Rallying

The third Rallying to the Challenge meeting will be held in parallel with Grand Challenges in Parkinson’s Disease on Sept. 26-27, 2016 at Van Andel Institute in Grand Rapids, Mich.


2016 PRELIMINARY AGENDA

MONDAY, SEPT. 26, 2016

10:00 a.m.
Welcome film
Tom Isaacs—Co-founder, Parkinson’s Movement

10:15 a.m.
Why data, data, data?
An introduction to terminology
Dr. Jon Stamford—Co-founder, Parkinson’s Movement

10:30 a.m.
Presentation:  Health Confidence
Peter Schmidt, National Parkinson Foundation

11:00 a.m.
Break

11:20 a.m.
Genes and Parkinson’s—providing the answers or framing the questions?
Dr. John Hardy, University College London

11:50 a.m.
What data would improve health outcomes?
John Dean, Davis Phinney Foundation

12:20 p.m.
Lunch

12:35 p.m.
Lunch with the Laureate
Over lunch question-and-answer session with Nobel Laureate Dr. Paul Greengard
Chaired by Israel Robledo, Parkinson’s Movement

1:40 p.m.
2015 recap
What did we learn from Rallying to the Challenge 2015: Outcome Measures that makes the theme for Rallying to the Challenge 2016 so pertinent?
Jill Carson, Park’n’Go

2:10 p.m.
2016 survey findings
David Jones, Parkinson’s advocate
Richard Windle, Parkinson’s advocate

2:30 p.m.
Big Data
What questions do we want answered by Big Data? What are the most useful data needed that would improve a.) research and b.) care?
Brainstorm chaired by Dr. Jon Stamford and other Parkinson’s Movement representatives

3:00 p.m.
Break

3:20 p.m.
Small Data
Individual case studies for focus groups

  • What data is needed vs what data is offered and is engaging for people to give?
  • How we can collect relevant data from PWP with the quality and in the quantity required to allow experiences to drive the research agenda? How do we engage sufficient numbers of people with Parkinson’s in recording information about themselves?
  • What controls do we need in place?

4:20 p.m.
Feedback from focus groups

 

4:45 p.m.
Daily wrap-up
Steve DeWitte and Israel Robledo

5:00 p.m.
Day closes


TUESDAY, SEPT. 27, 2016

10:15 a.m.
Kick-off
Summary of activities: focus group feedback and brainstorm findings

10:30 a.m.
Opportunities and challenges arising from the Big Data explosion: Putting data to work for the benefit of patients
Neil Stokes, IBM

11:00 a.m.
Break

11:20 a.m.
Whose data? Ethical considerations around data collection, sharing, ownership and evaluation
Dr. Jon Stamford, Parkinson’s Movement

11:50 a.m.
Soapbox: matters arising
Speakers from the audience (a chance to raise issues not so far covered in the program)

12:30 p.m.
Lunch

12:45 p.m.
Panel discussion: All your questions answered (during lunch)
Dr. Patrik Brundin and  others

1:45 p.m.
Feedback presentation to Grand Challenges in Parkinson’s Disease: What data should we collect and how should that data be used?
Dr. Jon Stamford, David Jones, Richard Windle and others
NOTE: This session will take place in Tomatis Auditorium during the Grand Challenges in Parkinson’s Disease symposium

2:15 p.m.
Rallying to the Challenge meeting closes