OPTIMIZING EFFECTIVENESS OF PATIENT ORGANIZATIONS ARE FAVOURITES AND LIKES ENOUGH? UNLOCKING THE POTENTIAL OF DIGITAL ADVOCACY
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Rare Disease Day 2015 Conference Day 3: Joanne Koskie
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OPTIMIZING EFFECTIVENESS OF PATIENT ORGANIZATIONS ARE FAVOURITES AND LIKES ENOUGH? UNLOCKING THE POTENTIAL OF DIGITAL ADVOCACY
- 1. OPTIMIZING EFFECTIVENESS OF PATIENT ORGANIZATIONS ARE FAVOURITES AND LIKES ENOUGH? UNLOCKING THE POTENTIAL OF DIGITAL ADVOCACY March 7, 2015
- 2. CAN RARE ROAR? 2 • Inherent challenges of rare disease groups impact ability to advocate effectively: −small membership base, volunteer-driven −broader disease community is also small, not connected −those touched by rare disease have little extra time or energy −often a number of unmet needs to address – where to start? How can a rare disease group amplify their voice, increase awareness, and most importantly, generate action?
- 3. ARE LIKES AND FAVOURITES ENOUGH? 3 • The Internet can be an effective medium to allow patient groups to amplify their voice and grow an effective advocacy base • Engaging people not connected with a rare disease is hard • Getting them to do something in the real world – even harder! • Capture and cultivate supporters online through content and tools that make it easy for people to get more involved • The key to effective digital advocacy is moving a community from PASSIVE to ACTIVE support
- 4. ALL DIGITAL ACTIVITIES REQUIRE REAL-WORLD CONSEQUENCES
- 6. APPLAUSE/SHARE • Likes and favourites from your friends/followers • Retweets from anyone – media, politicians • Shares on Facebook • Sharing YouTube links • All drives back to an owned channel, such as a website CO-PRODUCE • Retweeting with comment • Commenting on your content • Sharing content/article with added call-to-action • E-advocacy – i.e. letters, tweets, posts, petitions • Tagging people in their network ACTION • Attending or organizing gatherings, meet-ups, etc. • Submitting petitions to elected officials • Meetings with government officials • Spokesperson for media interviews • Attending or organizing lobby/action days ACTION GENERATION! PRODUCE • Creating own content – song, video, blog post • Collecting signatures on your group’s petition • Starting a supportive Facebook group • Letters to government officials, decision-makers
- 7. DEVELOPING KEY MESSAGES FOR EFFECTIVE ADVOCACY • Key messages serve as the foundation for all effective advocacy efforts • The process of developing key messages help to distill your topic to the words that will advance your issue with government • Your messages will help you to communicate with decision-makers, through traditional, digital, and social media • A free guide called “Developing Key Messages for Effective Healthcare Advocacy” is available here (or copy this link into your browser: www.cohnwolfe.ca/keymessages)
- 8. THANK YOU! Joanne Koskie Paul Lawton joanne.koskie@cohnwolfe.ca paul.lawton@cohnwolfe.ca @jekoskie @pklawton