|28th March 2019
In an era where ‘fake news’ has become a trending phrase used by political leaders – from Trump and Putin to UK members of parliament – it feels as if we’re all questioning what’s real and what’s distortion on a global scale. However, for many members of the public it has always been taken for granted that science and medicine are studies based on evidence and truth.
This belief is also extended to the reporting of science in the media, with many thinking: ‘if the scientific papers are based on evidence, then the articles in newspapers must be true – the facts are right there.’ So, what happens when scientific reporting becomes inaccurate and how does this impact patients and healthcare professionals?
The progress of science gives us many societal benefits, both within and outside of healthcare. Keeping the public informed of scientific developments is integral to enabling scientific innovation and for allowing the public to fully benefit from these advances. Not only that, but accurate and effective scientific communication to the public empowers them to act on this knowledge and regulates expectations – for example reducing water waste to combat climate change or modulating use of antibiotics to protect their effects for the future. Despite this, we are experiencing an era of inaccurate scientific reporting in mainstream-media.
With the advent of the internet and the popularity of new websites, the public expects information instantly. In the past printed newspapers would have a slower turnaround time from researching a story to going to print. Editors would also only have to compete with other newspapers or magazines distributed in the local area. Now, every media outlet is rushing to get their story out first and journalists are competing with global media operating 24-hours a day. They are shouting into the noise and the best way to compete is to get the story out first. However, it seems a growing number of outlets are sacrificing fact-checking in a bid for clicks.
"Once you’ve explained the science, there is still a big burden on that patient – what source do they believe?"
An article published in March 2019 by ‘The Telegraph’ titled: ‘Gene editing could end HIV, scientists hope, after second patient is ‘cured’ using rare mutation’, provides a perfect example of misreporting scientific facts. After reading this headline, it’s easy to assume that some form of gene editing has led to a cure for HIV. However, if you were to read the accelerated preview in Nature you would see that the very first line of the abstract is “A cure for HIV-1 remains unattainable as only one case has been reported, a decade ago”. This is a clear divergence from the claim in newspaper’s headline. Should you read on, you would also discover that gene-editing was in no way used in this treatment. The danger here is that the undiscerning public may take ‘The Telegraph’ at their word and begin a hopeful search for this new treatment, only to be knocked back by healthcare professionals. Healthcare professionals, on the other hand, will have to field hopeful patients, managing expectations and letting them down gently.
An article published just three days later, again from ‘The Telegraph’ , plays on the growing threat of Alzheimer’s. The article is entitled ‘Alzheimer’s disease can be spotted through simple eye test’ and whilst this article is based on genuine research, it is far too early to be making sweeping statements. Being a cross-sectional study, the comparisons between the eyes of those with Alzheimer’s and those without were taken at a single time-point. This means it can’t currently be stated that retinal changes had occurred before or after the participants Alzheimer’s diagnosis. Unfortunately, and probably not deliberately, ‘The Telegraph’ failed to mention this aspect of the research. As a result, the public was misinformed about a very serious and prevalent disease, throwing expectations out of line with reality.
Click-bait titles have become much more common in-line with therise in popularity of social media and are being utilised by entities ranging from small online blogs to large media networks. As the pharmaceutical landscape becomes more complex and as personalised and precision medicines emerge, these stories are increasingly impacting patients and healthcare professionals.
Vicki Keisel, Genetic Counsellor and Director at GenehealthUK has seen the results of this first-hand, she explains: “Whenever things come out in the media, we see a flurry of questions and increased interest. It’s quite dangerous because often these headlines are not actually what the scientific papers have said.”
"Primary research papers and clinical trial reports are close to impenetrable"
This misreporting is not only worrying patients unnecessarily, it’s also taking up valuable time for healthcare professionals. “The media has a big responsibility to check what they’re putting out there,” she says. “It really is unhelpful if you see a headline with the wrong scientific information. Patients panic, and you have to individually explain why that headline isn’t correct. Once you’ve explained the science, there is still a big burden on that patient – what source do they believe? I’ve seen situations where they [the media] have picked out part of a paper and printed slightly different bits of it. They haven’t got the whole picture, so the message is very different to what the papers actually saying.”
To suggest the issue is one-dimensional would be naïve. Could it too be in part due to the data shared and presented by researchers and pharmaceutical companies lacks clarity? Unless you have a background in the field concerned, primary research papers and clinical trial reports are close to impenetrable. It is worth noting that some efforts have been made in the past to simplify how information is presented to patients, though on a relatively small scale and we could do more. The concept of the patient-friendly paper for instance, in which alternate versions of papers written in a style more readily digestible by the lay-person, could prevent the dilution of content from intermediaries bridging the gap between scientists and the public.
It’s important to also consider the role the public play in this narrative and how they can assist in bettering scientific communication themselves. There are resources available to help the public with distinguishing between the realities of scientific data and how it is presented in the media, not only fact-checker sites like the NHS, but organisations striving for enhanced public health literacy. Groups like this work to grow public engagement on a regional and community level. However, the uptake does not compare to the number of people reading the most popular newspapers.
Some investigation into the cognitive origins of readily believing misinformation have also been conducted. A 2014 study from Arizona State University found that when processing inaccuracies in information, previous exposure to inaccurate context predisposed participants to more readily accept misinformation. A later work by David Rapp – inspired by a rise in click-bait titles – explains that, even if we know better, the brain can still rely upon inaccurate information, especially if it was committed to memory more recently than factual information.
This is in part due to the brain often selecting inaccurate information and committing it to memory as it is easier than critically evaluating and analysing all the information presented. Rapp has outlined potential avenues to combat this cognitive function including questioning sources, critically evaluating information immediately and, most noteworthy, being wary of ‘truthly falsehoods’ – false information packaged within a truthful outer-coat.
Most of what we observe in mainstream media communication of science is akin to this. For example, the HIV article published by ‘The Telegraph’ discusses a treatment where positive steps have been made toward combatting HIV. The claims made within this context that are untrue, but they are much harder to detect because other information in the article is factual.
So, why is this all such a concern? False-reporting threatens the public’s trust in scientific research. For example, even subtly suggesting there will soon be a cure for HIV inflates expectations of current research. HIV currently affects 30 million people, misinformation promotes false-hope and leaves patients feeling soul-crushingly let-down, dashing hope.
Everyone has a part to play in solving this problem, including public, the media and the original publishers of scientific data. An effort should be made by all parties to encourage and educate the public, for media organisations to be better regulated and fact-checked, and for data publishers to try to provide more accessible information to both the media and public.
|27th August 2020
Precision and personalised medicines are more than products, they are services in their own right. So, how should pharma approach this uncharted territory to ensure targeted therapies work for patients?