how people living with parkinson's disease built the world parkinson congress #icca12 monday...

51st ICCA Congress

International Congress and Convention Association.

Twitter: #ICCA12

Session sponsored by:

How people living with Parkinson’s disease built the

World Parkinson Congress

International Congress and Convention Association.

Twitter: #ICCA12

•What is the WPC?

•Why we tried it in 2006. How’d we do?

•Challenges & solutions

•What good will come of it

The rise of patient power

International Congress and Convention Association.

Twitter: #ICCA12

• Creates a spark. Allows delegates to leave the comfort of their silos. WPCs are fully integrated with sessions open to everyone.

• Totally unique for most delegates to experience the cross pollination of “experts”.

• Puts a face on people with Parkinson’s.

• Help us to put ourselves out of business.

Why we tried it in 2006

International Congress and Convention Association.

Twitter: #ICCA12

The 1st World Parkinson Congress (WPC 2006)Washington, DC (USA) 1,800 health professionals and researchers; 1,100 people with Parkinson’s & care partners; 250 exhibitors and members of press

3,150 delegates from 56 countries

The 2nd World Parkinson Congress (WPC 2010)  Glasgow, Scotland (UK) 1,690 clinicians & researchers; 626 RNs, PTs, OTs, SLPs, & nonprofit staff; 550 people with Parkinson's & care partners; 159 exhibitors & members of press

3,025 delegates from 70 countries

How’d we do?

International Congress and Convention Association.

Twitter: #ICCA12

STOP thinking of these people as the only experts…

Re-evaluate who your “experts” are…

International Congress and Convention Association.

Twitter: #ICCA12

START thinking of these people as experts too…

Re-evaluate who your “experts” are…

International Congress and Convention Association.

Twitter: #ICCA12

Challenges & New Approaches

*Program design*Registration*Industry guidelines and codes*Awareness in convention center, local city & frequented venues

8

Challenges & New Approaches

International Congress and Convention Association.

Twitter: #ICCA12

WPC includes PwPs in all decisions including program format & design, speaker selection, and presentations.

All sessions are labeled to meet expectations. In 2010 we used the following images to explain level of session:

Challenge – Program design I

International Congress and Convention Association.

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Scientific Abstracts&

Living with Parkinson’s Abstracts

Expanded how we share knowledge. Who holds this knowledge and who determines

what is valuable?

Challenge – Program design II

International Congress and Convention Association.

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Registration : designed on a steep sliding scale of $150 - $600 for PwPs to doctors early on through late registration.

Registration fees for people with Parkinson’s, care partners are at two levels, full-priced ($300) and discounted ($150).

Travel stipends offered

Challenge – Registration I

International Congress and Convention Association.

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Constantly moving landscape.

Explore this issue before choosing a location and look at what other meetings have done. DC vs Glasgow.

A unified voice can lobby to have rules reconsidered, such as what the World Federation of Hemophilia did with their meeting in Paris this year.

Challenge – Industry Codes

International Congress and Convention Association.

Twitter: #ICCA12

WPC legacy – in local city/host country

In 2010, working with local partner, Parkinson’s UK, and Glasgow City Marketing Bureau, held four one hour trainings for 92 people. - 30 participants were in management- 56 participants were front of house staff- 6 participants were fire staff, tour guides, other

Challenge – Awareness of PD

International Congress and Convention Association.

Twitter: #ICCA12

WPC legacy – beyond the meeting

-inspired delegates leave rejuvenated with scientific, care, and programmatic ideas

-video competition raised awareness and continues to raise awareness of PD

Challenge – Awareness of PD

International Congress and Convention Association.

Twitter: #ICCA12

• IMMEDIATELY : Speakers have to keep it real & focused.

Outstanding energy at meeting. Empowered people living with Parkinson’s.

• LONG TERM : Help build an alliance between the key

stakeholders. Advance the science & care more rapidly. Put ourselves out of business.

What good will come of it?

51st ICCA Congress

International Congress and Convention Association.

Twitter: #ICCA12

Session sponsored by:

Thank you!

Questions? Please email me at eli@worldpdcongress.org