RARE DISEASE COMMUNITIES
      A EURORDIS PROJECT: TOWARD AN ONLINE PATIENT COMMUNITY
                                    ...
The idea:
2


       An online social network for patients & carers living
        with Rare Disease to enable sharing of...
What this is not:
3


       A patient association website.
       A purely information website on a disease or
        ...
What this is:
4


       A Community for a group of people living with a
        rare disease.
       A place to share e...
The role of the patient
5
    organisation:
       Improved visibility for patient organisation.
           Display Logo...
The tools (part 1):
6


       A Community homepage
           Display latest activity in the community
       Informat...
The tools (part 2):
7


       Social Network
           Make friends based on shared interests
       Blog
          ...
8



    A Disease-
    specific
    community’s
    hompage
9



    An example
    information
    page
10



     Forum
11



     A person’s
     profile.

     This can be
     public/private or
     anonymous
The structure
12


                    Portal homepage

             Navigation

      Communities


     Tools
Basic principals
13


        Guaranteed by EURORDIS & NORD
          Website hosting and security
          Maintenanc...
Benefits of a multi-community portal?
14


        Patients are already sharing online via Facebook etc.
         Limited...
EURORDIS’ experience
15

        Mailing Lists for Rare diseases
            Started in 2005
            25 diseases in...
Soliciting patient participation
16

        Communication Based Assessment
            Interviews with patients to dete...
Participation of patients II
17


        Test the community
          Making     sure it lives up to expectation before...
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Christel Nourissier Rare Disease Communities Intro

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Christel Nourissier Rare Disease Communities Intro

  1. 1. RARE DISEASE COMMUNITIES A EURORDIS PROJECT: TOWARD AN ONLINE PATIENT COMMUNITY PORTAL FOR RARE DISEASES Christel Nourissier General Secretary, EURORDIS
  2. 2. The idea: 2  An online social network for patients & carers living with Rare Disease to enable sharing of experiences and access to quality information.
  3. 3. What this is not: 3  A patient association website.  A purely information website on a disease or treatment.  A disease awareness website.  Just another forum.
  4. 4. What this is: 4  A Community for a group of people living with a rare disease.  A place to share experiences on Quality of life & Social issues using new online tools  Goals  Patient 2 Patient / Care 2 Carer Practical Support  Patient’s learn to trust their experience: Empowerment  Participate in growing knowledge: Scientific Progress  Sourcing better information & expertise: Literacy  Invite consultation with external experts: Relationship Building
  5. 5. The role of the patient 5 organisation:  Improved visibility for patient organisation.  Display Logo & contact details  Link to association’s own website  Play a role in communicating to the community.  Dedicated blog written by patient organisation  Information  Research news  Policy developments  Events  Play a role in governance of the community.  Recruiting Moderators & Volunteers
  6. 6. The tools (part 1): 6  A Community homepage  Display latest activity in the community  Information pages written by experts & patients  Based on aggregate knowledge in forums & blogs  Forums  Classified sharing (moderated), public or private  Mailing-List  Private email list (moderated)  Testimonies  Share stories in photo, video or text
  7. 7. The tools (part 2): 7  Social Network  Make friends based on shared interests  Blog  An internet diary to document living with a disease (natural history)  RSS Feeds  A “pipeline” for importing quality information  Bookmarks  Share your most commonly visited websites with others
  8. 8. 8 A Disease- specific community’s hompage
  9. 9. 9 An example information page
  10. 10. 10 Forum
  11. 11. 11 A person’s profile. This can be public/private or anonymous
  12. 12. The structure 12 Portal homepage Navigation Communities Tools
  13. 13. Basic principals 13  Guaranteed by EURORDIS & NORD  Website hosting and security  Maintenance and long-term development  Support staff  Governance (linked to patient organisations and patients)  Each community built in consultation with patients  Pilot phase with 4 disease communities: launch Nov 09  Financed by European Commission, the French Telethon (AFM) and the French Federation of Pharmaceuticals (LEEM).
  14. 14. Benefits of a multi-community portal? 14  Patients are already sharing online via Facebook etc. Limited in its potential for the advancement of knowledge.  Moderators will read all exchanges and write synthesis articles  A portal guaranteed by EURORDIS & NORD protects the voice of patients from purely commercial interests.  Negotiate the best kind of partnerships with research, technology partners etc to effect maximum benefit for greatest number of patients.  Stop re-inventing the wheel. Concentrate efforts.
  15. 15. EURORDIS’ experience 15  Mailing Lists for Rare diseases  Started in 2005  25 diseases in 2008  870 subscribers  Research trip to USA  Meetings with leaders such as PatientsLikeMe.com, WebMD.com, American Cancer Society  Annual EURORDIS Conference – May 2009  Invited participation of successful models: duchenneconnect.org  Partnership with data-mining technology: bridge with research  Lessons Learned  Each community is different, therefore demands individual treatment when building an online community.  EURORDIS Charter of Good Practice in Online Community governance.
  16. 16. Soliciting patient participation 16  Communication Based Assessment  Interviews with patients to determine where patients already source their information (what websites, Journals etc..)  What are the subjects & themes that the community needs to talk about i.e. a kind of table of contents?  What design, look-feel, colors would promote adoption & adhesion?  Recruitment and follow-up support  Recruitment and training of a team of patient or carer volunteers  Administrator  Information manager  Host(s)  Moderators x 3 or4 (forums mailing-lists)
  17. 17. Participation of patients II 17  Test the community  Making sure it lives up to expectation before releasing to all patients  Launch (Nov. 2009)  PHASE 1: Create start-up content to launch discussions  PHASE 2: Communicate to larger community of patients to promote participation.

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