Social Media&Rare Diseases
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Social Media and Rare Diseases Luis Fernandez Luque, PhD Student Norut Tromsø (Norway) Manuel Armayones Ruiz, PhD Grupo de Investigación Psinet- Universitat Oberta de Catalunya (Spain) President of Asociación Española de Síndrome de Lowe
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Presentation Luis Luque in IN3-UOC Seminar Research: Social Media and Rare Diseases: an opportunity for the long tail
Transcript of Social Media&Rare Diseases
Social Media and Rare Diseases
Luis Fernandez Luque, PhD StudentNorut Tromsø (Norway)
Manuel Armayones Ruiz, PhDGrupo de Investigación Psinet- Universitat Oberta de Catalunya (Spain)
President of Asociación Española de Síndrome de Lowe
Social Media and Rare Diseases
Social Media / Web 2.0
Social Media / Web 2.0
• Read and write– You can create
• Mass access• Share it!• Social platform• Everywhere: mobil• Long tail
Social Media / Web 2.0
• Read and write– You can create
• Mass access• Share it!• Social platform• Everywhere: mobil• Long tail
WEB SEARCH HEALTH INFORMATION
Kummervold PE, Chronaki CE, Lausen B, Prokosch H, Rasmussen J, Santana S, Staniszewski A, Wangberg SCeHealth Trends in Europe 2005-2007: A Population-Based SurveyJ Med Internet Res 2008;10(4):e42
Social Media / Web 2.0
• Read and write– You can create
• Mass access• Share it!• Social platform• Everywhere: mobil• Long tail
Social Media / Web 2.0
• Read and write– You can create
• Mass access• Share it!• Social platform• Everywhere: mobil• Long tail
Health Social Media
• Media: blogs, microblogs, videos, audio-podcast, forum.
• Online communities: PatientsLikeMe, forums• Virtual 3D worlds (second life)• Mobile/Tablet applications
Health Social Media• Media: blogs, microblogs, videos, audio-podcast,
forum. • Online communities: PatientsLikeMe, forums• Virtual 3D worlds (second life)• Mobile/Tablet applications
Health Social Media• Media: blogs, microblogs, videos, audio-podcast,
forum.– Sharing/Social
• Online communities: PatientsLikeMe, forums• Virtual 3D worlds (second life)• Mobile/Tablet applications
ePatientsEmpowered, Equipped, Enabled and Engaged
ePatients
Diario de Pedro
Motivations
http://www.slideshare.net/luis.luque/e-patientslideshare-5978788
Online communities
Sharing experience and support
Online communities
Sharing - PatientsLikeMe
Sharing - PatientsLikeMe
Sharing - PatientsLikeMe
Research - PatientsLikeMe
Research - PatientsLikeMe
Web Education and Portal
Health Information
Eurordis – multilingual portal
Orphanet – multilingual portal
Web Education: it works!
Web Education: it works!
Online videos
Websites are more than webs
YouTube
Health Promotion
Awareness – rare disseases
The “black/grey” social media
Not so easy….
Unhealthy 2.0. - ProAna
Hard to find good resources
Open questions
• Privacy• How to use properly Web 2.0 tools• Information overload• High speed innovation: new things every month• Effectiveness
Information Overload
• Teach health consumers• List of trusted Web 2.0
sources• Specialized retrieval tools for
Web 2.0 health information• Search engines• Recommender Systems
MyHealthVideosA recommender system of health videos
– predefined list of trusted YouTube channels– Recommendations based on
• users’ health and demographics (e.g. user health, user profile)
• the community (e.g. ratings)
Two versions:
• Diabetes video portal
• Rare Diseases video portal
MyHealthVideos
Some Research Questions
How can we encourage patients and researchers to work collaboratively against rare diseases?
What motivational strategies could encourage collaborative work (collective intelligence) of these groups? Could be the video a useful
tool?
How collaborative activities between patients and researchers and their coordination can be supported by means of computer systems?
Rare Diseases & Social Media
• National projects– Norwegian lottery, Norwegian Research Council
• International collaboration– 7th Framework program– My PhD
