51st ICCA Congress            How people living with         Parkinson’s disease built the          World Parkinson Congre...
The rise of patient power•What is the WPC?•Why we tried it in 2006. How’d we do?•Challenges & solutions•What good will com...
Why we tried it in 2006• Creates a spark. Allows delegates to leave the  comfort of their silos. WPCs are fully  integrate...
How’d we do?The 1st World Parkinson Congress (WPC 2006)Washington, DC (USA)  1,800 health professionals and researchers;  ...
Re-evaluate who your “experts” are…STOP thinking of these people as the only experts… International Congress and Conventio...
Re-evaluate who your “experts” are…START thinking of these people as experts too… International Congress and Convention As...
Challenges & New ApproachesChallenges & New Approaches*Program design*Registration*Industry guidelines and codes*Awareness...
Challenge – Program design IWPC includes PwPs in all decisions including programformat & design, speaker selection, and pr...
Challenge – Program design II              Scientific Abstracts                        &       Living with Parkinson’s Abs...
Challenge – Registration IRegistration : designed on a steep slidingscale of $150 - $600 for PwPs to doctorsearly on throu...
Challenge – Industry CodesConstantly moving landscape.Explore this issue before choosing a locationand look at what other ...
Challenge – Awareness of PDWPC legacy – in local city/host countryIn 2010, working with local partner, Parkinson’sUK, and ...
Challenge – Awareness of PDWPC legacy – beyond the meeting-inspired delegates leave rejuvenated with   scientific, care, a...
What good will come of it?• IMMEDIATELY : Speakers have to keep it real & focused.  Outstanding energy at meeting. Empower...
51st ICCA Congress                           Thank you!     Questions? Please email me     at eli@worldpdcongress.orgInter...
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How People Living With Parkinson's Disease Built The World Parkinson Congress #ICCA12 MONDAY 22/10/2012

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Presentation held at the 51st ICCA Congress which took place in San Juan, Puerto Rico from 20 - 24 October 2012. For more information on ICCA please visit www.iccaworld.com.

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  • Good morning. I’d like to start by thanking the ICCA leadership for the invitation to speak on a topic that I find exciting and inspring, the rise of patient power. My name… Here to talk today about the meeting I plan and how people living with Parkinson’s helped design and inspire it and continue to do so on a daily basis. Just out of curiosity, how many people in the room today know someone liiving or who has lived with Parkinson’s. Parkinson’s is on the rise. Because of the agining population, degenrative disease of the population on are the increase, meaning those of us working in in the health field
  • I have been asked to speak about ways to highlight the rise of the patient power in global meetings Have to stop thinking about patients as patients but turn this rounds. People who live with disease are sometimes the most knowledge people you'll meet. uSE them. Get them involved and ask them about their needs and thoughts on the meeting. Groups includng people with diseases in their meeting are growing. They include Internationa Aids Society, World Hemophilia Congress, World Huntington’s Congress, International Alzheimer’s Assocaition… and so on. We are not the first and I can only speak about our experience, but I suggest if this intersted you that you reach out to others and see what they are doing as well.
  • Not only are PwPs coming to the meeting to interact with others in the community BUT we launched a video competition in 2010 that received over 55 videos from 14 countries and reaise d tremendous amount of awareness on PD globally.
  • These are all WPC Ambassadors. This program was launched after the WPC 2010 when epople form all over the world contacted me asking what they could do and how they could contribute. The program was born organizally and has been an incredibly important part of the WPC from it’s inception. There 12 people, 11 of whom living with PD, come from 8 countries, and range in age from 30 years old to 56 years old. They dedicate hours to promoting the WPC in person, online, and throught their organziations and networks. These are just a few of the faces that represent experts on PD and represent members of the community who helped build the WPC. It’s these people who help put a face on Parkinson’s and remind us why we do what we do.
  • It’s not all a piece of cake and easy. We did and continue to face challenges. Do things bit by bit. Don’t overwhelm yourself with changes. Here are a few that we have dealt with and the solutions we have found
  • This is part of the WPC legacy, creating awareness about PD. Tell STORY about Crowne Plaza General Manager and his comments on wobbly people and people who slur. Tell STORY about Paris and his experience with the taxi driver from the airport to the convention center.
  • SENSEpark – 2.4 million Euro project. Doctr at WPC – inspried by Tom Isaacs, a key note speaker and young man living with Parkinsons’ invited Tom tp paticpate in a EU research project and together they have earned 2 millin Euros to launch this EU wide project on self-monidtoing parking’s symptom to be able to better design care models and assess needs more accurately. Sharon Daborn – launched first ever YOPD meeting in Australia Jin Kyoung – started first event Korean Patient organizaiton PT at WPC 2006 – inpsired by Meg Morris being at meeting
  • How People Living With Parkinson's Disease Built The World Parkinson Congress #ICCA12 MONDAY 22/10/2012

