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Citizen participation in science

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lorenzo Del Savio

on 30 January 2015

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Transcript of Citizen participation in science

The map
Citizen participation in science and technology
Participant-led / apomediated research ??
Citizen Science
Consensus conferences
Dynamic consent tools
social networking
Genomes Unzipped is a collaborative blog about personal genomics. Our goal is to provide genetic testing consumers with independent and informed analysis of developments in the field of genetics and the genetic testing industry.
It gives customers the opportunity to contribute their genetic test results to research studies of their choosing and to be involved in specific online research projects
Imagine patients around the world coming together to share quantitative information on over 500 medical conditions. They talk about sensitive symptoms and compare which treatments work best for them. They track their health. New research discoveries are made based on the patient-contributed data
"patients can share and learn from real-world, outcome-based health data. We’ve also centered our business around these values by aligning patient and industry interests through data-sharing partnerships. We work with trusted nonprofit, research and industry Partners who use this health data to improve products, services and care for patients.
Our first product is a platform for group health science, enabling participants to design and operate scientific health studies. A form of crowd-sourced clinical trials.
to create a wide social network to connect patients and enable sharing of solutions, treatments, devices, and other relevant knowledge. The result is Patient Innovation, a place where patients and those who care about them can share and access useful and otherwise unknown solutions to cope with their diseases. But we wish to go even further. We want the medical and research communities on board, giving feedback and contributing towards what we expect will become a virtual incubator for solutions that can be developed to answer patients' needs.
Smart Patients is an online community where patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience.
Transparency Life Sciences is the world’s first drug development company based on open innovation. The company is harnessing crowdsourcing and mobile health technology to develop promising drugs for unmet medical needs with unprecedented efficiency and productivity.
"Your personalized uBiome web account provides secure and easy access to your information. You will be able to design your own experiments. Find out how you compare to the healthy, vegans, paleo, overweight, heavy drinkers. Even how you compare to yourself over time! "
crowdfunding science
Science shops
community epidemiology
participant-centric initiatives
citizen powered research
Full transcript