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

Questions ?

Luis Fernandez Luque (luis.luque@norut.no)