Our latest YouTube video for Cancer Research Demystified came out yesterday, and it attempts to answer this very tough question: what is the single greatest challenge in cancer research?
Here’s a little behind the scenes look at how the video came to be!
I’m still not back to working in the real world post COVID19, so Hayley and I are mostly making separate videos this year, but finally we are both on screen ‘together’ again, as she recorded a clip for this one from her house! To pull the video together, I combined mine & Hayley’s thoughts on the topic with those of our internet friends, along with the key strategies of some of the leading funding bodies. The response to this lofty question across Twitter, Instagram, Reddit, Facebook, this blog, LinkedIn and my various DMs was fantastic and really enjoyable to read – everyone had their two cents, from researchers, students and clinicians to patients, advocates and the funders themselves. So many opinions were expressed that one thing became immediately clear: this is not something we all agree on! I attempted to pull together some common themes, which in my mind fell into a few subdivisions of either biological challenges, or research barriers.
How long does it take to make a CRD video?
I’ve been asked this question a few times, so I thought I’d use this video as an example and go through each of the tasks: The question I was asking for this video was open for answers for approximately one month across our different online platforms. Input from me asking this question in different places throughout this month was probably a combined total of 30 mins – nothing huge. Once all the answers were in, I spent about three hours one evening collating them (i.e. lots of screen shotting!) and trying to find common themes, as well as making the summary PowerPoint slide which I would use as an anchor throughout the video. Filming took about two hours one Saturday, followed by approx. five hours of editing – including re-recording some bits that didn’t make sense.
The rough cut, which contained all the bits I wanted to include initially, was about 75 minutes long – I clearly have spent too much time lecturing this term and was enjoying the sound of my own voice too much!!
The final edit was about 20 mins long – much more palatable I hope!
Export, upload and writing social media descriptions took a couple of hours that Saturday evening. Release the next day and sharing everywhere took about an hour. All in all this adds up to about 13.5 hours of my personal input for this video, give or take.
I would say this is on the light end of average for a CRD video. Some of our videos are miraculously conceived, edited and uploaded within one evening session of 3 hours after work on a Tuesday (6 human hours, since there would usually be two of us), but this is extremely rare! Generally we spend one evening planning, one evening filming and starting to edit, and a third evening finishing editing and uploading, so more like 18 human hours. Our first few videos back in 2016/2017 needed to be re-recorded several times, as we were awkward on camera, unpractised at getting everything we needed, and not working particularly efficiently yet. I’d say the longest was one of our early videos about blood samples – which must have been over 50 human hours, or at least it felt like it…
My favourite part about making this video was reading through all of the answers we received, particularly on Twitter, Reddit and Instagram. This turned into a whole conversation, and it was great to see so many researchers, patients and advocates discussing their views on cancer research. This is exactly what we have always been hoping to achieve with CRD.
My least favourite part was when I saw that the rough cut was 75 minutes long… that is just too long for a YouTube video, too detailed, too rambling, and I knew I’d have to work hard to cut it down to an acceptable length. I ended up cutting out my description of each of the 9 grand challenges that CRUK are currently trying to fund, which was detailed and took a fair amount of effort to pull together. It’s never fun to leave science on the cutting room floor! I think it was worth it in the end though.
If I could change one thing about this video, it would of course be that I wish it was filmed in the lab with Hayley. Maybe that will happen again one day, if I can get my hands on a vaccine….
I think that covers all the ‘behind the scenes’ for this video. Please watch it if you get a chance to, and share with any patients, carers, advocates or students you know who might like to find out more about cancer research!
When Hayley and I began our YouTube channel, Cancer Research Demystified, we had a clear aim in mind: to give patients & their loved ones answers to their questions about cancer research. We began with tackling the science of common treatments like chemotherapy and radiotherapy, explaining the latest hot topics in research like immunotherapy, and showing footage of what happens to a patient’s donated blood or tissue sample when we receive it in a research lab.
But over time, we noticed that these weren’t necessarily the most common questions we were actually getting from patients. Whether we were discussing latest advances in a support group meeting, consenting a patient to take part in a research study, or even just chatting to a taxi driver or barman who mentioned they had a family member with cancer – one question type was emerging as a very common trend.
Cancer conspiracies.
Now and then, patients & their loved ones would ask us if it was true that big pharma is keeping the cure to cancer a secret. Or indeed, politely inform us that this was happening, and with certainty – to them it was a fact.
While getting an Uber to my lab one day in Cold Spring Harbour Laboratory, USA, my driver told me that what I was doing was a waste of my time – that his cousin was importing the cure from China and selling it at a very reasonable price, and that the US regulators refuse to approve it, because they make too much money from chemotherapy.
In trying to engage with the online cancer patient support community, I joined a wide range of Facebook cancer support groups early on in the Cancer Research Demystified days. I was baffled at the sheer volume of misinformation being shared there. It seemed every time I logged in I came across someone trying to make money off desperate cancer patients – whether it was essential oils, CBD products or alkaline water, the list goes on.
