Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton


DAY 1 – 16th November 2018

Interactive  Roundtable sessions bringing patients and pharma together around one table

The idea behind these roundtables was to bring together pharma, patients and other key stakeholders “as a harmonised taskforce, ready to dig into the depths of each topic.” as described by eyeforpharma.

The roundtable design was one of such to encourage debate, learning from one another, but also to add that ‘jois-de vivre’ of face-to-face education from a mix of stakeholders across the medical healthcare industries.

Okay, what on earth does ‘interactive-roundtable’ mean?

That is a fair question that people from outside the ‘World of conferencing’ should be allowed to ask.  Admittedley, if you aren’t familiar with how these things are set-up, or work it can be a bit confusing if not explained to you.

It is actually a beneficial aspect to roundtables because it gives the attendees the opportunity to pose questions to the room via an ‘app’.  The questions come up on a big screen  and some of those questions are addressed, and hopefully, answered by experts, or patients, or patient experts that are hosting / chairing the session 


As a matter of fact the whole event was controlled via ‘Digitial App’ which, was quite an ‘innovative’ decision by eyeforpharma, but also one which came with it’s problems.  For instance a bit of tough luck for anyone that didn’t own a SmartPhone! 

There were times when trying to navigate my way around the system that I would miss parts of what was on stage, or give up looking because obviously it’s rude to not pay attention to the speakers.


Win patient Centricity Champions

Moderator: Veronica Foote
Head of Patient Relations
Communications Europe
Novartis Oncology

We took part in this roundtable as ‘Attendees’ representing patient, and carer, voices helping to provide ideas and input from our perspectives alongside some pharma executives.  Of course it was also an opportunity for me to gauge whereabouts pharma are with this topic on their agendas.  What types of things are they doing already? for instance, what things would they like to do but don’t know how to? many things to help us get a bigger picture.  It is important for me to know so that I can streamline my content better for them.

Education is a key element that we all recognise as being important so these roundtables are all part of our ‘communal’ learning as stakeholders.

It was very interesting how we became the focal point of the discussion very quickly and I was bombarded with questions, however so was Sonia, which was great because listening to carers is one of our biggest complaints and the fact that pharma don’t do it enough!  It truly did feel like I was under attack at one point needing to defend myself, but with no clue why!

One of the most cutting things, or questions, to hear from one of the executives was ‘why fibromyalgia?’ there’s not much we can do for that!  Why not focus more on the other rare conditions’

Well, they clearly hadn’t done their homework because FibroFlutters isn’t just for Fibromyalgia and hasn’t been for a couple of years.  It is no secret and was well announced when the changes occurred.  It felt like I was being chastised for a choice, a health representation choice just because fibromyalgia was the ‘initial’ reason behind the group / organisation origin.  For crying out loud go and read our About Us section, or, e-mail me if you want to know anything.
Besides which I wear my ‘zebra stripes’ with pride everywhere I hoof, so for someone to say such a thing to me about that really was quite insulting.  Apart from that, that executive brought fibromyalgia into the discussion… no-one else had.  Why feel the need to state the blooming obvious in such a manner to someone that didn’t need to be told it? Crikey the whole world knows that more in-depth research is required into fibromyalgia before anyone can start to design that magic cure fibromyalgia sufferers are craving all across the globe! I may be a novice at ‘pharma’ but I am not stupid!!  

It just goes to show that when looking for patient resources and places for patients to take part in trials that they need to do better research.  Okay, I say that based on one comment / question, but really?! a big mistake for that executive to make.  What was worse was not being able to get the message across during the roundtable.  I hope that we did because it is important for them to remember that we’re #notjustpatients, and the work that we do is quite vast, and varied, in relation to the World of #chronicillness per se.

Has pharma even considered the chance that patients will begin to start vetting them for reputability and whether they would entertain them?  I can honestly say that my answer would be no to anyone that doesn’t appear to be knowledgeable about the work that we do and what we represent.

