Opinion. In 2014, I experienced NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn’t really do that much for me – I even woke up on November 10th after major surgery.
The build up to these events normally doesn’t start in earnest until around 3 months prior to 10 Nov. On or around this day, people meet up, patient conferences and support meetings are held, thousands of tweets and Facebook posts are published, people make and eat cakes, and money is raised. I suspect awareness of NETs benefits but these things can quickly be forgotten outside the rather small world of NET Cancer patients, specialists, supporters and advocates.
If ‘N’ is equal to the amount of awareness you can physically do, then ‘N + 1’ is the amount of awareness you need. You can never have enough awareness – one day doesn’t cut it. Some cancers have a whole month but they tend to be the big most common ones.
I’m in awe of those advocate organisations who organise these annual events and the patients who gladly join in to help by giving up their time. There’s a lot of time and effort required. It’s rather easy for me as I sit in my chair doing my bit – but I am doing it every day. A big advantage I have is that we now live in a connected world and there is an almost unlimited reach to a broad spectrum of people ranging from politicians to the worried well looking for a diagnosis. They all have something in common though …. they’re all connected to the internet and looking for information, looking for a feed. Social media is really powerful but the message needs to be compelling to persuade someone to read my feed again and again. I guess when you are marketing something on a face to face basis, it’s a different ball game but the principles of persuading someone to ‘read your feed’ are the same.
Having analysed 10th November activity and the week leading up to it, I think it was pretty much like last year, i.e. the same old tired old clichés and icons, together with out of date and inaccurate information and patients and patient advocate organisations share them between each other. I want new audiences and ones who will stick with me instead of liking a tweet on November 10th. This is what the NET Community needs too.
Although I woke up on November 10th after my surgery in 2010, I only really woke up to NET Cancer Day (the event) in 2014 where I and others met and lobbied our respective Members of Parliament at a NET Patient Foundation sponsored event. I was also honoured to lobby side by side with my surgeon (Neil Pearce) who is also one of the Medical Trustees for the Foundation. I felt that activity made a real difference and I was so enthused by this event, I decided to step up my own campaigning activity using my blog to push and push for more recognition of our disease. Attracting the notice of politicians is a good awareness tactic as long as the foot remains on gas peddle. In regards interactions with politicians, I’m always happy to see the annual state declarations of support in USA, coordinated by Carcinoid Cancer Foundation.
When I consider the PR campaigns of other cancer types, I admit to being a tad envious. For example in the UK, breast, lung, bowel and prostate cancers probably have more awareness ‘value’ in a single week, than NETs get in a single year. However, these are the ‘big 4’ cancers and as a consequence attract a lot of support (and therefore resources) and are backed by government public health campaigns (e.g. in the UK, the ‘be clear on cancer’ campaign covers most of these cancers). OK, they have a lot of resources but they focus on people rather than icons and I firmly believe that is part of their success.
Because NETs is a less common disease, the necessary ‘clout’ needs to be as wide as possible and this means international efforts to supplement national campaigns, particularly for awareness and recognition. But the strategy needs to be coherent and effective? Of course, we need to get patients on board because patient stories are vital, particularly (and accurately ….) in the national news and TV. Resources (people and cash) are always going to be an issue and some high-profile patients or ambassadors would be extremely useful but they tend not to want to get involved. Read my Anatomy blog to understand more about the effects of this issue.
I strongly believe we need new audiences – nationally and internationally. To be more attractive to the ‘outside’ and new audiences, we also need a convincing and compelling ‘line’. By ‘line’ I don’t just mean an icon or a phrase, I mean a whole ‘PR’ package. It’s very difficult for rare and less common cancers to get high-profile and continuous publicity (sometimes, to be rare or less common is to be ignored). Therefore, this ‘line’ needs to be something that captures people’s imaginations and persuades them to be associated with the cause. It also needs to avoid being too ‘introvert’ by using oblique, confusing, outdated, single issue icons conveyed by what are essentially memes and which are only liked and shared by patients. It also needs to be accurate.
