Patients’ corner: Carole Scrafton and FibroFlutters, patients advocacy organisation

At The Future of Healthcare, we had the pleasure to e-meet Carole Scrafton, founder of the Patients Advocacy Organisation FibroFlutters. Carole explained the history behind FibroFlutters and expressed her thoughts about how patients are impacted by Corona, patient empowerment and Pharma companies communication to patients.

1. Can you tell me more about FibroFlutters?
2. What do you offer to patients? Can you give me an example?
3. What do you think about the current situation? What will be the impacts for patients?
4. Do you think pharma companies give enough importance to patient empowerment? Do you think it improved these lasts years? 
5. What could pharma improve in their communication to patients?

1. Can you tell me more about FibroFlutters?

A little back history… where did we come from? And why?

 I was approached a couple of times about the idea of setting up a group for Fibromyalgia, so, May 12th International Awareness Day for Fibromyalgia 2014 FibroFlutters was born under the c/o a fibromyalgia charity called ‘FibroAction’ now Fibromyalgia Action (FMAUK) and mental Health charity ‘Sunderland Mind’.

As a condition that affects thousands of people in the UK, and millions across the globe, raising awareness about fibromyalgia and how it affects the people who live with it is important. It is important to me as CEO of FibroFlutters too, to help get the message out there on behalf of those who do not have a voice to do it themselves.

Myself, and co-founder both got diagnosed with fibromyalgia and a rare genetic connective tissue disorder Ehlers Danlos Syndrome (EDS)  in 2013, and although FF was set up to fill a void for Fibromyalgia, which was an unclassified condition, we decided we needed to meet our own needs having rare genetic connective tissue disorders.

In present day 2020 FF is a local support group of which there are 5 founding members including myself, and then an online patient support and advocacy organisation that I am CEO of.  It operates across a network of social media channels that includes our website.  

We have an aim to help develop, nurture, and help to create a multidisciplinary approach to all aspects of medical healthcare so that chronic illness and rare patients can receive the type of care and treatments that they need.

2. What do you offer to patients? Can you give me an example?

I can tell you that when we started out, we ran informal monthly meetups so that people locally could come and talk about their health and how it was affecting them.  Members also have access to mental health support through the charity mind and the city’s local branch.

All members have access to disease information that they request because we direct them towards credible resources, it would not be ethically or morally correct to send them anywhere else.

Our website as a portal for information, articles and general resources which was originally designed to become a repository and this year it is undergoing complete regeneration and redesign to match up with the things the organisation has developed to become.  Speaking of course about the expansion of our advocacy efforts from patients and health, research, and pharma, plus, with the addition of a new element to our branding.

Members get the opportunity to take part in research when it comes along, and it applies to them.

A communications avenue across social media that means they always have a port of contact 24 / 7 with other members and admins.  One of our other wishes has always been to give people the opportunity to share their experiences with others and know that  they are not alone, advice & share useful information & also to help raise awareness of our differing Chronic Illnesses and Rare Diseases.  

3. What do you think about the current situation? What will be the impacts for patients?

The industry is moving forwards into a new era, or ‘new normal’ as it the phrase has been coined.  Although, I feel that a lot of the smaller companies are going to be quite tentative about their futures because of the economic devastation that the Coronavirus Pandemic has caused.  

Regarding Pharma and drug development it has thrown companies into collaborative combat with companies who normally are against each other joining forces and it has given them a different type of energy and I think the spark to thrive will stick around after Covid19. 

Digital therapeutics is becoming more of a reality, also, if people cannot see how remote trials will work after this pandemic then they need their heads banging against a wall to wake them up.  The thing is technology has been created for remote trials and already underway and being tested, we will probably see more and more medical monitoring devices (like black boxes) appearing on the scene.  

Access to clinical trials ‘remotely’ is becoming a reality and this pandemic we are currently experiencing has brought such a process to the forefront due to patients being stuck at home and the era of virtual patient engagement is born.  It was something that was going to happen anyways, and it has just been forced to happen a lot faster as companies try to find that treatment or vaccine for Covid19.

Disease management has changed through telehealth, digital apps, digital health, and med tech devices. Even my GP surgery is operating a similar type service for basic appointments.  I have been forced to use the patient access system for ordering my repeat scripts but getting items that are not on repeat has been a nightmare!  Our surgery does not have a messaging service to send such requests and this works both ways because any alterations made by the GP to dosages etc involves the surgery having to call the patient.  So, there’s still room for improvement, at my surgery that is! 

From a medical perspective and pharma aspect virtual meetings inevitably make life for the patients much easier.  Whether, or not, the practice of virtual meetings will continue after the pandemic is a question for people to really consider.  In my opinion, before companies, doctors, hospitals etc decide to go back to normal they need to assess what the impact will be on their patients.  What benefits have been brought to both sides of the fence?  Is it worth continuing this new way of handling meetings and appointments with patients? If yes, why, and how?  What benefits does it bring to the company?  If pursuing the practice of Zoom meetings proves to be beneficial all round what will it mean towards a company’s responsibility rating?  All questions that I would be considering!

