Paris, June 5th – 6th 2014

June 5th - 6th 2014 Paris, France

Paris, June 5th – 6th 2014

CREATING AN ONLINE PATIENT COMMUNITY

FROM SCRATCH

Paris, June 5th – 6th 2014

CREATING A COMMUNITY

UNITE Know your community Create an authentic, tailor made

environment (geography, language, branding, theme, regular content…)

SHARE Exchange personal stories and

useful information encourage members to do the same

(≠ censorship)

ENLIGHTENEMPOWER Use that knowledge to be proactive Use your own experience, knowledge

and ressources to improve things

Apply that knowledge for the benefit of your own situation

Educate yourself and in turn share your insight with the community

Paris, June 5th – 6th 2014

Communauté cancer du sein / Syndrome d’Asperger en Suisse Romande

SEINPLEMENT ROMAND(E)S ASPIE ROMANDIE

Blog Group / page Facebook

Twitteraccount

Group: 102 members

Page: 109 likes

Group 190 members

107 Twitter followers

21 Twitter followers

Paris, June 5th – 6th 2014

Suisse Romande is the target audience

Facebook groups

Twitter accounts

Bringing people together who have a common experience, encouraging them to share it, learn from others and find understanding and support.

≠ SR has a fan page AR does not

≠ AR has a link button on the site of an official association, SR does not

≠ The FB group works really well for AR, many exchanges. Not for SR. Is breast cancer still too taboo?

SRAR

≠ The AR group has been around longer (2008) than SR (2012) who still needs to build its’ breast cancer community

Paris, June 5th – 6th 2014

LESSONS LEARNED Invest time / know the context / be patient.

Be authentic, share emotion, be honest.

Be welcoming and introduce new members to the group.

Quick profile check of the person requesting to join.

Paris, June 5th – 6th 2014

Be diplomatic, understanding and state that it’s ok to have differences of opinon.

You don’t post the same way to FB that you do on Twitter (≠ no linking of accounts!)

Be creative, ask questions, keep up to date with latest information, create conversations, show gratitude.

If possible, link with an official association-organisation-institution for more visibility.

LESSONS LEARNED

Paris, June 5th – 6th 2014