (if you’ll permit me a play on words)…

Elizabeth Elliott: That was one of the questions that we asked on our questionnaire. So paediatricians each month are asked to report cases to us, and then if they report a case they’re asked some questions. And we asked why didn’t the child receive vitamin K. And parents say that they often feel it’s unnecessary or it might be painful, it might not fit with their alternative lifestyle. There is still some of them frightened about cancer. And we certainly found certain associations between the parents who refused and those who didn’t.

These questions are about uncovering why people refuse, so that ‘communication’ can be targeted to close the gap.

Norman Swan: And you noticed a link with home birthing?

Here I remind you of the questions:  could it be that parents (and midwives) are making an informed decision to not subject the baby to an unnecessary injection based on the physiological birth process.  In the absence of risk factors, and in the context of informed consent, the parents make a decision in the best interest of their baby.

Elizabeth Elliott: Yes, there was a link with home birthing. And this is substantiated in the literature, that homebirths, children are less likely to get their vitamin K than in hospital, midwives are less likely to give vitamin K than doctors, and certainly there’s this sort of geographic distribution of the parents who refuse vitamin K and that aligns, interestingly, with the parents who refuse immunisation.

Not really sure what she wants to say here: that doctors are superior to midwives?  A false hierarchy, but one that perpetuates and often creates a power imbalance.  That too is substantiated in the literature.

Also a little niggle here: they are not refusing immunisation, it is vaccination.  and this is an important nuance, if we want to be scientific.  This isn’t particularly interesting, or surprising.  Unless you are trying to create a drama, and ostracise those who dare to question or refuse.

Norman Swan: So wealthier suburbs, north coast of New South Wales, things like that.

This could just as easily be described as ‘more educated’ or ‘more affluent’…they are clearly trying to emphasis the link between Refusing vaccination and refusing vitamin K, as this is a very useful way to establish an us and them division.  Which, interestingly (yes, actually interestingly) is the MO of the communications we are receiving from the authorities during this covid pandemic.  Us (those following the protocols, doing what they are told, unquestioning) and Them (the questioners).   Most of the questioners are still following the protocols, but we are led to believe that they are against Us, an enemy, and they put us a some risk.

Elizabeth Elliott: Yes, north coast New South Wales, south-east Queensland.

Norman Swan: And you can also get liver disease as well.

Elizabeth Elliott: Well, there are several different types of vitamin K deficiency bleeding; those that occur within the first 24 hours, within the first week, and beyond the first week, and those children who get vitamin K deficiency bleeding beyond the first week of life are more likely to have an underlying liver disease than those who get it earlier.

Norman Swan: Oh, so it’s secondary to the liver disease.

Elizabeth Elliott: Exactly, yes.

Norman Swan: So the bottom line here is it really is prudent to get this and it’s safe.

Here swan brings in some new information, which is an issue in the rare part of the story,  here we need to ask more questions.  What is the difference between within 24hrs (birth related?), within the first week and beyond (hereditary? serious complications at birth? other related factors?).  There are many factors that would come into play, and it is very dismissive to just paint a picture of scary and random, when it may be more understood.  And to draw a conclusion that is one fits all, again ignores autonomy and informed decision making, based on full understanding and context.

Elizabeth Elliott: It is safe, and in fact in 2019 the American Academy of Paediatrics declared this a public health priority because so many people were refusing. So they really want to educate people that it’s very safe and that it will entirely prevent, if given correctly, what could be catastrophic bleeding.

Educate in this context means convince, clearly.  Which is a form of coercion.  How dare people think for themselves.  And where people are making decisions based on inaccurate or incomplete information, this is a concern.

and so ends the segment:

Norman Swan: Liz, thanks for joining us.

Elizabeth Elliott: Pleasure. Thanks Norman.

Norman Swan: Professor Elizabeth Elliott is Professor of Paediatrics at the University of Sydney and directs the Australian Paediatrics Surveillance Unit.

I returned to the twitter thread to add:

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This was a horribly missed opportunity to explore this issue broadly, with various ‘experts’.  It is also are horribly disrespectful segment which fails to highlight anything about informed consent.  The replies to that tweet are clear: The People agree. HOW VERY DARE parents – namely Mothers – question The Science.  And here we come to my bugbear.  What science?  Nothing in this program was science.  It spoke of a technology, based on science.  It spoke of a questionaire designed to find out why there is not complete uptake… of an intervention requiring informed consent.  At no point does it speak of the importance of informing parents, but rather ‘educating’ them.  This is an ‘infommercial’ for Vitamin K.  BUT WHY?

To save a tiny number without having to actually interact with parents?

To say there is no risk to vitamin K is a huge claim.  In the comments on the twitter post, one person says that their niece was injured (does not say how, or what the result was), but there is a risk…a needle is being inserted (as this is the favoured approach, even though the oral option is offered).  This procedure is marketed as being one of the few procedures ‘having just about no risk’.  This carries a risk from the injection: of infection, bruising or pain.  There is an element of distress, relieved with breastfeeding or cuddling the baby.  There is a risk the baby is given the wrong drug – which can be alleviated with due diligence.  Anaphylactic shock, rare, but reported.  The other ingredients in the injection also need to be considered, and these vary from suppliers.  If we are going to be scientific about this, we may be able to conclude that the Vitamin K does more good than harm on a population basis, but for parents who are making a determination on an individual basis: this is not good enough.

The issue with the 1992 paper regarding cancer, was a much bigger back story than the program could cover.  It was a tale of journalistic misreporting, overstating the findings, and this leading savvy parents to rightly express concern and take action to protect their babies.  To infer the paper and it’s findings are refuted is also a misrepresentation of the backstory.  How the follow up studies were undertaken needed to be considered (the study design), just as any findings needs to be properly considered, and reported.  No One Paper will finish the story.  That is not how science ‘works’.   I highly recommend reading Sara Wickham’s insights.

Dr Wickham has a book and a course focused on vitamin k and decision making.

 

Ultimately it is the responsibility and the right, of parents to weigh up all the risk and benefits and make a determination of what is best for that baby, in the context of that baby.

The majority of  twitter respondents seemed to feel that parents (mothers in particular) should not have this right.  They were also very quick to accept the headline and the program as scientifically sound.  For example, these ones directed at my response:

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If you are interested, here is the link to the original tweet by Normal Swan.


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