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The “fake news” fighting MacMillan “Digital cancer nurse”: my initial thoughts…

 

EllenMcPake-20171030124432159

Today, I want to look at the story that the MacMillan cancer charity has felt it necessary to employ a nurse, Ellen McPake, to fight fake cancer information online and interact with cancer patients. A link to the video I will be commenting on can be found here:

http://www.bbc.co.uk/news/av/uk-scotland-41808212/digital-nurse-fights-fake-cancer-information

Please watch the short video before reading on! 🙂

This post will be followed up with an associated YouTube video tomorrow when my internet connectivity is fully restored (I will place a link below)! So, this post acts as a quick reaction/discussion of the main points raised in the video (written on the screen as the video progresses)

As someone that has had a relative suffer and die from cancer, this story really jumped out at me. So, I wanted to take a look at the video above, give my initial thoughts and open things up for discussion with you guys!

I haven’t had time to research these topics in depth, so I’m happy to be proved wrong or educated in certain areas.

So, to the video…

Do cancer sufferers look to the internet to find information about their illness?

I was shocked to see it quoted that only 2/5 of patients took to the internet to find information about their condition and look at potential treatments and therapies. I’d have thought this number would be much closer to 100%!

When I snapped my achilles tendon, a much less serious condition, I remember spending hours on the internet looking at surgical papers, potential treatments, recovery metrics etc. I remember this picture really spoke to me:

 

components_hierarchy

Perhaps, these numbers are slightly skewed by the fact that more older and less tech-savvy people suffer from cancer on average (?) and that means that the number of people turning to the internet for medical advice will only increase in the future.

 

One nurse is fighting against fake health news online

Frankly, I think it’s amazing that we’ve got to a point where information is so readily accessible and free-flowing that this measure is needed.

However, the internet is weakly policed and doesn’t display the same rigour as a medical trial or scientific study. I regularly hear friends and relatives saying things like “X treatment/drug worked for Uncle Jim” and the like. But often, people are simply falling into the traps of correlation not meaning causation. It’s only natural, we are pattern seeking animals.

Of course, some unscrupulous people undoubtedly post known false information online to make money or achieve notoriety, but I’m sure most just want to help those that are suffering. As someone that has watched a loved one suffer and die or cancer, I can appreciate that.

The problem is that, when potentially false information is posted online, it can lead people to panic and potentially turn away from conventional, proven treatments. It’s great that the “digital nurse” could potentially reduce such occurrences.

Now, will this nurse be plugged into the latest breakthroughs in cancer research? And will she be free to discuss and review treatments that are outside those specifically favoured by the NHS? That’s not clear at the moment.

The NHS isn’t perfect, and I can certainly understand patients wanting to try less rigorously trialled and tested therapies when they have no other recourse. In fact, I’d completely support them having greater autonomy in this area.

 

Sodium bicarbonate cures cancer

I mean, wouldn’t this be one of the cover-ups of the century? If something you can buy a kilo of for less than a fiver in Wilko’s could cure cancer?

I’ve heard all the conspiracy theories that “big pharma” doesn’t want to cure cancer, but things like this seem a little far-fetched.

 

There are trust-worthy and untrustworthy sites for getting cancer information

 

I think that overall, what Macmillan is doing is a really positive step, but this nurse needs to be plugged into the latest advances in cancer treatment and therapy and not just be tied to the party line of MacMillan or the NHS.

Medical trials are the gold-standard for cancer treatments, but some therapies/drugs/treatments espoused by none NHS affiliated sites may show promise, and potentially be worth turning to, at least in a patients view, when there are no other options. I’m actually going to step away from scientific rigour for a moment and say that I can understand people wanting to try out of the box and less medically trialled treatments when they have no other options. Could such therapies be made more accessible on the NHS, perhaps if the patient wishes to cover the cost? It certainly warrants further discussion.

One thing the nurse could certainly help with is explaining the NHS’s scientific rationale regarding new wonder drugs or treatments that a patient may have seen. If a patient has seen that someone in the US is trialling an experimental therapy, it might be quite crushing that many in the UK cannot access the same therapy.

 

Summary

The NHS and cancer charities are not all knowing, but, on the whole, I think what MacMillan is doing is a positive move.

I know most people on the internet want to help those that are suffering, but you have to be very careful when you are posting information that will be seen by people at their most vulnerable. It could have the opposite effect to what you intend.

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The scientific process in memes: Science meme sites please take note…

Box lid

As mentioned in my previous post, “I f*cking love science”  (and similar websites) does an awful lot right.  It uses its highly effective hooks to: inform subscribers about breakthroughs in science they may otherwise overlook, provide links to online scientific seminars and help to break down some of the negative stereotypes surrounding scientists. However, it also gets a few things wrong e.g. It uses worn out memes that contain inaccurate science and which misrepresent the scientific methodology.

There is no problem with using memes, flowery quotes and pretty pictures per se. But, if you are going to continue using them, then please at least do something useful, mildly innovative, and teach the scientific methodology. Require people to engage their critical faculties and understand some of the issues in modern science and society. I had a go when I was bored. Please click the link below and let me know your thoughts! (some zooming required)

Science game

Science is hard. It requires skill, hard work and dedication. You regularly feel over worked, under paid and under valued. But, you do it because you love it! Please play the game. 🙂

S x

 

I F*cking Love Science: A gleaming hook, a questionable fishing rod

Last time:

Why Brian Cox is a dirty cheat 😉[1].

Science communicators need “hooks” that pervade mainstream culture to draw new audiences to high level science. I explained how, today’s science communicators often outsource these hooks (specifically comedy) to experts outside of science, and how this outsourcing does nothing to help the damaging stereotypes of the scientist.

