This year’s Rallying to the Challenge meeting will be held on 26th and 27th September 2016.
As usual it will be held in parallel with Grand Challenges in Parkinson’s conference at the Van Andel Research Institute, Grand Rapids. The theme for this year’s Grand Challenges meeting is genetics.
Rallying will focus on the wider issue of data: big data, small data, personal data, impersonal data, what’s useful and what’s not, and how data should be used.
Collecting information about our personal experiences can inspire greater accuracy and urgency in research and even shape scientific and clinical expertise. This not only redefines the research landscape but even more importantly helps to personalise Parkinson’s. However, one of the pressing issues that came out of Rallying 2015 was a need to define how data is used, who has access to it, and what level of control does a person have over their own data?
We believe it is hugely important that we define how we want our data to be used, particularly as there is growing pressure for legislation to be introduced to tell us how it will be used. We need our voices to be heard.
To address these issues we have created a new survey, the results of which will help inform the discussion and debate at the Rallying meeting this year. Please email pminfo@parkinsonsmovement.com if you would like to attend the meeting.
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?
What did we learn from Rallying to the Challenge: Outcome Measures (2015) that makes the theme for Rallying 2016 so pertinent?
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.
2016 survey findings
David Jones—Parkinson’s advocate
Richard Windle—Parkinson’s advocate
12:10 p.m.
Lunch
12:30 p.m.
Panel discussion: All your questions answered (during lunch)
Dr. Patrik Brundin and others
1:30 p.m.
Ray Dorsey navigates the measurement world in Parkinson’s
2:00 p.m.
What do we mean by 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
2:20 p.m.
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?
3:20 p.m.
Break
3:30 p.m.
Feedback from focus groups
4:15 p.m.
What data would improve health outcomes?
John Dean—Davis Phinney Foundation
5:00 p.m.
What data supports research into cures?
Panel discussion (chaired by Patrik Brundin, M.D., Ph.D.)
5:30 p.m.
Meeting closes
TUESDAY, SEPT. 27, 2016
9:00 a.m.
Welcome
9:15 a.m.
Motivation to contribute data
Speaker to be announced
9:50 a.m.
Individual classifiers of an individual’s Parkinson’s
Stephen Friend—Sage Bionetworks
10:30 a.m.
Summary of activities: Focus group feedback and brainstorm findings
11:00 a.m.
Break
11:20 a.m.
Ethical considerations around data collection, sharing, ownership and evaluation
Speaker to be announced
11:40 a.m.
Data ownership
Speaker to be announced
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
2:15 p.m.
Rallying to the Challenge meeting close
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