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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