It enraged me to see people trying to make a quick buck off vulnerable people. A cancer diagnosis is an extremely overwhelming thing, with patients getting a huge amount of technical jargon thrown at them during a time of great emotional challenge. You can’t be expected to get a PhD or MD overnight, in order to tell apart the clinicians from the scam artists, and you shouldn’t have to.
Of course the moment you bring up this topic in an office full of cancer researchers – you get a response. Everyone had their story to tell, whether it was a vulnerable relative being lead to believe they could avoid surgery for their cancer and just get acupuncture instead, or a set of memes or viral tweets convincing people that cancer researchers like us are keeping a cure a secret in order to line our own pockets.
It didn’t take long for us to decide to make a small series about this for YouTube. We roped in a colleague, Ben Simpson, who had a penchant for schooling those who were attempting to spread misinformation online. And so far, we’ve produced three episodes, under our series ‘Spam Filter’. The aim is to address these sorts of questions by reviewing the peer reviewed literature on each topic, explain the facts, and discuss why some of these rumours or myths might have managed to take hold.
This topic is persistent online, and it’s easy to understand how it has grown legs, given some of the chemicals found in cannabis can genuinely help to relieve some symptoms/side effects of cancer or cancer treatment. It is not, however, a cure.
This one is a bit irritating to us to say the least, given we have all dedicated our lives to researching cancer. It’s also hard to provide peer reviewed data on something that isn’t real, but we’ve done our best to explain the reality of just how hard it would be to cover up a cure, given the numbers involved – as well as why nobody would bother, given they’d become rich beyond their wildest dreams by just marketing the cure instead!
This is a persistent myth online, that making you body more alkaline by eating alkaline foods (which in some case are actually acidic) could prevent or cure cancer. It’s a trendy diet, that really doesn’t make much sense at all. However, it’s very easy to see why people might think it is working, given they can test differences in their urine’s pH, that make it seem like something is changing. For this video we did some urine and blood tests on Ben, before, during and after a day of eating this diet, and discussed the facts and myths involved.
Which cancer myth do you think we should bust next? Or better yet, is there a rumour, trend or theory going around that you’ve seen, and you can’t tell whether it’s legit or not? Let us know and we’ll try our best to get to the bottom of it!
Are the influential Professors who made their names guesting on talk radio shows or writing opinion pieces in the national papers a thing of the past? Will they be replaced by a generation of #scicomm advocates, sharing lab bench selfies and vlogs? I’ve seen the latter spark eye-rolling and accusations of vanity – could it be true that this new brand of public engagement is less impactful, or does it still do the same job of engaging with the public, and ultimately make lofty academics more relatable to the average Joe?
These are some questions I’ve been asking myself over the last few years, while actively engaging more with other academics and the wider public online. Am I building towards becoming part of a new generation of influential Profs in the future, or just making myself look like an attention seeker?
To pick this apart, let’s start with why academics seek to communicate with the wider community in the first place.
Effective communication is key to ensuring our research has an impact within the wider community. For us to enact change in any field of academic research, we need to have discourse with other non-academic professionals, patients, advocates, teachers, politicians – whoever it might be.
Additionally, with more and more papers being published each year, it’s hard to get ours noticed within the academic community above the sea of new data without publicizing our work in some way. As a result, researchers like myself are scrambling to draw attention to our findings everywhere and anywhere we can, living in fear that our work may go unnoticed, gathering dust in the depths of Pubmed.
But at what point does publicizing your work, or describing it for a wider audience, cross over into attempted-influencer territory? And if it does – is that a bad thing?
As with anything, opinions vary – but it’s certainly not rare in my experience to come across a peer who believes that an influential Prof who gets invited onto talk radio should be revered as a great communicator, while one who engages on Twitter, or god forbid, Instagram (!) should be dismissed as an attention seeker.
Will this continue? Will one or the other die out, or perhaps will traditional media and social media merge over time, with the distinction becoming less relevant? To me, this appears to already be happening, with some of those revered Profs gradually turning to social media – particularly Twitter.
Will tomorrow’s generation of great academic communicators summarize their think piece from the Economist with a viral TikTok?
Where do I fit in to all of this?
Let me share some of the numbers with you that encouraged me to start engaging more online myself.
In the ten years from 2009, when I was an undergrad, to 2019, when I was applying for my first faculty roles, the number of papers about cancer being published in Pubmed almost doubled, from an already massive to 123,530, to a phenomenal 222,784. That’s nearly a quarter of a million papers in just one field, in just one year!
More research is great – more papers, more data, more opportunities for our field to advance. But it’s also more papers for each of us to keep up with. We can’t possibly each read this colossal amount of work, while still conducting our own research. And what if a paper does get lost, and nobody reads it – nobody will ask the next question, run the next experiment, or take the next step. At that point – why did we bother doing the work in the first place?
With this in mind, many of us – myself included, who lack contacts or cred in traditional media, are turning to social media to get our work out there. We’re using the internet to try to improve our paper’s Altimetric score, something which puts a numerical value on how much attention a publication has garnered. Maybe it starts with a tweet, or a blog (ahem), or a post on LinkedIn or Reddit. Personally, I’ve tried all of these, as well as dabbling in producing lay YouTube videos describing our latest published work. I’ve even tried posting paper abstracts on Instagram at this point – which surprisingly did get a few likes despite semi-drowning in a sea of selfies.
