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NORD/EURORDIS ONLINE PATIENT COMMUNITIES

NORD/EURORDIS ONLINE PATIENT COMMUNITIES. Online Patient Communities. 2. rarediseasecommunities.org. The idea:. 4.

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NORD/EURORDIS ONLINE PATIENT COMMUNITIES

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  1. NORD/EURORDIS ONLINE PATIENT COMMUNITIES

  2. Online Patient Communities 2 rarediseasecommunities.org

  3. The idea: 4 • An online social network for patients & caregivers living with a rare disorder, to enable sharing of experiencesand access to quality information across diseases and symptoms.

  4. What Rare Disease Communities is: 5 • 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 PracticalSupport • Patient’s learn to trust their experience: Empowerment • Participate in growing knowledge: ScientificProgress • Sourcing better information & expertise: Literacy • Invite consultation with external experts: Relationship Building • Patient organizations work together on this project and communicate on possible future projects.

  5. What Rare Disease Communities is not: 6 • A patient association website. • A replacement for a patient association website. • A purely informational website on a disease or treatment. • A disease awareness website. • Just another forum.

  6. Basic principals 7 • 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, patient organizations, NORD, and Eurordis.

  7. The role of the patient organization: 8 • Improved visibility for patient organization. • Display Logo & contact details • Link to association’s own website • Play a role in communicating to the community. • Blog entries/Updates written by patient organization • Information • Research news • Policy developments • Events • Play a role in governance of the community. • Recruiting Moderators & Volunteers

  8. The tools: 9 • 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 • Private messaging option • Ability to contact other members through the site • Testimonies • Share stories in photo, video or text

  9. Benefits of a multi-community portal? 10 • 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.

  10. Oversight Monitored by patient advocates, patient organization representatives, and experts from within the specific disease community  This format will create a trusted safe space that can facilitate community building and information-sharing. 

  11. EURORDIS’ experience 12 • 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.

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