** For the purposes of anonymity, confidentiality and comfortableness of my interviewees, this interview has been fictionalised – no one real-life doctor corresponds to one character (Tamsin, Ben, Nafisa and Jacob) in the following piece. Rather, it is an amalgamation of views and statements from a number of healthcare professionals along with my own perceptions and ideas**
Power structures in hospitals have evolved massively over the past century. During the "golden age of bacteriology" science and technology triumphed, with doctors largely being seen as paternalistic benefactors. However, with the rise of technology, also came the internet - enter Dr Google. While Dr Google has provided lay people with more knowledge, awareness and control over their health, it has also changed the patient-doctor dynamic irreversibly. Where citizens used to be largely subservient to their doctors, increasingly, citizens are demanding medications, treatments, and procedures, frequently based on misinformation. I was curious to learn how health professionals feel about this changing power dynamic.
“The power structures have massively shifted" said Tamsin, "there used to be a very patriarchal relationship. The doctor would say this is what is wrong, and this is what you need to do, and the patient would respond with “yes doctor” and did what they were told - it was not a two-way conversation". Ben agreed saying that: "Healthcare nowadays in the UK is not what it used to be at any stretch. " Ben said that a lot of older citizens still abide by the previous power dynamic, however, that "a lot of the younger generation seem to think they have a strong sense of what is going on and what treatment they need.".
Jacob developed: “Often patients will read something and apply what they have read to themselves but will do so inappropriately. A classic example is antibiotics - patients will come in and demand them. However, what patients often forget or don't know is that doctors have a responsibility to the patient population, to be aware of resources and costs, and generally look beyond individual patients such to be aware of antibiotic resistance. It is definitely good that patients have a more active role in their healthcare - I am very passionate about patient-centred healthcare and shared management plans, but we have been trained for a reason and we have the expertise that the patient doesn’t necessarily have to know when a medication is appropriate or not. That is important and often forgotten“.
Upon asking whether a patient’s desire for more information and reassurance ever backfires, Nafisa said that a common example of this is when someone comes in with a headache and they think they have a brain tumour: "I will examine them, take a family history and can be fairly confident that they don’t have a brain tumour. I can’t know for sure obviously, but, as a doctor, that’s an uncertainty I am willing to live with based on my assessment."
Nafisa explained that the issue arises when patients insist on a scan or a concrete test as they can’t live with not knowing for sure. As people outside of the professional medical world, often we perceive investigations as only being beneficial: they can unearth problems which can be treated and then we can go on living healthy lives. However, what is often forgotten is that there are also risks attached to some investigations - for example the PSA-test for prostate cancer can often result in false positives and can lead to rather uncomfortable further tests. Remarkably less known is the chance of incidental findings - finding something that isn’t related to the problem but is significant enough that it can’t be ignored.
Nafisa gave me the example of incidentally finding an aneurysm through a brain scan: “The thing with aneurysms is that, often they are fatal as they could burst at any time, however, they might actually also never cause the patient a problem. That puts everyone in such a difficult situation because now you have to decide whether or not to treat it.” This reminded me of the book ‘Do No Harm’ by Dr Henry Marsh where he spoke about the risk of doing surgery on a potentially harmless aneurysm. He posed questions such as: is it worth it to do really dangerous surgery that has its own huge list of risks attached to it on something that may end up never causing the patient a problem? And, how do you tell a patient they have a time bomb in their head that might never cause them a problem, but if they undergo surgery to remove it, they may die? He made the point that when it comes to neurosurgery, a notoriously high-risk speciality, the best surgeons are not those operate all the time, but actually, know when not to.
Hearing Nafisa tell me that a lot of patients’ persistence for more information often stems from misinformation, I explored the role of the internet on health with a 21-year-old woman who said she "always googles" and "mainly as an attempt to reassure [herself] so [she] knows what the possibilities are. But, it never normally helps”.
In relation to this, I discussed the interrelationship between health anxiety and Dr Google with Ben and asked whether he ever sees patients who suffer from health anxiety: “Health anxiety is a very real thing. Occasionally we have patients who will stop taking medication because of their fear of the side effects - that is really worrying for us“. It is clear then that the patient’s insistence for more information and investigations is intimately linked to Dr Google and, perhaps there is also a link between health anxiety and Dr Google. A 2019 report by The Telegraph revealed that 7 per-cent of Google’s daily searches were health-related, equivalent to 70,000 every minute. “Dr Google, why do I have a headache?”, “This could be a sign of a brain tumour. Seek medical attention urgently.” The moral of the story here is that more information is not always good, and to quote Alexander Pope: “a little learning is a dangerous thing”.
