Fibroflutters #SocialMedia #healthadvocacy and #allstakeholder approach to #healthcare, across the globe – Peeking at the statistics!

FibroFlutters, Social Media & Health Advocacy whilst striving for ‘all-stakeholder’ approach to healthcare across the Globe

Setting the scene

All the ‘talk‘ about companies becoming person / patient centred really makes ‘one‘ wonder how we’re doing ourselves at achieving our own status and reaching patient-centricity. Becoming connected to all stakeholders, opening up co-creative, and collaborative, opportunities to help create a better world for patients just like us. 

It’s not an easy task, really, is it? incorporating ‘everyone’ into your ‘day to day‘ business models, but in the long run you do start to see the great benefits from doing so. During my time working within the hotel and leisure industry customer services was one of the key ‘skill-sets’ required, and during my Masters of Business studies I got to become very engrossed with ‘Corporate Social Responsibility‘ (CSR) alongside Corporate Strategy and how together they can be excellent tool-kits for customer – business engagement,… so it’s no wonder that I took this approach!

Considering that I included all stakeholders from the start of FibroFlutters life through the use of Social Media Networking the transition hasn’t been as complex for me. After only one year of life I was already looking into a three-dimensional working model to base my group development on. It made common sense from a strategical perspective regarding organisational structure and the work that we primarily do online.

It was an important move forwards in order to meet the aims laid out in our start-up conversations back in 2014 regarding providing health related support and advice via sharing relevant information. Also, for advocating through social media campaigning / marketing and giving people from the world of chronic illness a library / portal of where to find relevant web-sources to find out information.

It only took one year for me to realise that I would need to build an online infrastructure. How I came about this was after studying the dynamics of FibroFlutters on & off line and noticing that in reality a lot of people want the support but can’t leave the house due to illness, having a young family, being at work, or not living close enough. Health related support groups like ours in Sunderland require a communications avenue, and for FibroFlutters it was essential for our members and also our growth as a group. However, nothing is ever simple is it? In order to get us all on the same page I ended up building profiles across many social media channels so that FibroFlutters was always find-able, easy to locate. Little did I know that I was multi-channelling and building a social media network, YES! you heard right a network and completely by accident.

We were already established on Twitter and it has remained the strongest of channels for us at FibroFlutters with regards to connecting with others, #notjustpatients. Linked In has become a hive of ‘busyness’, scuse the pun! We have a fabulous and varied following from across many industries not just healthcare, which is great that we are reaching the needs of ‘everyone’, as well as getting our messages out to ‘everyone’. Facebook is popular with others and better for discussions. Pinterest makes a great noticeboard, the website a library and YOU Tube well that’s our cinema, theatre, zen-zone and lecture hall.

Do you catch my drift!?

We have organically grown over five years and it easy to see by our our statistics that we are doing quite well at reaching varying stakeholders on our social media channels. Twitter, WordPress website, Nuzzel and Linked In, in particular, which are what I use in this article. It is also clear to see that we’re actually massive by means of impressionism, but only as a ‘small‘ network of followers, approximately 6,000 Worldwide.

You don’t have to have thousands of followers to make an impact as you can see by my twitter stats that show our impressions reaching over 100k in a month sometimes.

The penny dropped on pharma at Barcelona 2018

Last year at the eyeforpharma Barcelona conference, on March 14th I was facilitating round-tables in the ‘Patient-Track’ and when we got to the last session, I ended up becoming quite animated. 


As I sat and listened to the participants discuss how to help create a more patient-centric environment and how they could sway their bosses into believing the move was necessary, it soon became apparent that no-one was taking into consideration that patients ‘rely’ on all stakeholders. 

When I first set FibroFlutters up and gathered a few fellow co-founding team members one of the first things we addressed when discussing what our HOUSE RULES would be was that the door would be open to everyone, especially to other family members and the caregivers.  Not one aspect of the medical healthcare industry can survive without us as ‘patients’ and we are the glue that essentially holds the whole landscape together, especially regarding pharma and clinical research.  Each sector relies on us in some form, or another! 

The one question that wouldn’t stop running through my mind was ‘How do they not see this?

The burning question now 14 months on from that is how are FibroFlutters representing and engaging with ‘all-stakeholders’ themselves.  After all it really would be rude of us to demand the industry to respect such a notion and for us not to return the favour and do it ourselves.


Who are your Stakeholders? is the question that I asked with frustration.

My hand was soon ‘erratically’ drawing circles on a piece of paper and asking the table who their stakeholders were, not before long Paul Simms, Chairman of eyeforpharma, was listening, joining in, and egging the participants on to answer my questions.  A few other tables began to join in.  WOW! I had captured an audience.  With a few prompts, and a few more anguished words we eventually had a model on paper representing patients in relation to their stakeholders.  My message had been pretty clear and relevant to all round-tables all day so you can imagine that by the time of that last table the frustration was eating me alive. 

The notion of using an all-stakeholder approach was brought to life that day and is probably one of the proudest achievements of mine that I will treasure for a very long time.  My first ever pharma conference and round-table so I was blown away to have given such a valuable suggestion that has been taken up by many sectors of the healthcare industries and #notjustpharma. It also introduced me to external advocacy and a way that I could represent FibroFlutters away from the computer screen, behind the scenes and actually make a difference by sharing patient voice.

The burning question now 14 months on from that is how are FibroFlutters representing and engaging with ‘all-stakeholders’ themselves.  After all it really would be rude of us to demand the industry to respect such a notion and for us not to return the favour and do it ourselves.

The following information is all taken from across our social media network to give you all an idea of how we are reaching a rich and varied readership from across the medical healthcare landscape, including pharma, research, health, charities & organisations, as well as patients, caregivers and professionals.


Page 1 – Setting the scene

Page 2 – Let’s take a geographical look at our ‘Nuzzel Newsletter’ viewers on ‘Linked In’, their occupations and even see a list of a few company’s that have been taking a peek.

Page 3 – FibroFlutters website locational statistics

Page 4 – Okay, it’s time to take a look at our Twitter statistics and see how they reflect our push for all stakeholder engagement and how we have grown over the years.

Page 5 – Closing conclusions & FibroFlutters Social Links

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