This time:

I f*cking love science: A gleaming hook, a questionable fishing rod

               Millions of people fish worldwide. For many it is simply a way to relax, unwind and clear their heads. They will throw back the fish once they have caught and catalogued them. For others, it is an essential means of survival. The catch will provide basic sustenance. However, all these fishermen have two things in common. They know they will do something worthwhile with the fish once they catch them, and they appreciate the need to use the appropriate bait and hook for the job.

Fisherman

Just like those fishermen, we science communicators need shiny hooks to attract new audiences to engage with, enjoy and become excited by high level science[2]. These hooks can be comedy, music, poetry or anything else that pervades mainstream culture. But, what’s the point of hooking new audiences if what you do with them afterwards isn’t entirely worthwhile?

The webpage “I f*cking love science” has become such a questionable fisherman. You only need to look at Facebook to see the whale of a fan base Elise Andrew’s site has reeled in. The hook of motivational language and quotes, memes and high resolution images works so well that it endangers fish stocks!

The website does a fantastic amount right. It uses its highly effective hooks to: inform subscribers about breakthroughs in science they may otherwise overlook, provide links to online scientific seminars and help to break down some of the negative stereotypes surrounding scientists.  However, it also gets a few things wrong. So, where can it be improved?

IFLS_Facebook

Well, the real problem is simply the site’s name. While the website may claim that “that’s funny” is “the most exciting phrase to hear in science”, one of the most laughable features of the site itself is often its interpretation of science.

Below are a few examples of what the website classifies as science:

Dendrite Oven Michio

The content includes: pretty images, memes and flowery, inspirational quotes from famous science communicators including Neil deGrasse Tyson and Michio Kaku.

This isn’t science. Even Elise herself admits, “I’m just telling people things I think are cool.[3]” There is certainly nothing wrong with liking any of these things. Indeed, I am a fan of each of these three genres, and have regularly shared IFLS content. But, it isn’t science. Science is people, and the scientific method is a collective human endeavour, in which people make theories, test them based on observation and refine these theories when the tests disagree with them[4]. If you want a perfect and incredibly simple explanation of what science is look here[5]. The following plots illustrate clearly how – on average – IFLS’s subscribers laud amusing, beautiful or otherwise emotionally stimulating images far and above solid science.

skeletons Seminar

Part of this imbalance is, of course, due to the proclivities of the subscribers themselves and is beyond the control of the website. That said, IFLS’s methods are not entirely blameless. IFLS is a fantastic hook to draw people to science; it is clear that making 400+ people aware of a scientific seminar as opposed to zero is a massive step in the right direction. However, sadly, the site’s content often doesn’t chime well with, or teach its followers much about, the scientific method when they do flop onto the bank.

Why does this matter?

If the site were purely recreational and didn’t advertise scientific seminars and the like, it wouldn’t matter. We all like pretty pictures. I have an image of the Hubble Telescope Deep Field as my desktop background right now. But, while the site continues to do this, and/or followers continue to view it as a “science site”, it does matter.

One important aspect of the scientific process is that all work is scrutinised, checked and repeated. This process ensures accuracy and the dissemination of a consistent message.

peer

All work is peer reviewed. This is not the case with the content of IFLS, which Elise describes as, “the inside of her brain”, not a fact checked stream of verified information, but a personal brain dump. This leads to IFLS content that is regularly wrong or misleads followers regarding the scientific methodology. This is irresponsible, particularly when dealing with such a large and scientifically curious consumer base. Consider the following post (which is far from the only example of its type, and probably isn’t the best):

Planets

There are 8 planets in the solar system. This is not debateable. It is a fact based upon the agreed scientific definition of a planet we use[6]. It may only change if the agreed scientific convention changes. However, the number of planets does not change based on the fact you can name more than 8 rocks orbiting the Sun (wrong), and it definitely doesn’t change based on your personal choices or feelings regarding the matter (misrepresents the scientific method).

IFLS regularly blurs an important line. It suggests that the scientific method is personally pliable and that the most important aspect of science is the personal satisfaction and hit you can draw from it. This is a problem that pervades modern science, and its communication, and has been recently discussed in relation to the famous TED platform[7].

There is no doubt that science can be amazingly fun and emotionally satisfying. But, this isn’t its purpose. IFLS dangerously merges the positive personal reaction people have to the hook designed to draw them to science and the science itself. This is a subtle, but important distinction.

I’m not saying this to be controversial, undermine I f*ucking love science or to have a go at Elise Andrew. I’m just a fan of IFLS, and I genuinely f*cking love everything positive it has achieved. It’s just that, like all the CERN analysis code I have ever written, it needs some bugs ironing out. Merging science and entertainment is extremely difficult. I know this better than most! The two often tug in different directions. The essence of science is ‘it is what it is’ – whether we like it or not. The audience’s ‘feelings’ are irrelevant. In order to be scientific, they are supposed to suspend their beliefs and engage their critical faculties. The essence of entertainment is ‘it is what it feels like’.  It’s not surprising that some tweaking of IFLS’s content is necessary. It is a pioneer in an emerging field.

I just don’t want IFLS to be yet another symptom of the “buzzfeed” culture of modern media, where well informed, well researched and fact checked content is readily replaced by content that may lack these qualities, but generates the maximum number of likes and shares from an insatiable consumer base[8]. It’s too important for that, and it can be far better than that.

Buzzfeed

I also don’t think it should continue to dominate the online alternative science outreach space in its current, slightly flawed format. Where, despite the holes in its scientific message, it dominates the “hook” marketplace of alternative science outreach. Why would you listen to X when IFLS, despite its faults, seems to have everything wrapped up so nicely in your Facebook newsfeed already?

Like Ahab, IFLS has harpooned a whale of public support, and I don’t want to see it dragged down in its continued pursuit of it.