The issue of misinformation is especially relevant speaking in the context of the COVID-19 pandemic. In August 2020, the World Health Organisation (WHO) published an article about the “infodemic” that was, just like the virus, “highly contagious and growing exponentially”. The abundance of misinformation led to the creation of the 1st Infodemiology conference from June-July 2020 which was headed by physicists, mathematicians, social scientists, and epidemiologists. While the dissipation of misinformation is concomitant with every epidemic and disease, the spread attached to COVID-19 has mirrored the spread of the disease – global. Aided by increased social media and communication routes, a plague of inaccurate health information and advice has travelled around the world, and in some places, has caused serious health ramifications.
Harking back to the beginning of the pandemic, there were rumours of impending food scarcity, which subsequently caused many to stockpile supplies – back in mid-march of 2020 I was asked whether I had done my “apocalyptic shop” yet by one of my friends. Ironically, this sort of behaviour actually went on to cause shortages. It seemed to have slipped most of our minds that not everyone has the luxury of self-isolation and social distancing to protect their health. Rather, some people are forced to continue working in unsafe conditions to produce goods for the rest of the population – even at the expense of their own health.
Additionally, in the Islamic Republic of Iran, hundreds died after ingesting methanol alcohol which was advertised on social media as being a cure for coronavirus. While the consumption of illicit alcohol in Iran has been a long-standing health problem and cause of death, the total number of deaths from February to April 2020 due to methanol poisoning was almost eight times higher than the corresponding number of confirmed deaths for the same time period in 2019. And, lest we not forget the conspiracy theory video ‘Plandemic’ that accused Dr Anthony Fauci, the USA’s lead epidemiologist, of manufacturing the virus and sending it to China as a form of biological warfare. This video was watched by more than 8 million people before being taken down; however, most of the damage had already been done, with many having lost part of their trust in public health organisations and official advice.
In the face of this, the UN and the WHO have been remarkably proactive in fighting the spread of the ‘infodemic’, setting up pages such as ‘VERIFIED’ (https://shareverified.com/en) and a page dedicated to ‘myth-busting’ (https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public/myth-busters). Additionally, the WHO are working with over 50 digital companies and social media platforms such as TikTok, Google, Viber, Facebook, YouTube and WhatsApp to halt the spread of misinformation. They have also partnered with an analytics company to take part in “social listening” such to gauge the extent and type of rumours and fake news that is beginning to circulate, subsequently aiming to mitigate further spread of this misinformation.
However, both in the context of COVID-19 and outside of this, it is also important to recognise that under-information can cause significant problems. Tamsin used her rural location and the underdiagnosis of HIV as an illustration of this: “We don’t test for HIV nearly enough. It's just not very common [here] so people don’t think about it. “ This reminded me of Ireland where cases of HIV are higher than the rest of the UK. The BBC published an article whereby they cited the main reason for this being that sexual health education is outdated so there simply isn’t enough information and subsequent awareness about the causes, risks and prophylactics for HIV. Talking to Tamsin and researching HIV in Ireland made me question whether I had ever been taught and made aware of HIV through my attendance of PSHE classes in school. I realised that I hadn’t. In relation to HIV/AIDS, many still believe the rumours that it is a ‘gay or black’ disease, and thus as white heterosexuals assume that they have natural immunity. This is a prime example of how both under- and mis-information can work symbiotically to cause delayed diagnosis and increased fatalities.
Hence, the infamous saying ‘everything in moderation’ fits perfectly here. Whilst, more awareness and information about illnesses such as HIV desperately needs to be made available, this needs to be achieved in a controlled manner that doesn’t spark an increase in health anxiety and misinformation. Equally, more needs to be done to encourage and signpost people to informed and reliable sites such as the NHS and WHO websites. Many websites and their information available today is outdated and unreliable, based on studies and trials conducted years ago that have since been disproven, changed or still under research. As stated by the British National Formulary, a good rule of thumb to go by is that information produced more than four years ago should be taken with caution, especially if it is relating to certain medications, in which case it should be updated more frequently than this.
Lastly, anyone can post information on the internet and the order of results displayed are not filtered by experts but rather by brainless- software. Hence, it is important to remember why, when and who upon selecting sites for health-related information. Many websites aim to sell products and medications so information may be biased, and healthcare consequently becomes a commodity sold to those who can afford it. Typically, the best sites to use are The British National Formulary, NHS choices, Patient.co.uk, Net Doctor, and the WHO. As someone who has a brain tumour every time she has a headache or MS every time she feels tingling in her toes, I cannot champion this enough.
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