New audiences means new thinking ….. different thinking. One of my methods is to increase the audience reach by forming relationships with non-NET organisations including physicians. Some of this is extremely hard work. For example, the 2016 WEGO Health Awards took a considerable amount of personal effort and time and ditto for 2017. However, there’s a lot of new audiences out there now hearing about NETs that had never heard of the disease until I was able to use the platform of these awards. It’s worth it. Here’s a statement from the CEO of WEGO Health:
In terms of my own ‘online’ efforts, I’ve established a Neuroendocrine Cancer ‘footprint’ on the internet in a relatively short space of time. My blog is now appearing in many searches – statistically, search engines now account for around 12% of my views, second only to my Facebook page which is a whopping 37% – thus why I push this outlet a lot. I’m building up a new brand page here for some future projects – check it out.
My ‘digital footprint’ enables people and organisations to find me. An example is Ipsen who then invited me to a patient workshop in Paris asking for patient input to their website plans (see picture below). I’ve also presented patient-centered presentations to Ipsen HQ in Paris and their Germany and UK HQs. Guest and featured blog opportunities are on the increase and you can see the results of some of these on the blog home page, along with some nice comments received from readers.
With your help, I was able to get to the final of the annual 2016 WEGO Health Activist Best Blog and Best Community Awards, going on to win the Best Community. That means YOU won the award too! In 2017, I managed to make the final in 3 categories.
This time in 2014 my blog viewing figures were modest, less than 5,000. I’ve just tipped over half a million hits with over 250,000 visitors (9 March 2018). My Facebook site is now the main ‘front’ for my blog. However, it’s turning out to be something greater than that having attracted more than 5800 subscribers (9 Mar 2018) in a relatively short period. If you know anyone who would benefit or be interested, please recommend my blog Facebook page. The bigger it is, the more chance I will have to attract the new audiences I mentioned above. Using my Facebook page, I generated a ‘virtual’ 2016 NET Cancer Day event which attracted 47,000 views with around 7,000 people invited. The 2017 event was less successful but that is down to me for not marketing it. Join the 2018 event here and feel free to invite others: Every day is NET Cancer Day
My 3-year-old NET Cancer Awareness twitter account is heading towards 4,000 genuine followers – my personal twitter account is heading for 5,000 followers. Both of these accounts also function as fronts for my blog but are also used for many other activities – mostly campaigning, awareness and finding new audiences, e.g. I also support many other cancers on these accounts which is resulting in support coming the other way. This is, therefore, a method of generating awareness of Neuroendocrine Cancer to ‘external’ organisations by talking about patient experiences and patient views without resorting to legacy NET messages. The twitter post below is the most tweeted post about NET Cancer in the history of NET Cancer awareness. Twitter now accounts for 5% of my blog hits, the third biggest source. That doesn’t seem much but twitter is very much part of my strategy to attract new audiences and high-profile sources of support for NETs. This is supplemented by my twitter newsletter which you can now receive without being on twitter. This has become my 4th biggest source of hits in a really short space of time and growing daily – sign up here: Ronny Allan twitter newsletter.
The vast majority of people on twitter and my twitter newsletter are not NET patients. I’m constantly reviewing my strategy hoping to maintain momentum. I’ve also had to drop some of my other commitments in order to give it the correct focus. I’m now finding a lot more contact from non-NET people who approach me rather than the other way round. You can support my awareness campaigns on Facebook, twitter, Pinterest and my top campaigns are found here (click here). If you want to see some of my favourite pictures from places I’ve been or want to go, please check out my Instagram Page – here
When I set my blog up on 29 Apr 2014, I never imagined for one second it would be anything other than an obscure and niche site getting a couple of hits per day. I’m therefore really grateful to those who are supporting me including my most recent followers. It’s your support that inspires me to write the posts and then offer them up as awareness messages or simply words to help patients. Now, not a day goes by where I have not tweeted or posted something about Neuroendocrine Cancer. Although 10 Nov is approaching once again, for me……..
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