Misinformation

I'm using my blog to talk about an issue that I've almost got myself involved in a Twitter argument for because it takes more than a couple of lines of characters to explain.

On the surface, the 'argument' was on the safety of a particular site. However, my reaction is nothing to do with that. To those involved: hold fire until you've read this whole blog.

We live in a world where we're bombarded with information and it's very difficult to tell what's true fact, what's low quality and what's misinformation.

I've been passionate about this for years. Many people don't know that I used to be a science teacher. As much as I loved teaching about the fundamental particles and cosmology, I was much more interested that the students I taught ended up scientifically literate. To me, this means being able to use the basic skills of the scientist to sift through data and make informed decisions.

At the time I was teaching (and, depressingly, still), the three big 'debates' in the world were whether vaccines cause autism (spoiler: they don't), mobile phones cause cancer (nope) and whether humans are the cause for current changes in climate (they are).

How can I be sure? Because there are literally thousands of articles written in high quality peer-reviewed journals, based on double-blind trials, high quality statistical models or established science that show that these things are true.

Now, science does work by every now and then someone coming along and finding an exception to the rule, or developing a new paradigm that changes everything. However, these are few and far between, especially when a particular area of science is well understood. To change what mainstream scientists believe requires three things: evidence of the new claim that can be verified independently; an explanation for the new claim using established scientific principles; ways of further testing the claim.

In the case of vaccines and autism, only one study was found to link the vaccines with autism. Other studies showed no link. The study also made no attempt to explain how the chemicals in vaccines could cause autism and no further predictions for relationships that could be found outside the study. Worse, the study was found to have been conducted by a doctor who was being paid to write a study with a particular bent, and was conducted under incredibly unethical conditions.

So what's this all to do with sites on the internet?

Let's roll back a couple of weeks when I found myself emboiled in a Facebook debate about PrEP.

For those who don't know, PrEP (Pre-Exposure Prophylaxis) is a way of preventing HIV from being passed on by taking an anti-retroviral drug even if you're HIV negative.

There have been many studies done on the efficacy of PrEP and it's been found to be a) highly effective and b) safe for most people. There is, however, a small risk that it may affect your liver or kidney function. As such, people who have been prescribed PrEP are given regular tests to check that their vital organs are not being affected by the drug.

Of course, the Facebook warriors decided this wasn't the case. They were shouting about the 'dangers' of PrEP. If people believe that, it's fine, that's their choice. But not if it puts other people who could be at risk off using the drug.

When I challenged those making claims to provide evidence for the assertions, all I got back were anecdotes along the lines of "My doctor won't prescribe it because they're scared" or worse "you're such a sheeple". Of course, in America, there's an added complication that healthcare is a profit making business. This means that there's a suspicion about every drug that's out there. Luckily, in the UK, the NHS is not profit making and can be usually be relied on to make much more informed decisions. In the case of PrEP, they tried very hard to find reasons not to prescribe it, but have recently come to the conclusion that it's much more cost effective to give people the drug than the potential consequences of at risk groups not taking it. They also looked at the effectiveness compared to the side effects.

The point here is that "A guy off Facebook who knows a doctor" is nowhere near as reliable a source as the UK health regulator, but the guy off Facebook could stop someone making an informed decision by spreading half truths and doubt.

So what triggered this blog? Someone I follow on Twitter tweeted a "warning" about a particular site. This warning linked to an article written in a really obscure online "newspaper" in barely understandable English. The article made half a claim in the headline, then completely failed to explain the basis for the claim in the main body of the text. They claimed to be using a source "who worked for the company" but there was no evidence of this. There was a picture attached the article that doesn't have anything to do with the site mentioned.

On questioning this, I was given the usual "There's loads of people complaining on the web about this site". So I went looking. Trustpilot is a site where people can rate sites. A really good indication that something fishy going on is reading the number of 5 star or 1 star reviews. If there's a clutch in a particular time frame, this can suggest that someone is trying to manipulate the reviews. In this case, the site being criticised had a number of poor reviews written fairly recently. There wasn't a common thread to the reviews, either. Some of them were clearly sour grapes, whist some were nothing to do with the site functionality, but the content on the site (which is like complaining that YouTube is rubbish because PewDePee said something bad - it's creator led).

I'm open to the fact that some sites are dodgy, that science can get things wrong and that 'Big Pharma' makes up conditions in order to persuade us to buy medicines that we didn't know we needed. However, I do not agree with spreading misinformation. At best, it can spread confusion. At worst, it can cause people to behave in ways that are detrimental to their health, to the environment, or cause problems for legitimate businesses. So please only share high quality sources.

If you're in doubt about whether to believe something written on line, use the following guide to work out whether you should be taking notice of the information.

Reputation Is the author or organisation who wrote the source of information knowin to be honest, competent and neutral? Do they have integrity?

Ability to see Does the author have first hand knowledge of the subject, or are they rehashing second hand data?

Vested interest Does the author gain financially from writing this? Who is paying them? What are they trying to gain?

Expertise Is the author an expert in their field? What qualifications do they have?

Neutrality? Is the source biased? Are they ignoring one side of an argument? Has the 'opposite side' been given an opportunity do respond?

In the case of the information shared regarding the site, I felt that the reputation of the source was low, there was an anonymous informant who was the source, and there was no right to reply in the article for the site. Finally, given the number of articles attacking the same site in the 'newspaper', the neutrality of the source has to be questioned.

The internet is a great place, and there's loadsd of information out there... but please don't spread misinformation. Please be especially careful when you share stories that could damage people, businesses or go against the grain on health or the environment. Think carefully about the reliability of the source before hitting share, like or acting on the information.