We’ve never been in a position as a population where we’ve had more information at our fingertips. If you want to know something, whether it’s the latest health food advice or treatment options for a certain cancer, you can type that into Google and viola: all the answers you could possibly wish for. But how much of this information is accurate?
I scroll through Facebook at least once a day (or maybe more than once…) and rarely does a day go by without seeing someone sharing some form of misinformation about healthcare related things, and more often than not its something harmless.
However, sometimes it’s not harmless; the anti-vaccination squad have got a ginormous platform on social media to spread misinformation, misinterpretation of research and some outright lies to millions of people all around the world, and they’re free in the eyes of the law to talk about this through their freedom of speech. In 2018, there have been 913 confirmed cases of measles in the UK, up from 259 last year, all because children are not being vaccinated due to media reports of unrealistic dangers (Public Health England, 2018).
Gone are the days of doctor knows best and now we have a whole army of people who have researched their conditions and medication within an inch of its life. Most of the time, this is fabulous; the current guidelines in healthcare are for a patient-centred approach which involves ensuring the patient has as much information as possible so that they can be part of making decisions about their care. It’s when this information is pocketed or made up completely of misinformation that things go south. Some patients can be so convinced of a certain diagnosis or treatment that they then fail to take into consideration anything else provided to them, often at their detriment (Michael, 2010).
When science gets it wrong
When over 1 million articles related to human healthcare are added to PubMed every year, on top of the 17 million already out there, it’s not surprising that sometimes the science gets it wrong (Ioannidis et al., 2017). One of the more notorious cases if that of Andrew Wakefield, who was famously struck from the UK medical register for doing unethical research on children and then writing an article about a fabricated link between the MMR vaccine and autism, among other things. The media quickly latched onto this “research” before anyone had a chance to try and replicate it, spreading this misinformation further afield, to where we still have a serious decline in vaccine uptake. Despite the article being retracted from the Lancet, Wakefield being done for fraud and the huge amount of research that has been done since to contradict his claims, this idea continues to circulate in the media and Wakefield makes a huge amount of money in the states giving talks (Rao and Andrade, 2011).
In this case, despite efforts of the scientific community to rectify the information picked up by the media, this misinformation still exists. While scientists have a duty to ensure that their research meets all the ethical standards, this sometimes doesn’t work if the media are quicker.
The problem with scientific research
Assuming the science meets ethical guidelines and isn’t fraudulent in any way, there should be no problem. The issue lies in the specificity of academic articles – the information given in them is often only applicable within a certain context and is rarely useful to the public on its own.
I Googled ‘red wine cures cancer daily mail’* and got over 18 million hits – I picked one article, a lovely one called “How Rioja may prevent cancer: Antioxidant in red wine halts the protein that causes tumors, study finds”. So off we go to find this article, with the snappy title: “Resveratrol prevents p53 aggregation in vitro and in breast cancer cells”, and we’ll have a look.
The antioxidant in question is resveratrol, a polyphenol found in grapes, berries and peanuts; it is only synthesised in these plants when they’re under stress such as an infection and comes in two stereoisomers (explanation here), only one of which is active in the way they’re interest in (Langcake and Pryce, 1976; Ferraz da Costa et al., 2012). In this study the antioxidant was used to treat three different breast cancer cell lines and some mice implanted with one of the cell lines; the results showed that it did what they hypothesised (Ferraz da Costa et al., 2018).
However, just because a study using shows that this antioxidant works, this doesn’t mean the results can be extrapolated up into real world benefit. Yet at least. This study also only focuses on the p53 tumour suppressor gene, which while it’s the most commonly mutated gene, only accounts for up to 50% of cancer mutations (Olivier, Hollstein and Hainaut, 2010; Muller and Vousden, 2014). The study clearly shows an area of potential research for the future, but not anything near “red wine kills cancer”.
So, it’s taken me 35 minutes, including a coffee and cheesecake break, to write this section, why can’t the media do this too? Mainly, because unless you have lots of exposure to scientific literature, it’s impossible to read and then it’s easy to grasp onto the bits that you do understand, often losing much of the context.
Freedom of Speech
Being able to speak your mind without fear of persecution is one of the major perks of the 21st century, however this does also mean that anyone can start up a blog and type away whatever they fancy. In most cases, this is brilliant, there are hundred of wonderful blogs run by doctors, scientists and other sciency people who help disseminate useful and interesting information. On the flip side, it also means that quacks and conmen can preach about whatever else they fancy at the detriment of their followers.
I was recently directed to a ‘science’ podcast that contained lots of ‘sciency facts’ about the oral contraceptive pill. The chaps running it had clearly spent a lot of time covering all the bases and doing loads of research, accessing a number of different journals and searching for meaningful statistics. But again, we run into the ground where the ‘meaningful statistics’ they found were grossly out of context; they made a vast number of sweeping statements about the pill based on some dodgy figures. They didn’t publish their list of resources, but I went on a hunt – one statement was: “women who used the oral contraceptive pill for more than 6 years were 1.5 times more likely to get breast cancer”. Now this is scary, and rightfully so. However, the study itself was completed in Indonesia in six hospitals, including 762 participants, 381 of which had breast cancer. The statistic they used in the podcast was accurate but considering there were over 55,000 breast cancer cases in the UK in 2015 and only 381 people in the study, this would only account for 0.7% of cases (Cancer Research UK, 2018). They also only looked at women who had been admitted to hospital with cancer and didn’t consider the number of women in total on the pill. We also need to bare in mind the difference between Indonesia and the UK (Wahidin, Djuwita and Adisasmita, 2018).