4. Do you think pharma companies give enough importance to patient empowerment? Do you think it improved these lasts years? 

As a patient who frequents varying webinars from within the medical and healthcare industries, I have seen evidence that companies are willing to make the right changes.  The problem, as far as I am concerned, is that they just do not know how.  There appears to be an increase of patient engagement and patient involvement within the bigger companies such as Janssen, Ipsen, Merck and UCB, for a few examples, who are really showing the way when it comes to patient empowerment and showing the World that they endorse it too.  

However, who are they creating the value for?


Or Patients??

Then it is important to assess ‘what is that value that they are creating?’, and, ‘what exactly is its impact on patient’s healthcare and wellbeing?’.   Then I would ask ‘What is the impact for the company?’.  I am not sure whether impact and value creation is primarily for the patient, or whether companies always put business first?

Of course, it has improved, the drug development side of the pharma industry needed to approach patients to figure out how to improve trial recruitment and retainment.  In order to figure out better clinical trial processes and designs, pharma needed to let patients in and collaborate.  

Patient organisations and patient advocates are a great way for pharma to get into empowering patients and many companies are accepting this now.  What better way to recruit for trials than do go to the source?  The problem has always been that they were not looking in right places.  However, with the rise of patient groups on social media it became easier to locate patients, however, pharma was reluctant to embrace social media into their business practices.  How could they implement it?  What exactly were they implementing?  What was a social media platform / network?  Could company employees persuade their managers that new business models were needed? Models that included social media for marketing and networking purposes. 

The next subject to broach regarding the improvement of patient empowerment in the pharma industry is that of ‘multi-stakeholders’, ‘cross-networking’ and becoming ‘cross-functional’.  Patient empowerment appears to have developed into something even greater through companies beginning to value patients as people.  Then it became apparent that everyone is a patient so stepping into the shoes of a patient to understand what their unmet needs were became a sensible thing to consider.  What was an even better idea was to collaborate with a mix of stakeholders, a mix of medical, clinical and pharma too!  That whole multi-disciplinary perspective that I have been driving forwards for the last 5 years appears to be developing, and whether you call multi-disciplinary, patient-centricity, cross-functional or anything else, they all mean the same thing to me.

Companies are not just becoming ‘patient centric’, they are becoming ‘human centric’, ‘customer centric’, person centric’ and I’ve even recently seen ‘data centric’.  Putting patients first is well and deeply embedded in my opinion, but as for physical practices there is a very long way to go before anyone can claim to be fully supporting patient engagement, patient centricity or patient empowerment.

5. What could pharma improve in their communication to patients?

Written communication: This is a really poignant question to ask me because as far as communicating with patients goes it is still way off the mark.  What the communication experts within the pharma and research / academia industries believe to be the essence of ‘health literacy’ is not what patient communities mean when they say ‘please change the language and the way that you communicate.  It is not about ‘dumbing’ it down, but rather using better methods of giving us the information, especially in this digital age.  People are so involved with what is being preached as the meaning for ‘health literacy’ that they fail to see the wood for the trees.  It is time to get with the program this is 2020 and the creative art of communication has become a wonderful world of choices and digital applications to suit people of all types and ages.

One way to look at written communication is to keep in your mind that you are writing for people who read tabloid newspapers because they break down the news into easy digestible pieces that do not hurt the head.  It is not because they are illiterate, it is just easier to understand without all the jargons and industry-based language.  The document ends up four times longer than is needed to get the point across, and the reader loses interest and focus, why? Well the same as with videos we end up have to start reading it umpteen time over and to be honest most patients give up before they even get halfway through the article / document.

There is also the choice of digital health apps that help the patient in many ways to learn how to manage their medications and illness.  Gives them links for support and information.  These types of apps already exist so when writing documents, it might be useful to look at how these apps work and try to create something more digital instead. 

Of course, there is the issue of the genre of patient who is not computer, or internet, literate but maybe HCP’s could be involved in teaching a patient how to use an app that is for the medication and/or illness that could be used when they prescribe and diagnose..

Next, drug development:  Virtual Trials have recently become hot-topic and were before covid-19, the pandemic has just brought the subject to the forefront as the world tries to find a vaccine and treatment for the virus.  With new medical devices that connect patients to the pharma companies feeding them the data they require it means that patients can still take part in clinical trials who live in remote areas and cut out the travelling.  In America you are talking thousands not hundreds of miles to get to a trial location.  A patient can register all kinds of health information these days and data policies providing they can share it back to doctors, hospitals and institutions too.  Connecting the dots and bridging the gaps within the communication of data is now becoming easier as technology advances and regulatory aspects get addressed.  

However, there is still a long way to go yet because trust is still a big issue for patients when it comes to pharma!

Carole Scrafton

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