thinkwell 2013
TRANSCRIPT
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Can The Public Do Their Own Trials Online?
Amy Price
Public Led Online Trials (PLOT)
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Who are we?
The public is smart enough to master risk, odds and ethics while conducting research. They have untapped potential for improving decision-making, education, policy and advocacy. Join us to provide them with training and a voice
Dr. Amanda Burls
Presented in cooperation with ThinkWell and Zooniverse
Amy Price
3Amy Price
AIMS
AIMS To develop an online randomized controlled trial to assess shared decision making for better health and wellbeing. To accomplish this aim we will develop build and test the infrastructure for valid online trials.
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How To Get there From Here
Amy Price
“The most under-realized resource in research is the patient.”
The Public are smart and they are architect consultants in their own healthcare
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Application Requires Preparation
Amy Price
Real Public Research is Active and informed Decision-Making
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Learning is a Team Function
Learn Research Interactively Choose the Question and the Involvement
Amy Price
Where The Public Decides Research Priorities
DO IT TOGETHER YOUR WAY!
Choose topic
Hands On
learning
Do The Research
• Bio-Feedback for Pain
• Aging without Alzheimer’s Disease
• Drinking water is it a weight loss tool?
Here is where we start
Project plan- Pilot study protocol
International online
collaboration
Steering group
Funding
Amy Price
TRIALS STEERING GROUP
Amy Price
Professor Mike Clarke
PLOT Methodology Trials Advisor
Amy Price
Professor Lelia Duley
PLOT Chief Clinical Trials Lead
Director, Nottingham Clinical Trials Unit, Faculty of Medicine & Health Sciences
Amy Price
Amy Price
Dr. Eric T MeyerPLOT Embedded Research Advisor
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Zooniverse Provides Prime the Pump Funding
Amy Price
Dr. Chris Lintott
ThinkWell and Zooniverse YES WE CAN!
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Cycle of Knowledge
Question
Find Answers
Priorities
Design
Do Research
Analysis
Make an Informed Choice
“The mind is not a vessel to be filled, but a fire to be kindled.” ― Plutarch
Amy Price
Join The Headache and Water PLOT-IT Research Trial
Tell us about you
Trial information
Consent
Tasks
What’s in it for me
Amy Price
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Should we drink extra water?And if so, how much?
Join inresearch
to findout!
?You expressed interest in headaches and drinking extra water
Amy Price
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Two Week Feasibility Water intake and Headache RCT
Amy Price ThinkWell and Zooniverse YES WE CAN!
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Two Week Feasibility Water intake and Headache RCT
Amy Price ThinkWell and Zooniverse YES WE CAN!
.5
1
5 76 8
Join inresearch
to findout!
?How much water do I drink?
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2
2
1
3 4
1 3 4
Forgot? Drink the extra when you remember
=500ml
=120ml
=1L
=2L
At ThinkWell The Public Does Research
ThinkWell Transformation In Health Research
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Input From Non Compliant Is Important too
Amy Price Embedded and qualitative Research will Deepen What we Know
ThinkWell Where Public Applies Research
ThinkWellApplication Requires Preparation
The application of what we know already will have a bigger impact on health and disease than any drug or technology likely to be introduced in the next decade.
Sir Muir Gray.
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Failure is an event not an identity
The miracle is not that I finished but that I had the courage to start - J Bingham
Amy Price
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Embrace The Shake
Paralyzed by choice
Be limited to be limitless
Why forced destruction
Creative thinking
within the box
Public Led Research In Action
JOIN us to put the public at the heart of research
YESTERDAY YOU SAID TODAY JUST DO IT
The more distracted we are by future promises the less we focus on current need
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ThinkWell Public Led Online Trials
Building Research With You
Courage Grows Where Encouragement is Shared
ThinkWell
Richard Branson Says Screw it JUST DO IT!
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Together We Can
MAKE RESEARCH FUN
Help ThinkWell Make Fun Research Public Led
THANK YOU EBHC
Amy Price