I myself have a genetic connective tissue disorder along with varying musculoskeletal anomalies and the rare 6th vertebrae.  That is before you even start the rest of my huge list of health complaints and conditions.  Then consider adding another 3500- 5000 possibles from our followers and how many conditions that all adds up to!  A lot!!

So, What did we all have to contribute to the discussion and what were the key take-aways?

It was a very ‘resourceful’ discussion for me to hear, (as a patient Expert / Avocate / Ambassador and  Patient -Led Patient-Group Leader (PL-PGL)), what measures the directors had in place regarding  patient champions, where can they source them? how can they prove that they are including patients within their project agendas?

Useful to give as feedback to my fellow peers and Patient connections within the chronic illness communities across the globe.  It is important to recognise that a global approach can open up bigger patient pools for rare diseases, portals to patient communities are growing in number… and that is something that I can say to you all first-hand.

Why? > because they come through FibroFlutters e-mail inbox and I am currently working on listing them on our website.  There is a lot happening and it is a shame that the people who need to see it aren’t getting to.  It’s down to people like me, and my peers, to transfer all this information out to all other stakeholders, but especially patients.  It can be difficult and time consuming because of the language aspects, and jargon problems, but with collaboration and co-creation we can easily improve on that! Engaging and getting to work together and educate where needed to help pharma and patients develop those trusting relationships.  Patient champions, or not, really! any group leader should be treat with equal respect, we work hard at what we do!!

Some great examples we thought, especially the ‘Red chair’ aspect to give one example where in the meetings whoever is sitting in that red chair must speak from the patient / person perspective throughtout.  This is brilliant, however, it would be better if it was an actual patient  that was sat there!  Again, however, it is a fabulous idea that can be worked on to become something really beneficial for the inclusion of patient voice and is on that company’s agenda to do just that.

An Ipsen representative said working cross-functionally, whilst someone from Sanofi suggested bringing Patient advocates into the business framework / organisational structure. It was also brought into discussion that they shouldn’t just be looking at patients, but carer’s as well.

Another great suggestion was that the CEO, chief executives should provide authentic endorsements and embed them into their organisational structures, show some corporate responsibility that will hopefully help to re-build trust  between pharma and patients, after all that needs fixing first before any engaging should take place.

Infrastructure is obviously being considered which for me is a blessing to hear!  Naturally the red chair is a fabulous initiative also but again room for improvements, and being more responsible is also creeping into the eyeline as well now, something else I am pleased to see, and hear!

Finally, patient organisations should be included too, not just patient advocates.  This is a very good point to bring to the forefront as patient organisations have their own support groups, therefore accessibility to patient pools for research, clinical trials, focus groups, surveys, and most of all ‘real’ people, with real stories and experiences to share with you.  Creating bonds with patient groups and organisations also benfits them especially if you can negotiate terms of action with respect to compensation for those wthat participate.  The whole debate about how to do this is still ongoing but hopefully it shouldn’t be much longer.  However, compliance is the burning issue isn’t it, so maybe it could drag on for quite a while!… eek!!

Since returning from London I was invited to join a ‘Health related Communities Map’ where charities, and not-for-profits, can easily find each other.  Wowsers! imagine that!? having all of us on one map.  The details for this are listed on the last page of this mini-magazine alongside several links including the one to FibroFlutters profile on there. 

Wouldn’t something like this benefit pharma regarding platforms and ease of access to data pools.  Granted this map is for the UK, but it’s definitely something that pharma should be looking at for sourcing patients.  I am currently assisting with promoting it, encouraging groups and organisations to look into joining it. As we are growing we get requests all the time from people wanting to know about groups near them so this is a Godsend for FibroFlutters, and, I’m proud to work in alliance with ‘If Everyone Cares’ and ‘adoddle.org to get it up and running because it will make a lot of organisations happy to be able to find other groups.  What would make me even more proud would be to hear pharma say that they also like it!

I asked for data to be stored in one place this might be as close as you are going to get to it!  It’s all about perception, isn’t it?

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