All sounds fine, right?
But with social media, you have the same issue as with Pubmed – an ever increasing deluge of content, drowning out your little post among millions of others.
To fight this, I’ve been actively trying to build a following on various social media platforms, within the scientific and academic communities. I want like-minded people to read my papers, and for them to do that, they need to see the tweets/blogs/videos that describe or link to them, so I need more followers, more retweets, more likes, etc. etc.
I’ve actively gotten into a habit of putting spare moments here and there into tiny social media tasks, all with the aim of building my own following. You might catch me liking a post about someone else’s paper while I’m making a cup of tea, retweeting a video while I’m walking to the shop, or following a few fellow scientists while half-watching Netflix. Any content of my own such as a blog like this, a YouTube video or a more detailed Twitter/Instagram post is produced in bulk on the weekends, and scheduled to be released throughout the week so that it appears like I’m constantly engaged, even though I do actually have a ‘day job’!
And it has worked a little bit, getting me from a few dozen followers to a few hundred, and now heading towards a couple of thousand. Nothing huge. Social media is the signpost as far as I’m concerned, directing people to my ‘actual’ work, rather than the endgame in and of itself.
But is that how it comes across?
Do I just look like an attempted influencer?
I received a message from a stranger a couple of weeks ago, after I helped to launch a joint Twitter account with a few like minded academics called ‘Academic YouTubers’. The stranger said something along the lines of ‘prepare for an influx of academic influencers’.
It was the first time I had heard the term ‘influencer’ used to refer to what I had considered to be people working in science communication or ‘sci comm’.
To others, does it look like we’re trying to become influencers? Using papers to garner followers rather than the other way around? Using social media in an attempt at garnering fame or even financial gain?
The idea of being an influencer within academia does tickle me a bit, I must admit. Imagine if our next ‘Cancer Research Demystified’ video included a sponsorship deal, where we advocate the use of a particular brand of RNA extraction kits and offer a discount code on your next purchase, or happen to be wearing lab coats with a name brand clearly visible and ‘#ad’ in the video description…!
I would like to think it’s clear to our (few) viewers that that’s not the aim of our channel – we’re purely trying to connect with cancer patients to tell them about cancer research.
But is that really how it comes across?
One moment sticks out in my memory on this. I posted a story on my Instagram page a couple of years ago, toasting a paper acceptance with a flute of prosecco. I was happy about the good news, and it’s a habit of mine to share the positive moments in academia, as they can be few and far between! That evening I received a reply to the story, from an old friend I went to college with. It read ‘Sweet Jesus, Sue is insufferable‘. Within an instant they deleted the message, but I had already seen it, before they presumably sent it to whoever the intended recipient was. It hurt my feelings a little, and made me question my online presence. Is it too much? Too self-congratulatory? Too vain?
That message still lingers in the back of my mind today, whenever I hit ‘post’.
Am I doing the right thing to post frequently, trying build a moderate audience one day and grow better at communicating my work with the wider world, or am I simply alienating my peers, overloading their feeds and making them role their eyes at my perceived attention-seeking behaviour?
Furthermore, can I really argue against this label, when really attention-seeking is pretty much exactly what I’m doing, just for my work, rather than myself?
At the end of the day, when I take a step back from all the minor details and self doubt, I firmly believe that engagement between academia and wider society is key to the advancement of civilization.
And if I believe that, then I suppose I need to continue to do what I’m doing – communicate wherever I can get a platform, explain my findings, their significance and what I believe should happen next. And for that to get seen, I also need to continue the less substantive posts, the odd meme and a whole lot of retweets, that help to game the algorithms and build that all important follower list.
After all, that’s how the rest of society is communicating nowadays – so for academia to stay relevant, surely we should follow suit.
Furthermore, the benefits to me of engaging with other scientists online are immeasurable, and deserve their own future blog – I’ve learned so much from other researchers debating their views on Twitter, and this does allow me to better inform my own work.
I suppose I’ll just have to accept that for every ‘like’ I receive from a former colleague, I’m probably also receiving an eye roll from another. And for as long as my #scicomm attempts seem to stimulate some minor engagement and/or discussion, I’ll have to keep going.
To be honest, I still feel uncomfortable about the term ‘academic influencer’, but perhaps that will change. I look at the next generation – today’s undergrads, the #scientistsofinstagram (yes it’s real, go look) who I oftentimes see posting heavily edited selfies in their lab coats and plugging particular trendy stationary brands. They seem to be actively aiming for the ‘academic influencer’ label. Is there anything wrong with what they’re doing? I don’t think so, so long as they aren’t spreading misinformation. And if I’m not going to judge them for their brand of science communication, then I suppose I shouldn’t judge myself for my own version either.
As always, comments, thoughts and discussion welcome. Go on – tell me I’m insufferable, you know you want to!
Heavey Lab 