Has misinformation only become a scourge of day to day life in this, the Internet, age. Sadly not. Like a well established disease, misinformation has been endemic for hundreds, if not thousands, of years. It lurks everywhere, not always apparent to the reader and even espousers.

It is just so much easier to spread in 2022!

At this exciting time in our disease history research, with treatment candidates knocking at the door, we must be on our guard.

Why do I care so much about misinformation?

Beyond the kaleidoscope of effects of misleading with effectively ‘bad’ science (accidental or otherwise) that can both frustrate and infuriate, I am concerned that valuable resources are wasted. Worst of all, I can easily conceive some aspects of misinformation ultimately delaying the eventual arrival of truly effective treatments for our community along the obvious effect of increasing patient burden in a disease that needs no assistance to be devastating.

To be clear, what is actually meant by ‘misinformation’? It’s important to state right off the bat as the word can imply, in an almost accusatory manner, that it is always a conscious and potentially deliberate act. But, far from it. Misinformation is simply…

False information that is spread, regardless of intent to spread.

In this, my latest devil is in the detail post I take a look at the phenomenon through the lens of press-releases versus scientific-papers as sources of information on our disease, ALS/MND. I include, alongside press-releases, social media writings with their vast reach and sound-bites.

Misinformation springs up anywhere and even scientists are not immune and can be unwitting spreaders. Largely, I suspect that this is the result of researcher naivety or inexperience on dealing with the media. Just being quoted incorrectly, or using the wrong words in an interview can mislead. Lets face it, it could happen to anyone. But it can be deliberate as well. I document a very famous and incredibly damaging example of scientist driven misinformation later in this post.

But let’s start at the very beginning, a very good place to start (according to Dame Julie Andrews!) as most misinformation is more subtle, and I am not ashamed to admit to becoming caught by some when I was first diagnosed.

What is ‘just not quite right’ with this fictional press headline? I’ll come back to it in a short while.

Promising drug may take 7 more years before reaching patients!

Knowledge of our disease and treatment research is critical for ALS/MND patients and particularly so for the newly diagnosed. After being hit by the proverbial steam-train diagnosis, many will plunge head first into a sea of never ending information in sheer desperation. In an attempt to find even the slightest sliver of hope, press-releases and more, freely and easily available on the internet, entice many out into the deeper open waters of confusion with just sight of such a headline.

Ideally, I would like no-one ever to head out into this rough sea but if they have done so, help them turn around as quickly as possible.

This is the somewhat completely unrealistic aim of this rather mind dump of a post! But here goes.

I hope to convince you that it’s best to

  • refer to the original and detailed scientific papers from reputable sources, especially when first diagnosed, and/or

  • refer or defer to a trusted source of information, such as your country’s ALS/MND Association(s). You can find your local association by visiting the International Alliance of ALS/MND Associations website, who united together have a shared mission, driven by the global voice of people living with ALS and their carers.

And of course, perhaps to think twice before sharing some content?

Back to the fictitious press-release title above that I created for this post.

Put yourself, for one moment, in the position of observing this dramatic proclamation on the internet, in a main stream newspaper or a TV news channel.

The very words of this headline play straight into our human emotions. The language weaves an unconscious bias that we all find hard to fight against. What do I mean?

What, perhaps, is your very first reaction to the headline?

Don’t hesitate now, just say out loud to yourself. I would hazard a bet it could be something like this?

  • “Why do regulators & governments take so long to approve effective drugs?”

I do actually have a lot of empathy for such an interpretation, but it is something we should strongly resist, at least until a deeper understanding of the reported situation is appreciated.

Such conclusions, along with the headline, sum up for me the essential difference between a press-release (or other source, eg social media sound bite) versus a scientific, peer reviewed/consensus driven paper and analysis. We immediately face being misled with potential bias. This particular example sows strong seeds with the following specific pre-conceptions:

  • That a drug/treatment referred to within the said article has been already proven effective and viable.
  • By inference, that regulatory bodies and other authorities are the problem.

This is a pretence that will bias the reader before reading and all from just a title, especially if the article is not read and simply the headline shared. This is how easy it is to create misinformation on almost any subject.

Scientific-papers are the exact opposite. Papers are peer reviewed, a complicated and time consuming process, even down to the titles and abstracts, to remove such bias.

As such, a typical scientific paper might be entitled as the rather boring…

A report on the Phase 3 trial results of Drug Candidate ABCDEF

This title has no bias in any way and explains exactly what the document is, and you would certainly have to actually read before making any conclusions.

We must never forget that a strong motivation for press-releases is often for companies / sponsors whose primary responsibility, rightly or wrongly, is to their shareholders / attracting investment and, more importantly, giving we patients, hope. And to be clear, the advocacy of hope is a laudable aim and we all need it.

But press-releases are not science, and social media comments even less so.

I will now list some common examples of misinformation (or more precisely conditions that can lead to) in any content,

Specific words and phrases

Two well used words that we all too frequently encounter are breakthrough and responder. Breakthrough might mean different things to the public and a scientist. To the public it often jumps out and shouts loud and clear

“there’s a treatment available! NOW!”

To a scientist, although it could mean the same, it more typically highlights that a new disease technical discovery has been made. It probably could be a real genuine game changing breakthrough, but not one whose finding might bring a treatment quickly, if at all.

Likewise, the term responder implies ‘effectiveness’ whereas in reality it is whatever it is defined as in a scientific-paper. It might just mean a change, but a change which is perhaps not clinically meaningful or indicative of significant treatment effectiveness.

And I almost don’t have to mention that social media has brought a whole new language and vocabulary. Overused superlatives abound. The following phrase, used by some, is actually just like Breakthrough in press-releases, but on steroids!

