Not long ago, if you were ill, you’d see a doctor. Now, you go online.
Want to track your blood sugar? Your heart rate? Your sleep? You can. Need to focus? Want to lose weight fast? Everything is a click away.
But who, if anyone, is regulating this?
As NHS waiting times grow ever longer and patients in the US are priced out of medical care altogether, online health hacks have become indispensable. From mental wellbeing influencers promoting untested therapies, to entrepreneurs peddling their own alternative remedies, the advice seems to really make sense.
These self-styled experts glow with good health and they guarantee results but they don’t know us or our medical history. They don't owe us a duty of care. And they're rarely either qualified or impartial. So why do we trust them?
The issue of multi-billion dollar companies taking over the public health discourse via social media platforms and impeding on NHS territory (including on the very slippery doctor/patient relationship) is indeed one worthy of a good, long book. If I appreciate the dedication Deborah Cohen put into this one, there were some serious limitations (and bias) that I feel should really be brought to light.
The author rightly points out how greedily companies approach patients online, often through the use of celebrities, to push a certain product or medical test. Most of which are deemed pretty useless by science, but even harmful at times as clogging the healthcare system and robbing patients of thousands of dollars (or more). I was glad to see the Kardashians (whose companies rate lower than Shein on the sustainability index...) and wellness gurus such as Paltrow called out.
However, there was a sense that the book was written not to foster a better, more joined up approach to care, but to boost doctors egos that they are usually right to dismiss patients who come to them with... well questions and concerns. Patient centered care you say? Not so much here. This book gave me massive Scrubs' Dr Cox vibes: "JD, you need to remember that patients are scared and stupid".
I'm saying this as this book follows the very archaic, but incredibly useful to an over-streched NHS, narrative that when we don't know what's going on with patients we can easily put it down to anxiety and depression (like those are also symptoms where patients are supported, hey?). Given how much medical misogyny has historically harmed women, I find it hard to swallow that a woman would feed into such concepts without adding any nuance to it.
Tik Tok tics for instance. The author puts it down to teens being anxious. Yet, GOSH (https://www.gosh.nhs.uk/wards-and-dep...) found that a lot of those people were then diagnosed to be neurodivergent. Many neurodivergent people stim and copy others. But according to this book you'll just leave thinking 'man, people are so desperate for attention for their anxiety that they'll make themselves look ill!'.
It is worrying that this book feeds into the 'just anxious patient' narrative seems to have been replaced with 'anxious, but not their fault - they're so unaware of it poor things!' - and that this is almost presented as progress. And of course it's impossible to fight against such an argument as doctors will say it only confirms what they already presume (i.e. that patients overthinking their symptoms and trying to find a cause is the root of their symptoms). It is an incredibly condescending approach to medicine AND it is wholly unscientific too. I'd have loved to hear more about how scientifically robust the studies on the nocebo effects are for instance (as many other study designs were meticulously broken down), and how this knowledge can be put into actual practice. There's a concern though that the more recent studies on nocebo effect, how much the brain can trigger pain signals etc. have translated, well, are stretched, to fit a narrative where doctors put a lot of the onus on subconscious responses and end up denying access to care to patients they deem too complex or too irrational. Where do we find a balance then? And why is this book completely ignoring this point? For more info on the complexity between body and mind I'd recommend the book 'It's All In Your Body' as it explores the dual connections between body and mind - as opposed to the overbearing 'it's all in your mind' (yes, that's why the title is so black and white!).
Let's go back to neurodivergence for a second. Deborah Cohen makes claims not backed by most studies, especially when it comes to the idea that 'many' people grow out of their ADHD. Most scientific studies have actually found that most people (usually around 60%) with ADHD do not grow out of it. But her claim is used to back up the fact that folks are over-diagnosed.
Over-diagnosed btw? Maybe this book should have touched on how the idea of people getting diagnosed is very inconvenient for both policy-makers and the NHS. Imagine having to support people properly through Access To Work and support with real NHS pathways that deal with more that only medication? Imagine the money spent? Better tell patients to chill the fuck out and deal with very normal behaviours that every human has (it's a spectrum folks, just go to sleep). It's not like many studies showed early diagnosis is vital...