How to identify misinformation
- Crazy statistics
- If it sounds too good to be true
- They’re twisting information to sell you something
- Recommendations for quick fixes
- Lists of ‘good’ and ‘bad’ things
- No reference lists
- Statements about research being “underway”
- Simple conclusions from complicated research
If you’re going straight to academic journals: where was the study done? How many people were in it? Did they control for other variables? Have they acknowledged other variables? Were they paid lots of money to do it?
Who should we be getting information from?
In general, there’s no reason to believe that any information is unreliable, but some sources are 100% better than others. Organisations such as Cochrane are designed to put together and evaluate all of the latest research on a given subject and they write an academic paper based on this – they also include a plain language summary.
Also bare in mind that anyone can call themselves an expert in something, and they might just be, but the real test is whether or not they’re a registered professional; these people have gone through approved courses that measure competence and are then governed by regulatory bodies.
National – NHS, National Institute of Clinical Excellence Guidelines, Cochrane Collaboration, websites dedicated to a specific disease eg. Diabetes UK
Healthcare – doctors, dentists, physiotherapists, pharmacists, nurses, paramedics, dental nurses, opticians
Diet – Dieticians
Misinformation is now so pervasive that you can’t avoid it. Nurses need to remain vigilant and develop the skills necessary to recognise poor medical advice so that we
A. not spread it ourselves, and
B. can help our patients understand it
Part of the issue is that when we see some item of news or information we have no reason to believe that its not accurate, especially if it’s displayed in a way we’d expect legitimate information to be displayed. It’s often not the fault of that person on Facebook for sharing something, how do they know it’s not true? Should we have to research every single fact you see online? I know very few people who have time for this. The crux of the issue lies in those who are initially seeking the facts and sharing them, often sensationalising them along the way. It’s up to the individual relaying that information to check it’s correct, and when it comes to scientific research, the mother of all medicine, how many of these individuals can actually read it accurately?
Within healthcare, unless there’s some crazy stamp down on freedom of speech as a whole, this misinformation is always going to exist. In the nursing role, its about challenging all of the evidence and only using advice that comes from a reputable sources. When it comes to patients, it may be a case of diplomatically steering them towards this evidence and advising them to have a discussion with their consultant or GP, so that they can make a true information decision about their healthcare.
* I’ve picked the Daily Mail just because I needed to pick an example newspaper and don’t have the time or inclination to look at them all.
Cancer Research UK (2018) Breast cancer statistics. Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/breast-cancer (Accessed: 18 December 2018).
Ferraz da Costa, D. C. et al. (2012) ‘Transient Transfection of a Wild-Type p53 Gene Triggers Resveratrol-Induced Apoptosis in Cancer Cells’, PLoS ONE. Edited by W. Debinski, 7(11), p. e48746. doi: 10.1371/journal.pone.0048746.
Ferraz da Costa, D. C. et al. (2018) ‘Resveratrol prevents p53 aggregation in vitro and in breast cancer cells.’, Oncotarget, 9(49), pp. 29112–29122. doi: 10.18632/oncotarget.25631.
Ioannidis, J. P. A. et al. (2017) ‘How to survive the medical misinformation mess’, European Journal of Clinical Investigation, 47(11), pp. 795–802. doi: 10.1111/eci.12834.
Langcake, P. and Pryce, R. J. (1976) ‘The production of resveratrol by Vitis vinifera and other members of the Vitaceae as a response to infection or injury’, Physiological Plant Pathology, 9(1), pp. 77–86. doi: 10.1016/0048-4059(76)90077-1.
Michael, S. (2010) The Know-It-All Patient, Physician Practice. Available at: http://www.physicianspractice.com/operations/know-it-all-patient (Accessed: 18 December 2018).
Muller, P. A. J. and Vousden, K. H. (2014) ‘Mutant p53 in cancer: new functions and therapeutic opportunities.’, Cancer cell, 25(3), pp. 304–17. doi: 10.1016/j.ccr.2014.01.021.
Olivier, M., Hollstein, M. and Hainaut, P. (2010) ‘TP53 mutations in human cancers: origins, consequences, and clinical use.’, Cold Spring Harbor perspectives in biology, 2(1), p. a001008. doi: 10.1101/cshperspect.a001008.
Public Health England (2018) Measles outbreaks across England. Available at: https://www.gov.uk/government/news/measles-outbreaks-across-england (Accessed: 18 December 2018).
Rao, T. S. S. and Andrade, C. (2011) ‘The MMR vaccine and autism: Sensation, refutation, retraction, and fraud.’, Indian journal of psychiatry, 53(2), pp. 95–6. doi: 10.4103/0019-5545.82529.
Wahidin, M., Djuwita, R. and Adisasmita, A. (2018) ‘Oral Contraceptive and Breast Cancer Risks: a Case Control Study in Six Referral Hospitals in Indonesia’, Asian Pacific Journal of Cancer Prevention, 19(8), pp. 2199–2203. doi: 10.22034/APJCP.2018.19.8.2199.