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September 2019
September was a very special month for me and one that will stay with me for a very long time. My attendance at the following two events marked a new direction not just for myself as an expert patient, but also for FibroFlutters and our mission to advance our appearance within the clinical research, patient engagement and rare disease arenas.
The only way to describe it is to say that my experiences showed me how much I matter, but how much my ideas, thoughts and general perceptions matter to those around us. Our ideals of a multi-disciplinary approach to medical healthcare within all aspects of the industries involved really do mean something to others. To hear how much work is developing to create new collaborative approaches to research was truly astounding, the commitment to it is true, genuine and unfaltering. Putting patients first as people was clear, compensating patients for their knowledge was clear, and making sure that engagement with patients was a priority regarding the future progress of pharma, medical and healthcare was definitely clear.
My closing statement of the PEOF19 conference tells it quite simply and you can watch that via the You Tube stream below. The industries involved in trying to better patient outcomes, create and develop better and more personalised medicines, find new treatments and work with patients as partners is definitely moving in the right direction.
Putting FibroFlutters within the rare disease arena has always been on our agenda and to be able to achieve that this year was a bonus. My aim for 2019 was to immerse myself amongst an all-stakeholder approach to our advocacy after stating ‘bluntly’ at the eyeforpharma conferences that pharma, research and healthcare needed to collaborate and also take multi-stakeholder approaches. The term ‘cross-functional’ is something that I needed to show I / we were doing ourselves because it is unfair to ask everyone else to do it and then not do it ourselves. Becoming ‘cross-industrial’ is something that I didn’t think I would see just yet, but it would appear that all sectors of the medical healthcare industries are listening and taking action so they are beginning to entwine as they begin to collaborate and co-create together. It would also appear that I have managed to achieve this as well.
It just so happened that Jo Balfour from the Cambridge rare Disease Network connected with me and invited me along to their event. A perfect opportunity to be a bit wild and spontaneous and just take action for a change. A decision that was definitely a good one and I discuss it below.
A new direction on the horizon for medical healthcare and pharma landscape perhaps?
Patient Engagement Open Forum 2019
The evening before the event began PFMD organised a special dinner for it’s members and those of us taking part in the event. This was a very fine time indeed knocking elbows with some very fine individuals, some that I had already met through the eyeforpharma events, but many of them were very new. A rather posh meal, fine dining and not really to my palate, but the company more than made up for that.
The event provided attendees with presentations of ongoing patient engagement projects that were being carried out around the world. A platform for people to showcase their patient engagement initiatives and projects. There were many interactive sessions / workshops too where attendees could get involved in the co-creation of the tools shaping the future of patient engagement. One of the ones I joined was about ‘Fair Market Value’ and it was rife with discussions, ideas, negatives and positives from multi-stakeholders. As patients we felt some of the statements were a little derogatising, but we knew that it was par for the course and not meant to offend. However it did raise our heckles into defensive mode to battle it out over the microphone… even me!
We of course were a part of the interactive session process by holding our workshop. There were other PFMD working groups also holding workshops, not just us so it was a fabulous team effort to showcase the work we had all been doing with PFMD. A link to our work is provided further down.
More information:
Chi Pakarinen (Organiser), Anne-Marie Hamoir, Bonaventure Ikediashi, Danielle Derijcke, – The Synergist & PFMD
Working Group 1, Core Group: Dawn Richards, Carole Scrafton / FibroFlutters, Katherine Deane (HSC – Staff), Natasha Ratcliffe, Oana BERNARD-POENARU , Oleksandr Gorbenko, Claire Nolan, patients, pharma & patient organisations
This was our presentation and workshop
https://patientengagementopenforum.org/docs/Workshop-1-PE-in-early-development.pdf
For all event highlights follow this link
Working Group 1 work is ongoing.
Working Group 6 work began after Brussels and is ongoing with a proposed workshop in Brussels early in 2020.
Rare Summit 2019 Patients as Partners / Cambridge Rare Disease Network
After my trip to Brussels for the PEOF 19 I headed straight to Cambridge, UK, for the Cambridge Rare Disease Network Rare Summit to hear and meet many influential patients and academics from the rare disease communities.
After an exhausting week attending the PEOF event, and all the travelling I’d done in one week, I chose to spend the weekend recuperating at the Wellcome Genome Campus where the Rare Summit was being held on the Monday 23rd September. I couldn’t have made a better decision. It was deserted because it was the weekend and I spent the most part being entertained by the campus squirrels during the day, and the campus bar in the evenings. One thing I was pleased about was that I was in my electric chair because this meant I could mooch about and enjoy the surroundings and I even went off campus for a drive to find a shop to buy in supplies of food. By the time people began to turn up on Sunday I was refreshed and ready for the event. It was really pleasant to meet Jo, her hubby and friends, including Paul Wicks, the evening before too.
This was my first Rare Disease event so it was a very special time for me and also a time to meet old friends like Alan Thomas from Ataxia & Me, and meet Jo Balfour who heads the Cambridge Rare Disease Network who I’d only spoken to via Linked In. To meet David Edward Rose and others from the Rare Revolution Magazine was also really fabulous. There were many other people at the event that helped to support my journey whilst being there with my disabilities.
One of the speakers was UK’s Minister for Innovation in Health, Baroness Nicola Blackwood.
“a passionate rare disease advocate and the minister leading on the ‘National Conversation’ which will gather the views of all stakeholders to set the priorities for the UK Rare Disease Strategy 2020 framework.”
WHAT MATTERS TO YOU?
WHAT MATTERS MOST?
WE NEED A NATIONAL DEBATE ON RARE DISEASES
https://camraredisease.org/raresummit19/ CRDN News
It truly was a very engaging day with a great Hackathon at the end to choose a research idea to propose to the Government on behalf of the Rare disease communities.
Read a review via this link
RARESummit 2019 – Patients as partners
You access the slides etc of the event via this link
It was an opportunity to mooch with fellow rare disease folks and to speak to people who really understand what it’s like to have a body like no-one else. Plus, to talk to people like Paul Wicks who I knew was going to be a key headlining speaker at London eyeforpharma Patient Summit the following month in October so it was good to meet him before then and introduce myself.
Statistical Viewpoint!
During 2019 I spent time checking the statistics across our social media network. It isn’t something that I had previously done to any great extent beyond the viewing numbers for the website. What intrigues me more than anything was the fact that I could see that I was in fact servicing multi-stakeholders with the news and information that I share. The following report explains in detail how my statistics show that and also the reach across the globe that my network for FibroFlutters has.
FibroFlutters Social Media health advocacy and all stakeholder approach to healthcare, across the globe – Peeking at the statistics!
FibroFlutters Social Media health advocacy and all stakeholder approach to healthcare, across the globe – Peeking at the statistics!
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