And yeah over diagnosis within the NHS let's talk about it more shall we? What about the plethora of diagnoses such as BPD, FND etc. (Dr O'Sullivan is a champion here, it's easier when the narrative is that people need to go away and deal with anxiety)? What about women being ignored for symptoms most men receive immediate supervision for? How can this book adopt very narrow views without looking at the overraching diagnosis system is beyond me.
This book should have touched upon how, based on what they're exposed to, both patients and doctors should try and work as a team. Otherwise it all feels very much like denouncing a problem and making patients the weak voice in the conversation. But it all reads very much like the author wants to comfort doctors in the knowledge that they're the voice of reason and... that's pretty much it.
This book should have also touched on the sensitive nature of scientific studies. If you don't ask certain questions or rather ask particular questions a certain way you can get the answers you sometimes want. Again, it felt like the author showed and shared what was convenient to make doctors feel safe in their usual 'Keep calm and carry on'.
Maybe the losers here are the patients. Stuck between predatory companies and (too often) gaslighting doctors. Maybe the losers are the patients who stop seeking answers. And show up to A&E months or years later. And the patients who keep seeking answers too. Because no one will listen. And they fall into the wrong hands. Or the patients with social issues (homelessness, DV, etc.) or issues like chronic pain who get booted out of the NHS and keep being told to see their GP only to fall between the cracks.
Maybe the issue here is that patients already have so little credibility when they enter the room. And they might have even less if doctors use this book to simply jump to the conclusion that they should stay simply away from the internet and stop diagnosing themselves on the internet.
At a time when resources and time are so incredibly limited, let's not forget some doctors will end up getting stuck (consciously or unconsciously) into a hierarchy of access (only treating people you deem the worst to protect resources) and this book can help with just that. Let's remember the NHS was supposed to be free for all. And all means all.
I selected this book the moment I read the title. Even the blurb had me convinced it would be worth my time. I know the social media health world runs on stories and big emotions, not good research. So I was ready to dig in.
The author and I do not share a worldview. I am an American nurse and patient advocate. I believe every person is the CEO of their own health. They are responsible for building their care team, learning about their condition, and making their own decisions. I also value free speech and individual autonomy. The author writes from a UK, socialized medicine perspective. She believes government needs to control healthcare access and information because the average person might not choose wisely.
Most of my disagreements with this book trace back to that difference.
The author identifies real problems – the lack of nuance on social media, clicks driven by big transformations instead of balanced education, risks buried under inspiring stories. I agree with the problems. I disagree with her solutions. Over and over, her answer was more government involvement.
Take elective testing as an example. I teach my podcast listeners how to interpret their own labs and how to access testing outside their doctor or insurance when needed. Patient autonomy matters. Doctors are often hampered by insurance companies. Patients need options to fill the gap. The author sees that as a burden on the system. I see it as people advocating for themselves.
Her research was solid. The issues she raised are real. But free speech and patient/medial autonomy are not the problems here. More education is a better answer than restricting either free speech or autonomy.
Really interesting, I’m afraid people who need to read it probably won’t.
I like how nuanced it is. Social media is not all bad, it can give people community or answers to people who feel failed by medicine. That being said social media is not where you will find the most accurate information. Most people are here to sell something (let’s be real), social media is also the place where actual science goes to die and personal anecdotes thrive.
It’s terrible (and I love that the author acknowledges that) that people who are being failed by the medical establishment are targets of people trying to make money. Social media and the art of influencing makes it so easy.
DNF at 100 pages. Just couldn’t get into it, often found it unnecessarily detailed on some studies that felt tangentially relevant, and then their linking explanation to the topic at hand was limited. Shame as I really wanted to enjoy this as it’s a fascinating topic!
Got a bit boring toward the last third, but it was well researched. Good for reading if you've not already been exposed to the scamminess of it all that comes from social media via other sources (podcasts on the topic etc).