Words from our Director and Co-Founder | Editor in Chief

Being connected to all stakeholders, and welcoming everyone to our network #notjustpatients is a way to show that we can communicate with each other.  If it is possible share that… then collaborative work should also be possible. Of course this is all within our efforts to prove that a multidisciplinary approach to our healthcare is a viable, and much-needed request from chronic patients with multiple conditions, and co-morbidities, or, multi-morbidities. 

Having followers from across the globe gives us a global insight into how chronic life is the same all over the World. However, it must be noted that how we are treated and cared for is not the same in each country.

_{In the beginning}

I was so involved in building the infrastructure of FibroFlutters to begin with in 2014-15. We needed a proper communications system across all the social media platforms to keep in touch with each other. Not everyone was on Facebook, or twitter, in fact some didn’t even have e-mail access due to not affording a computer, or the internet bill. 

Accessibility was one of our main issues to address and we all lived regionally within the North East UK. Without knowing it I created a communications avenue across varying social media platforms. Back then, I called it our ‘Super Highway’. We already had a substantial following from America.

One main reason that our presence began on social media though, was for advocacy campaigning. Our network grew with other Fibromyalgia groups and chronic illness bloggers from across the globe, some of which are still with us today. However, after a few years it became apparent that online advocacy just wasn’t enough. If we wished for real change to occur then getting our voices heard would need new approaches and a much wider network. It was time to push forwards and expand ourselves. We had already embraced chronic illness as a tagline to replace fibromyalgia as a singular illness that we supported in 2015-16. We wanted people to know that we were not just a fibro group any more as we had developed, expanded and become multi-faceted.

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By 2017, I began to look at how to incorporate the research and pharma industries into our advocacy work, for instance, projecting our voices further to the outside world.

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_{Pharma taught us about Multi-channeling}

It took me 2 months of researching to spot that all stakeholders were working on these patient centered processes while I’d been designing a ‘Multidisciplinary Medical Center’.  Centers that would be utilised by all stakeholders so that patients had access to them all. We also considered how our data could be kept in one place and accessible to all parties through using data hubs. 

By 2018 we were speaking at pharma events with the first one being eyeforpharma Barcelona Conference. I headed there with co-founder Sonia Hawkins a patient and a caregiver. We learned that industry had been working towards patient centric ideals that kind of mirrored our multidisciplinary ideals. As well as that it came to light that I had created a multi-channeled network > our super highway! Our ideas were welcomed and so were we.

This led to our aim to become a true patient centric, patient-led, patient group. If we achieve this we believe it will help develop and increase patient empowerment and patient voice through better patient engagement. For instance, within the realms of research, healthcare providers, and pharma. It should also contribute towards bridging the current gap regarding ‘accessibility’ for patients. We believe that whilst building a communication avenue between patients, HCP’s and pharma, and all other stakeholders within the medical healthcare industry it is possible.

Naturally, I have steered FibroFlutters into the middle of all the stakeholders as if to draw them in towards us, and it is working too.

We use this network to do a lot of our advocacy work, but we also use it to network with other chronic lifers, and also people from within other areas of the medical healthcare industries. It all happened because of that initial communication problem that needed fixing and now we span the Globe with a fantastic presence from across the pond that matches that from here in the UK & Europe. This puts us in a rather unique position when it comes to #chronicillness and Rare Disease health / research / patient and pharma advocacy.

Encouraging our members / followers /readers to view themselves as ‘patients’ has often proved difficult, but industry has labelled us this way. No-one likes labels especially the chronically ill who have endured years of negative experiences. In fact I am under the impression that we don’t like it very much at all to be called ‘patients’.  I know that I don’t like it because I’m a patient 24/7 and I don’t need titles to remind me of that fact.  Everyone has a reason of sorts for these things, but the one to blame is that change scares people, the threat of change scares people, even though they shout for it.

