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

Page 5

Closing conclusions (…on centricity!?)

The results in this mini ‘informal’ report are the precursors to stating recently that we’re becoming ‘flexibly-centric’ and able to work with each sector on different types of projects and campaigns, the results above could be said to prove it.

It is quite evident that we are reaching a varied audience that includes patients and professionals, which is really great to see in numbers and statistics. Some people need to see evidence before accepting something as being real. Personally, I can be one of those people and if my stats didn’t reflect what we were trying to achieve then maybe I wouldn’t be reporting our figures to you.

At the same time I am obliged to feed this information back out to our stakeholders, readers, followers and members so that you can see for yourselves whether or not we are in fact sticking to our Aims and Missions that have been laid by us as a Patient Group.

Aside from having a variable audience across our network we are also quite obviously achieving a Global reach as the stats from Nuzzel on Linked In, and our website, show above in our results. It is incredible to have such a reach across such a broad landscape of professional occupations within healthcare, pharma and research.

There isn’t much else that I can say really because it is up to you as our stakeholders, readers, followers, supporters and members to decide for yourselves whether, or not, we are achieving the aims of providing information and resources to a varied audience across the globe. Please don’t be shy and let me know what your thoughts are, get in touch, send me an e-mail. Remember, this is all works in progress and an ongoing project as we develop forwards, and also, that this is an informal report using samples of statistics not all of them.

In amongst those stakeholders are a number of great companies and organisations, people with varying occupations that all read our Nuzzel news, interact on Twitter and / or Linked In. The website is clearly growing in line with the normal growth expectancy and I hope that I can manage to keep that up for the next six months.

The commentary about my findings, and interpretations, of the statistics taken explained within the report, in my opinion, show a willingness from the differing medical healthcare industries to participate with us… as patients!

Patient engagement isn’t just about clinical trials, and learning their journeys for commercial purposes. Patient engagement can, and clearly does happen in other ways such as social media interaction. For instance companies reading my newsletters, the diversity of readers all interacting by doing so. Supporting our campaigns on Twitter… and connecting with us on Facebook, Pinterest & Instagram, also displays a certain level of engagement.

The website on WordPress has quite a diverse readership, but that is because I have deliberately designed it for the purpose of providing an information library for everyone to use. It is continuously growing, developing and redeveloping as the environment and chronic health landscape does, including all our / my external advocacy efforts and relationships with companies and organisations. We attract students, Company directors, clinical and academia, lab technicians, patients, doctors, consultants, nurses, and many many more stakeholders.

Again, we are open to everyone and #notjustpatients


Please remember that this a very informal report of just a few statistical samples and not full statistical analysis of the whole of our social media network.


Many thanks for taking the time out to read this informal report about FibroFlutters social media usage, results and numbers in relation to attaining, and reaching, an ‘all-stakeholder’ audience across the Globe





Locally we’re a Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK …
… but we also offer online support, advice and advocacy via our social media network , chronic illness portal, across the globe.



FibroFlutters continuously

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’m using a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!  

You all need to pitch in!!



FibroFlutters social links

Page 5