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TRANSCRIPT
Citizen Engagement for Better Innovation
Maria ZolotonosaEcsite
RRI in the health Industry
Brussels 18 May 2017
Overview of presentation
• Sparks project• 3 examples of citizens
working with industry
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Sparks in a nutshell
Sparks is about promoting and communicating the concept of RRI to citizens.
With a focus on technology shifts in healthcare
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Beyond the Lab: the DIY Science Revolution
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Beyond the Lab: the DIY Science Revolution
• Personal stories of ordinary citizens doing science outside the lab
• Topics: health hackers, DIY biologists and citizen scientists
• Artworks • Local RRI case studies
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Participatory activities
• Reversed Science Café• Science Espressos• Pop-up science shop• Scenario workshop• Hackathons
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Example 1: DIÁLISIS 24H APP
Nurses and computer engineers, in collaboration with renal patients, joined forces to create an innovative mobile application aligned with the needs of dialysis patients.
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Example 1: DIÁLISIS 24H APP
Before development:• Patients were asked about
their daily routines/diets/habits
• Patients were asked about their needs
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Patients involvement
Example 1: DIÁLISIS 24H APP
During development:• Patients were involved in
testing the app and providing feedback
After development:• Patients were teaching other
patients to use the app
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Example 1: DIÁLISIS 24H APP
• The app is being used by many doctors as well as nutritionists in Andalucía
• App is being translated into English • Working with patients has been very rewarding
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Outcomes:
Example 2: hackathon leading to research project
To improve a surgical procedure performed in order to save the lives of fetus affected by congenital diaphragmatic hernia. Currently requires two surgeries.
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Challenge:
Example 2: hackathon leading to research project
• Copernicus science centreorganised a hakathon
• Doctors, designers, engineers, material scientists got together
• Non-formal setting fosters creativity and experimentation
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Process:
Example 2: hackathon leading to research project
• The winning project led towards a collaboration of a startup company with the university
• Currently the company is moving the research forward using its own resources
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Outcomes
Example 3: The expert patient
Sara Riggare was diagnosed with Parkinson’s disease in 2003. To stay fit and healthy, she has become an expert in her disease and shares her experiences with other patients online.
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Example 3: The expert patient
• Consortia of patient associations, hospitals, pharma company, electronics company
• Workshops with patients and other stakeholders
• How can we make healthcare more tuned to knowledgeable patients?
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Lead Patients project
Example 3: The expert patient
• Patients need to be involved from the start of the process
• Educating patients in self care is key
• The habit of doing things to patients rather than with patients is a big barrier
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Main learnings
