Web 2.0 and Rare diseases

David OZIELEURORDIS

www.eurordis.org

EURORDIS Online Training

2

Web 2.0

•2000� Blogs� Wikis� RSS,...

•Web 2.0� Tim O’Reilly

� “a set of economic, social, and technology trends ... characterized by user participation, openness, and network effects”

3

Part 1Health 2.0 and Medicine 2.0

4

Definition

•Services or tools

•Patients, consumers, health professionals,...

• Interaction•Real time information•Exchange•Share•Collaboration•User-Generated-Content

5

Web 2.0 tools : characteristics

• Interaction� Blogs

• Real time information

• Exchange

• Share

• Collaboration

• User-Generated-Content

6

Web 2.0 tools : characteristics

• Interaction

•Real time information

• RSS

• Exchange

• Share

• Collaboration

• User-Generated-Content

7

RSS (Really Simple Syndication)

8

Web 2.0 tools : characteristics

• Interaction

•Real time information

• Exchange• Mailing lists

• Share

• Collaboration

• User-Generated-Content

9

10

11

Web 2.0 tools : characteristics

• Interaction

•Real time information

• Exchange

• Share• Bookmarks

• Collaboration

• User-Generated-Content

12

Web 2.0 tools : characteristics

• Interaction

•Real time information

• Exchange

• Share

• Collaboration• Wikis

• User-Generated-Content

13

Wikis

• Collaborative projects� Wikipedia

• Quality• Closed-environment

14

Content and Quality

• User-generated content• Patients• Families• Associations,...

• Open editing process • Lack of expertise

• Self-regulation• Cancer mailing lists• Wikipedia vs Encyclopaedia Britannica

• Patients’ expertise + Health professionals’ knowled ge

15

Web 2.0 and innovation for healthcare

•New patterns in information access

•Reducing inequities

• Patient empowerment

• Social networking

16

Web 2.0 and innovation for healthcare

•New patterns in information access� Health professionals� Search the Web

� Web 2.0 tools

•Reducing inequities

• Patient empowerment

• Social networking

17

Web 2.0 and innovation for healthcare

•New patterns in information access

•Reducing inequities� Open access to information� RSS feeds� Less asymmetry / More transparency

• Patient empowerment

• Social networking

18

Web 2.0 and innovation for healthcare

• New patterns in information access

• Reducing inequities

• Patient empowerment� Easier access to information� Modified relationship with professionals

� Participatory medicine"networked patients shift from being mere passengers to responsible drivers of their health"

• Social networking

19

Web 2.0 and innovation for healthcare

•New patterns in information access

•Reducing inequities

•Patient empowerment

• Social networking� Social relationships / Common interests� No specific discussion topic

20

21

•Fundraising : 45 %

•Awareness : 38 %

•Support : 9 %

• Promote-a-site : 8 %

22

Part 2Social networks and Online communities

for rare diseases

23

Social networks vs Online communities

• “virtual social spaces where people come together t o get and give information or support, to learn or to mee t others”

• Online communities

• A precise objective

• Controlled registration : close group

• Different actors� Animators� Online patient helpers� ...