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Can The Public Do Their Own Trials Online? 1 Amy Price Public Led Online Trials (PLOT)

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Page 1: ThinkWell 2013

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Can The Public Do Their Own Trials Online?

Amy Price

Public Led Online Trials (PLOT)

Page 2: ThinkWell 2013

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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

Page 3: ThinkWell 2013

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.

Page 4: ThinkWell 2013

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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

Page 5: ThinkWell 2013

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Application Requires Preparation

Amy Price

Real Public Research is Active and informed Decision-Making

Page 6: ThinkWell 2013

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Learning is a Team Function

Learn Research Interactively Choose the Question and the Involvement

Amy Price

Page 7: ThinkWell 2013

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?

Page 8: ThinkWell 2013

Here is where we start

Project plan- Pilot study protocol

International online

collaboration

Steering group

Funding

Amy Price

Page 9: ThinkWell 2013

TRIALS STEERING GROUP

Amy Price

Page 10: ThinkWell 2013

Professor Mike Clarke

PLOT Methodology Trials Advisor

Amy Price

Page 11: ThinkWell 2013

Professor Lelia Duley

PLOT Chief Clinical Trials Lead

Director, Nottingham Clinical Trials Unit, Faculty of Medicine & Health Sciences

Amy Price

Page 12: ThinkWell 2013

Amy Price

Dr. Eric T MeyerPLOT Embedded Research Advisor

Page 13: ThinkWell 2013

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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

Page 15: ThinkWell 2013

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

Page 16: ThinkWell 2013

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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

Page 17: ThinkWell 2013

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Two Week Feasibility Water intake and Headache RCT

Amy Price ThinkWell and Zooniverse YES WE CAN!

Page 18: ThinkWell 2013

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Two Week Feasibility Water intake and Headache RCT

Amy Price ThinkWell and Zooniverse YES WE CAN!

Page 19: ThinkWell 2013

.5

1

5 76 8

Join inresearch

to findout!

?How much water do I drink?

2

2

2

1

3 4

1 3 4

Forgot? Drink the extra when you remember

=500ml

=120ml

=1L

=2L

Page 20: ThinkWell 2013

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

Page 22: ThinkWell 2013

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.

Page 23: ThinkWell 2013

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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

Page 24: ThinkWell 2013

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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

Page 25: ThinkWell 2013

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

Page 26: ThinkWell 2013

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ThinkWell Public Led Online Trials

Building Research With You

Courage Grows Where Encouragement is Shared

Page 27: ThinkWell 2013

ThinkWell

Richard Branson Says Screw it JUST DO IT!

Page 28: ThinkWell 2013

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Together We Can

MAKE RESEARCH FUN

Help ThinkWell Make Fun Research Public Led

Page 29: ThinkWell 2013

THANK YOU EBHC

Amy Price