In the modern online world, it isn’t just fake news we have to worry about, but also the scourge of what many view as ‘bad science’.
You’ve probably seen those adverts online that say something along the lines of, ‘Take this pill and you can shed weight in months!’ or ‘This device will bring your vitality back in no time!’
While these are some very obvious examples of dubious claims, there are hundreds and thousands of more subtle and, frankly, more nefarious ones that spread what is essentially ‘fake news’.
But surely, I hear you ask, peer-reviewed science is out there for us all to see, judging these claims on their merit? Not exactly.
One of those fighting for greater transparency is Síle Lane, head of international campaigns and policy at the non-profit group Sense about Science. She was in Ireland last December as a speaker at the Science Communications Conference.
Founded in the UK in 2002, Sense about Science attempts to correct the misrepresentation of science in public life. Last year, it marked the opening of its first office in Ireland, attempting to give young Irish scientists a voice. It is set to host its first Standing Up for Science workshop in the country on 8 February.
An ‘utterly outrageous’ situation
As a key member of both its Irish and Brussels office, Lane is now tasked with keeping tabs on how the EU – and Britain in a post-Brexit world – adopts to the changing winds of clinical trials.
Speaking with Siliconrepublic.com, Lane reveals the “utterly outrageous” current situation, where half of all clinical trial results in the EU that led to medicines being made available to the public were never released.
This, she said, is an enormous amount of information that consumers of that medication and researchers working in the pharmaceutical area would be very keen to know.
In fact, research conducted by another organisation calling for clinical transparency offered a more astounding number in the analysis of trials conducted in the UK.
Of 3,540 trials clinical trials conducted at 16 top universities in the country, only 206 appeared to have any readable outcome. As for the rest, the study’s authors said they were simply “difficult or impossible to find”.
The cost of a lack of knowledge
These types of statistics are only further compounded by the fact that other research into the effectiveness of cancer medication sold in the EU market found that 60pc show no life-extension benefits whatsoever, despite claims to the contrary.
“We can’t even be sure we have all the information there because so much clinical trials data isn’t being published, so researchers can’t get a hold of it,” Lane said. She added that “doctors can’t be sure that there aren’t gaps in the evidence base for medicines that they’re prescribing”, potentially causing harm to patients.
Our natural inclination is to try and point fingers and ask how such a situation could have arisen, especially given the fact that people’s lives may be at stake in the long term.
Could it be the fault of massive pharma companies keen to keep their powerful formulae a secret from competitors? Or is it down to researchers – often left struggling for funding – who are forced to move on to the next project to provide them with a livelihood?
However, it isn’t so simple, according to Lane, as much of the blame can be found with both parties.
Still, both can redeem themselves and be part of the solution, particularly the latter, as many major corporations are being brought to task over their lax efforts to publish some data.
“There could be pressure [among researchers] to move on to the next thing if something shows ‘interesting results’,” she said. “It’s human nature to shove it into the bottom drawer and move on to something that might be more interesting to work on.”
She continued: “There’s all sorts of reasons leading to one big gap [in clinical trial data]. There isn’t some giant lever to make it all suddenly available.”
But there could be multiple levers to help pull them in the right direction, resulting in more data being made available in a quick and efficient manner.
Efforts to close the gap
Something that is helping to shine attention on both academics and pharma companies is a recently launched tool called Trials Tracker. It was developed by an interdisciplinary team of coders and public health experts from the University of Oxford to give a transparent list of the clinical data that has been made available, and where it’s being hidden.
Our new tracker – monitor compliance with FDA Amendment Act trial reporting requirements, as soon as the first trials become due in Feb 2018 https://t.co/6arce1Wxx0
— EBM DataLab (@EBMDataLab) January 18, 2018
But, aside from that, the biggest changes by a considerable distance are coming into force on both sides of the Atlantic, with 17 February marking the date when all trials conducted in the US must report results to the Federal Drug Administration (FDA) and the public.
In addition, by next year, any clinical trials conducted in the EU will have to comply with its Clinical Trial Regulation, which makes it mandatory for those conducting trials to follow a set of consistent rules in all member states. Crucially, it stipulates that all conduct and results will be made publicly available.
Cause for optimism?
Its introduction is welcome news for Lane and others like her whose job is to get the information out there.
“[The regulation] will do a whole lot more to allow scrutiny, proper investigations and questioning of results of clinical research in the EU.
“The EU will be leading the world when it comes in, as it’s the strongest, most transparent medicines regulation law anywhere … it’s ahead of the FDA’s laws in the US.”
In an ideal world, everyone would be spending time to search through peer-reviewed research to see that the medication they are taking does what it claims it does.
This isn’t realistic, according to Lane. However, at the same time, she believes that a number of researchers are too quick to dismiss the appetite for information from the wider public.
“A lot of people don’t trust the public with more information, but I think we have more confidence in the public than many organisations we work with,” she said.
“It’s not like every single member of the population is going to be reading peer-reviewed papers one evening, there’s no way. But there will be people who, at some point in their lives, finally do want to know a bit more … and will put effort into finding it out.”