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. 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 NET Cancer benefits but these things can quickly be forgotten outside the rather small world of NET Cancer patients, specialists and advocates.
My 2014 experience was a memorable one 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. Why? I just felt there was something missing, I felt there was a gap …….. and I felt different thinking was required.
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 Neuroendocrine Cancer gets 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 real PEOPLE and I firmly believe that is part of their success.
Because NET Cancer 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 newsecurity and TV. Resources (people and cash) are always going to be an issue and some high-profile patients or ambassadors would be extremely useful – 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 memes. New audiences means new thinking ….. different thinking.
In terms of my own 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 11% of my views, second only to my Facebook page which is a whopping 45% – thus why I push this outlet a lot! My ‘digital footprint’ was found by Ipsen (see picture) 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 centred presentations to Ipsen HQ in Paris and their Germany HQ. 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 Award – read about this here.
This time in 2014 my blog viewing figures were modest. I currently stand at around 226,000 hits and 110,000 visitors (Feb 2017). I will tip over a third of a million hits by the end of 2017. My Facebook site is now the main ‘front’ for my blog. However, it’s turning out to be something greater than that having attracted around 4000 subscribers (Feb 2017) 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.
Using my Facebook page, I generated a ‘virtual’ NET Cancer Day event which attracted 47,000 views with around 7,000 people invited. Over 2,000 people were still there in 2016 attending/interested. Join the 2017 event here and feel free to invite others: Every day is NET Cancer Day
My 2 year old NET Cancer Awareness twitter account is heading towards 3,000 genuine followers – my personal twitter account is heading for 4,000 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 and icons which lack the necessary ‘kerb appeal’. The twitter post below is the most tweeted post about NET Cancer in the history of NET Cancer awareness. Twitter now accounts for 6% of my blog hits, the third biggest source. This is supplemented by my twitter newsletter which you can now received without being on twitter – sign up here: Ronny Allan twitter newsletter
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).
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……..
With your help, I was able to win the annual 2016 WEGO Health Activist Best Community Award – read about this here.
Thanks for reading
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