RRI in the health Industry Brussels 18 May 2017 Citizen Engagement for Better Innovation Maria Zolotonosa Ecsite
Overview of presentation • Sparks project • 3 examples of citizens working with industry 2 WWW.SPARKSPROJECT.EU
Sparks in a nutshell Sparks is about promoting and communicating the concept of RRI to citizens. With a focus on technology shifts in healthcare 3 WWW.SPARKSPROJECT.EU
Beyond the Lab: the DIY Science Revolution 4 WWW.SPARKSPROJECT.EU
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 5 WWW.SPARKSPROJECT.EU
Participatory activities • Reversed Science Café • Science Espressos • Pop-up science shop • Scenario workshop • Hackathons 6 WWW.SPARKSPROJECT.EU
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. 7 WWW.SPARKSPROJECT.EU
Example 1: DIÁLISIS 24H APP Patients involvement Before development: • Patients were asked about their daily routines/diets/habits • Patients were asked about their needs 8 WWW.SPARKSPROJECT.EU
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 9 WWW.SPARKSPROJECT.EU
Example 1: DIÁLISIS 24H APP Outcomes: • 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 10 WWW.SPARKSPROJECT.EU
Example 2: hackathon leading to research project Challenge: To improve a surgical procedure performed in order to save the lives of fetus affected by congenital diaphragmatic hernia. Currently requires two surgeries. 11 WWW.SPARKSPROJECT.EU
Example 2: hackathon leading to research project Process: • Copernicus science centre organised a hakathon • Doctors, designers, engineers, material scientists got together • Non-formal setting fosters creativity and experimentation 12 WWW.SPARKSPROJECT.EU
Example 2: hackathon leading to research project Outcomes • 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 13 WWW.SPARKSPROJECT.EU
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. 14 WWW.SPARKSPROJECT.EU
Example 3: The expert patient Lead Patients project • 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? 15 WWW.SPARKSPROJECT.EU
Example 3: The expert patient Main learnings • 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 16 WWW.SPARKSPROJECT.EU
Thank you! Maria Zolotonosa mzolotonosa@ecsite.eu 17 WWW.SPARKSPROJECT.EU
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