_{Global Reach and Social Determinants of Health}

Our illnesses aren’t different because we live thousands of miles apart, but how medication policies work are what make it all different depending on whereabouts in the World that you live. Environmental factors, and economy, also play a huge role on healthcare across the globe. Access to care, is not easy everywhere, not cheap and in some countries just not available at all.

The treatments / medications are different from one country to the next. Drug pricing issues and the opioid crisis are affecting patients and causing many to take their own lives, which just shouldn’t be happening. People are being made homeless and going without pain medications , or other key medications due to poor patient access.

These issues have become more prevalent as a result of the Covid 19 pandemic as each country battles to still care for their sick and disabled whilst dealing with the infected populations. Drug shortages have occurred everywhere and access to care has been complicated global-wide.

In the UK we also left the EU and it has left many of us panicking about medication and treatment supplies as a consequence. Leaving the EU during a pandemic wasn’t planned of course, but it certainly was not good when we were under tremendous strain as it was.

_{It is important to mention these issues to get them noticed, and remembered.}

Third world countries don’t have the same accessibility to information and basic communication avenues. Networks like this open up opportunities for them to connect and gain insights into chronic health information. This website gets visitors from all over the globe looking for information. We are proof that there is a need, proof that they are seeking help and it is up to us as communities to hold out our hands and help where we can.

Sometimes, as communities we need to join forces. We will unite our voices and spread our campaigns across the World. If we want all stakeholders to get the message that we are sending then networks like ours are how we do it.

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_Education

• Education is just as important as campaigning, from all sides of the fence, and #notjustpatients should also be learning  in  order to keep a balanced progression.

• Education is important if stakeholders within the medical and healthcare industries wish to succeed in gaining ‘our trust’ enough to work with them. 

• Education is key to help everyone understand how the industry is changing and in what ways the changes will benefit all stakeholders.

One key problem that fits under the ‘education’ umbrella, and one that often get’s said to me, is that patients don’t understand all the different jargon’s. To be honest who can blame them. This isn’t just patients on meds with foggy brains either!

Working together united within the industry we can develop a better way to communicate without confusing each other. It is not just patients that become lost in the translation and this is more than evident when at events that are attended by varying stakeholders. Cross-functional working is becoming a normality so being able to understand each other is an important step to develop and nurture. Using multi-disciplined approaches and networks can be of great help with that!

It is time for a ‘Universal Language’ and put a stop to different ways of saying the same thing. It should now be possible to develop such a language using a ‘Multi-Stakeholder’ team of people. A team that of course would include patients and caregivers. Medical writers, scientists, doctors, nurses, academics, researchers and others from the worlds of pharma, medical, health and social care, digital health, drug development and even regulatory bodies.

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Industry will be using digitalised processes and systems to make a streamlined job of their work. The hope is that the transition into the new World of Digital Health will be a relatively smooth one.  It is already upon us all and the impact of COVID19 has forced digital transformation to the forefront.  Let’s face it, how many of you use health mapping apps, or apps that boost your mood and send you memes of positivity.   Artificial Intelligence in medicine and healthcare is advancing by means of technology for treatments, surgical procedures and research.

_{Importance of social media networks to industry}

As people from within the health and medical landscapes you have been wanting to know where to find us. We have told you that we live on social media and we have been misunderstood by many. The fact is that through connecting and contacting networks like ours you will open doors. You need to ‘engage’ in order to engage!

Patient engagement will never improve if you don’t accept that you need to embrace social media. The old adage of ‘it’s not what you know, but who you know’, should be at the forefront of your minds. It is called a network for a reason!

_{Communities and Empathetic environments}

Finally, it would be remiss to not mention the huge benefits of having a global reach with our multi-stakeholder network. The access to others with our conditions is key to our health management. Community support is well documented to help people when provided with empathetic environments. Communities provide spaces where they can speak freely about their lives with chronic and rare conditions. Consider those with rare, and ultra-rare diseases. Having access to networks such as this is the only way for them to find others with their conditions.