    1. 1. 51st ICCA Congress How people living with Parkinson’s disease built the World Parkinson CongressInternational Congress and Convention Association. Session sponsored by:Twitter: #ICCA12
    2. 2. The rise of patient power•What is the WPC?•Why we tried it in 2006. How’d we do?•Challenges & solutions•What good will come of itInternational Congress and Convention Association.Twitter: #ICCA12
    3. 3. Why we tried it in 2006• 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.International Congress and Convention Association.Twitter: #ICCA12
    4. 4. How’d we do?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 press3,150 delegates from 56 countriesThe 2nd World Parkinson Congress (WPC 2010)Glasgow, Scotland (UK) 1,690 clinicians & researchers; 626 RNs, PTs, OTs, SLPs, & nonprofit staff; 550 people with Parkinsons & care partners; 159 exhibitors & members of press3,025 delegates from 70 countriesInternational Congress and Convention Association.Twitter: #ICCA12
    5. 5. Re-evaluate who your “experts” are…STOP thinking of these people as the only experts… International Congress and Convention Association . Twitter: #ICCA12
    6. 6. Re-evaluate who your “experts” are…START thinking of these people as experts too… International Congress and Convention Association . Twitter: #ICCA12
    7. 7. Challenges & New ApproachesChallenges & New Approaches*Program design*Registration*Industry guidelines and codes*Awareness in convention center, local city &frequented venues 8International Congress and Convention Association.Twitter: #ICCA12
    8. 8. Challenge – Program design IWPC includes PwPs in all decisions including programformat & design, speaker selection, and presentations.All sessions are labeled to meet expectations. In 2010we used the following images to explain level of session:International Congress and Convention Association.Twitter: #ICCA12
    9. 9. Challenge – Program design II Scientific Abstracts & Living with Parkinson’s Abstracts Expanded how we share knowledge. Who holds this knowledge and who determines what is valuable?International Congress and Convention Association.Twitter: #ICCA12
    10. 10. Challenge – Registration IRegistration : designed on a steep slidingscale of $150 - $600 for PwPs to doctorsearly 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 offeredInternational Congress and Convention Association.Twitter: #ICCA12
    11. 11. Challenge – Industry CodesConstantly moving landscape.Explore this issue before choosing a locationand look at what other meetings have done.DC vs Glasgow.A unified voice can lobby to have rulesreconsidered, such as what the WorldFederation of Hemophilia did with theirmeeting in Paris this year.International Congress and Convention Association.Twitter: #ICCA12
    12. 12. Challenge – Awareness of PDWPC legacy – in local city/host countryIn 2010, working with local partner, Parkinson’sUK, and Glasgow City Marketing Bureau, heldfour 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, otherInternational Congress and Convention Association.Twitter: #ICCA12
    13. 13. Challenge – Awareness of PDWPC legacy – beyond the meeting-inspired delegates leave rejuvenated with scientific, care, and programmatic ideas-video competition raised awareness and continues to raise awareness of PDInternational Congress and Convention Association.Twitter: #ICCA12
    14. 14. What good will come of it?• 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. International Congress and Convention Association . Twitter: #ICCA12
    15. 15. 51st ICCA Congress Thank you! Questions? Please email me at eli@worldpdcongress.orgInternational Congress and Convention Association. Session sponsored by:Twitter: #ICCA12

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