Role Playing to Improve Access to Therapies

Simulation activities bring multi-stakeholders together at #RareEU2016  

Y. le Cam opens #RareEU2016 in Brussels. Excellent turnout, 300 committed to Orphan Products @eurordis @vbottarelli pic.twitter.com/sXTjiHg07T

— RD-Action Policy (@RareDiseasesEU) 24 February 2016

Rare Disease Day, which was started in 2008 by EURORDIS (the European Organization for Rare Diseases), has grown to include participation from around the world. This year’s activities included a symposium in Brussels on improving access to rare disease therapies. While there are over 7,000 unique rare diseases identified, the vast majority of rare disease patients face limited to no treatment options and significant inequities in accessing care. In order to address these life threatening challenges, symposium organizers intentionally brought together stakeholders from diverse backgrounds, including patient leaders. The event focused on the European landscape but attracted a large number of representatives from outside the European Union. It has always been to the benefit of the rare disease community to collaborate globally and EURORDIS continues to lead the way, with events like the symposium and the recent launch of the Rare Diseases International (RDI) global alliance.

The Multi-stakeholder Symposium on Improving Patient Access to Rare Disease Therapies offered an inspiring lineup of speakers and panelists who eloquently highlighted best practices and broadened the understanding of what health technology assessment (HTA) means in action. Throughout the conference there were repeated calls to ensure that patients remain at the centre of developments and recognition that patient stories are critical to making good decisions in advancing therapies. The role of the Internet and new data management technologies were also promoted as key for gathering input from patients and increasing collaboration potential.

"It's important to look at #raredisease not only from the medical side but also from social side" @V_Andriukaitis #RareEU2016 @eurordis

— Raquel Castro (@castrorakel) 24 February 2016

Right words aside, the inclusion of simulation exercises is what brought the themes of the conference to life. Role playing sessions involved all attendees and gave everyone the chance to practice working together on a challenge. Simulations also let participants take on roles different from the ones they are typically responsible for playing. I played the part of decision maker and got to evaluate pricing and reimbursement of health technologies on behalf of the public plan. It was a real thrill to be given a voting button and a level of power I’m unaccustomed to as a patient. At the same time, I also felt frustrated by the limited information I received to make important decisions and the time restraints placed on getting to a final decision.

@RareDiseasesEU Indeed, putting ourselves in the shoes of payers is instructive and challenging ! #RareEU2016 https://t.co/tzsayoZ2yK

— Valentina Bottarelli (@vbottarelli) 25 February 2016

Of course these scenarios were just games, but playing left me with greater awareness of the quality of input needed from patients, to ensure decision makers can take this perspective properly into account. I also thought a lot about how difficult it must be for decision makers, to open themselves, to listen to stories from patients, while knowing that they aren’t in a position to always vote in favour of what patients want and need. My takeaway from the symposium was greater empathy, for ALL the different players, working to make access to rare disease therapies viable. Patients should be at the centre but there are many voices that need to be heard, if we want to move forward together, to improve the lives of rare disease patients.

.@avrilbdaly at #RareEU2016 "Value of a medicine means something different to everyone, but we must keep in mind what is value for PATIENTS"

— Rare Diseases Europe (@eurordis) 25 February 2016

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If you missed the #RareEU2016 symposium, you can now watch the recording on YouTube. You can also access the one hour webinar that was offered pre-symposium as a practical introduction to health technology assessment (HTA).  

Find Tips for Sharing Your Rare Disease Day Story

Rare Disease Day is coming up, February 29th, 2016. This is a great time of year to join together with others from the rare disease community all over the world and contribute your rare disease story of what it means to live with a rare disease. Fittingly, the theme for this year's event is patient voice.

If you are looking for tips on how to share your story with impact, especially using social media to spread your message, watch these two recent webinars:

• RARE Webinar: World Rare Disease Day 2016 Planning presented by Global Genes

• Maximising Social Media around Rare Disease Day presented by RareConnect, EURORDIS 

You can contribute your story to the official Rare Disease Day Website or visit the My Normal Resources Page for a full list of places to share your rare disease story online.

ECRD Attendance Opens Door to Narrative Medicine

My ECRD Berlin 2014 Word Cloud

Sponsored by the National Gaucher Foundation of Canada, I had the recent opportunity of attending the large European Conference on Rare Diseases, held in Berlin this time. One of the reasons I was attracted to the conference was because it was broader than my regular Gaucher disease interactions, in the North American context, even broader still than the lysosomal storage disorders umbrella I was accustomed to, yet somehow, I initially felt alone in the big room with 700 attendees. It took meeting members of the European Gaucher Alliance, during a poster session, to settle-in to the European landscape I was so eager to join. Meeting others with a shared medical experience facilitates getting comfortable in a new environment and quickly leads to rapid story swapping, where the head nods are sincere and you don’t have to keep stopping to explain yourself. I later realized, that it was my first time meeting in person other people living with Gaucher outside of Canada and the USA.

Of course this wasn’t just about Gaucher, and having a place to present my poster, “Storytelling for Health”, made it possible to connect with many people who expressed a genuine interest in the role of stories, beyond the typical lip service given to the need for patient voice. I was actually left with the strong conference impression, that in Europe, the patient community is in fact at the front and centre of the rare diseases movement, which is surprisingly not always the case. The opening plenary session presented a number of individual patient video stories to illustrate the key conference themes that would be discussed. There was also not just strong attendance from patient organizations, including patients and caregivers, but also many speakers from the patient community, with a variety of relevant workshop topics to select from, versus the typical single non-scientific option (lack of option). Slides from all the presentations have now been made available on the conference website. This is an incredible offering for those who were unable to attend or, if like me, you found sessions of great interest to be overlapping in the scheduling. Many of the posters presented are also accessible online.

With so much post conference information available on the Internet these days, I sometimes wonder if it’s worthwhile to actually attend conferences. From my perspective, I might never have found the narrative medicine field of study if I hadn’t been there, looking-out for such a thing. With my keen and vested interest in storytelling, I’m a bit embarrassed to admit that I knew nothing about this topic beforehand. Sometimes even Goggle isn’t enough to point us in the right direction and we need human guides instead. My guides to this new world came from the poster presenters who made specific mention of narrative medicine and offered inspiring real-world examples of this work within the rare disease community:
•    From Life Stories to the Healthcare System: Narrative Medicine and Rare Diseases 
•    Pegasus, a winged horse carries hopes for rare diseases 
•    The Videotale ’Con Gli Occhi Tuoi’ (Through Your Eyes): An Alternative Method of Communication in Rare Diseases 

Beyond a hunger to learn everything I can about narrative medicine, I also left the conference with a now treasured copy of the illustrated storybook, Mauricio of Uruguay, and with it, the fruitful introduction to the life, art and illness narrative of artist Mauricio Saravia. Don’t miss the incredible story of the boy who had to have the weeds inside his body pruned.
  
I’ll also add that, from awareness gained by conference attendance, I've signed up and started the online  European Patient Ambassador Program. This free educational program is great training for strengthening your voice as an informed patient advocate.

Many thanks to the National Gaucher Foundation of Canada for making this venture possible. 

-post by Emma Rooney 

ECRD Poster Presentation

Come check out the "Storytelling for Health" poster at the European Conference on Rare Diseases & Orphan Products (ECRD 2014). We'll be presenting as part of conference theme 2 (Knowledge Generation & Dissemination), during Friday's poster session (May 9th, 2014).

Download, print (8.5 x 11 inches), and share: 


    10 Ideas for Getting Started on Your Story

    Considerations for Organizations Seeking Real-Life Stories 

Thank you to SPIESZDESIGN for generously donating the creative design.