“This is HUGE!”

Omission of vital information

For example a drug hasn’t yet been tested in humans, or perhaps even animals and still an article might state an amazing breakthrough or potential treatment without even mentioning or highlighting this information.

I see this regularly in articles that our vulnerable community is exposed to.

Quoting from scientific documents but either with context changed or different context

A report might include a statement that over 80% of all patients had no side effects. What about the 20% that might be detailed in the scientific paper to have had side effects, some perhaps serious?

Transcription and additive errors

There are then the numbers, statistics and conclusions transcribed by the writer/briefing team of a press-release/Internet article/post that can then themselves be put into new representations (including even those innocent simple human typos!). This is more typical with casual internet posts than press-releases.

By an additive error I give the example of the following statement introducing a very technical scientific paper, perhaps in an internet post.

“Have you seen this ground breaking paper published yesterday? This treatment has to be approved TODAY based on these significant results!”

This example leads the reader to believe the results are scientifically ‘significant’. You won’t know this truly unless you read the article and, more importantly, understood the wider scientific consensus.

Misinterpretation of scientific paper conclusions

Having said right upfront, and quite glibly I admit, that we should always defer to scientific-papers, I am patently aware that they can be beasts of an intellectual challenge. Science is an objective, evolving process and open to change. Scientific documents are also often the result of a single study and can appear to the lay reader as incontrovertible fact. Whether the facts stated have clinical implications might not be certain, robustly significant (yet) and certainly often in need of confirmation. And still, the very existence of a single peer-reviewed paper can be observed by many as

“there’s the proof!”

I will just give a couple of titbits of advice here:

The language used by scientists in peer reviewed scientific-papers is intentional and calculated. One very common statement that you might see used in summaries and abstracts goes something like this.

“This paper provides a basis for further research”

Such a phrase is ‘writer code’ (and peer commentary) for uncertainly, ie lack of convincing and compelling proof.

Secondly, if the results of a study are not repeatable or shown to be unreliable for other reasons, then consensus may fail to materialise within the scientific community and the validity of the content might begin to wane.

Finally, scientific-papers can be retracted from even the most respected and high impact journals. However, this is generally only enacted in the most extreme cases because of the impact on the reputation of an individual(s) or institution.

Its worth taking another 5 minutes out to read about such an extreme case. You might need another coffee now!

Take a look at the now, infamous, Andrew Wakefield saga. It could be, perhaps, considered as the breeze that fanned the flames of the anti-vax movement. Just read about the power that a paper with just 12 (yes twelve) cases wielded and resulted in global distrust with the MMR vaccine in the 1990s. The technical paper, published in the Lancet in 1998, was eventually retracted some 12 years after it was published! But had the damage had already been done?

An ever changing landscape

New manifestations of silent and subtle misinformation appear all the time. One which I have been particularly concerned with recently is the fact that although a treatment candidate may not have ‘worked’ in a trial it might possibly just do for some subjects, following some further scientific analysis of the available data. Let’s face it, this is a very real possibility, in fact almost a certainty given the heterogeneity of our disease.

However, some presentations of such ‘hints’ of effectiveness can be highly problematic as they very often get translated as proven fact but without the vital longitudinal (sufficient length of time) objective evidence and still only supported by anecdotes. I see this with such statements as

“We know this works for some” or

“It has been proven to work for some“

But in reality there is often yet neither enough evidence to prove, nor are the some either validated or identified/categorised.

So how do we all set about counter acting and/or protecting ourselves against such misinformation?

The worldwide covid-19 pandemic has brought this tremendous challenge to mainstream attention.

A good place to start (that Julie Andrews link again!) is to look at we have all learned from this historic event. Two things absolutely stand out above everything else.

  • Is there a widespread Scientific Consensus? – always look for this. If there is no emerging scientific consensus beyond a singular paper’s authors, we should be on-guard and question everything.

  • Use direct facts checked (specifically from scientific papers or comprehensive and trusted reviews of (not social media posts)) with their original precise context to repeatedly counter misinformation and always refer to trusted sources of information if in any doubt.

Scientific consensus

 

is the collective judgment, position, and opinion of the community of scientists in a particular field of study. Consensus generally implies agreement of the supermajority, though not necessarily unanimity.[1] Consensus is achieved through scholarly communication at conferences, the publication process, replication of reproducible results by others, scholarly debate,[2][3][4][5] and peer review

https://en.wikipedia.org/wiki/Scientific_consensus

If ALS/MND Associations are not talking about a breakthrough it’s most probably not real or as relevant as stated in a press-release or other article.

What about those advertisements for alternative treatments? This is a whole area in itself so I will only just touch on it now, but please do have a read of this excellent article on alsuntangled.com

I will, however, mention the biggest red flag of all which shouts beware like no other signal!

And it is……….. Any statement that claims a therapy can treat a multitude of diseases.

This is such a huge, flapping, brilliantly crimson red flag that you should be very skeptical! It is highly prevalent with stem cell clinics, and others that are operating unproven/unapproved therapies, most often in, as yet, unregulated/less regulated regions of the globe. Some I have observed boldly extol that they are able to ‘treat’ up to 20 diseases! Oh and what precisely does the word ‘treat’ mean?

I will leave you with this snipet from a captivating presentation by Dr Jonathan Glass, an eminent ALS/MND clinician and researcher, on Stem Cells – The Hope and Hype at the 2016 ALS/MND Symposium. Watch the full version for a thoroughly excellent discussion of the types of hype that our community is battered with. Jonathan reflects some of the examples I described herein and the different ways his own work has been depicted. Enjoy.

Until next time, keep wisely cynical in these actually very very promising times for ALS/MND research!