Optimising Social Media to Communicate a Patient Perspective
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Presentation to European Federation of Neurological Associations meeting Trinity College Dublin
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Optimising Social Media to Communicate a Patient Perspective
- 1. Optimising Social Media to Communicate a Patient Perspective Marie Ennis-O’Connor @JBBC
- 4. From a technical point of view Social Media is an evolution of existing web technologies From a socio-political viewpoint Social Media is a fundamental shift in the way we can: • mobilise communities around an issue • extend our message reach • influence the decision making process
- 7. obama campaign • Rallied 5 million active supporters across 15 social networks • 3 million online donors contributed $6.5 million to Obama campaign • 1,800 clips of film generating over a billion minutes of viewership
- 8. low (or no) costs for set-up potentially wide reach quick/instantaneous sharing of messages opportunities for multiple exposures to our messages new opportunities to listen, engage, and monitor your progress
- 9. digital activism Reach Out •Reach patients, policymakers and media •Shape public debate •Mobilise online support Support •Raise awareness •Provide information and support •Connect advocates Collaborate •Link up with experts globally •Gather feedback •Collect evidence
- 11. social media is not new
- 16. A map to guide you
- 19. Out There • What’s already going on? • Who are your competitors, or potential collaborators? • What’s being said about the issue? • What has succeeded and failed before – and why? • Where is your audience online and offline? • How do they currently interact with each other? In Here • What stage are you at in terms of social media activities? • Who will be responsible for implementing social media? • How much time can you devote to it? • Do you need to hire in outside expertise?
- 20. It’s much easier to adapt or scale something that already works than to start completely from scratch seek out tried and tested solutions
- 27. cr e a t e m e d i a l i st
- 29. questions to guide you What do they know or believe about your organisation or issue? Perception What social media channels are they currently using? What times are they online? Channels Who influences them? Influence
- 30. where to find your audience online
- 33. online influencers are message catalysts
- 34. tools to identify influencers
- 35. listen to learn
- 36. where can you find conversations?
- 37. Twitter
- 41. be human be personal be social
- 49. effective stories inspire people by creating human connection and emotional resonance
- 51. Good Stories move hearts and minds and inspire meaningful action
- 52. PNAS.org: Speaker–listener neural coupling underlies successful communication by Greg J. Stephens, Lauren J. Silbert and Uri Hasson
- 53. your brain on story
- 58. what makes a good story?
- 61. throw in a plot twist
- 63. Good Stories create an experience that evokes an emotional response
- 66. action e-motion
- 68. tell stories that point a way forward
- 70. where do you get YOUR stories?
- 71. invite stories
- 72. how can we tell stories in a way that does not exploit but honours them?
- 73. • Who is telling the story? • Who controls the story? • How will the story be used? questions to consider
- 74. • Not just about protecting privacy • Never assume someone wants/doesn’t want to share their story – Ask! • Be upfront about how the story will be used • Allow people to tell their story in their own voice • Avoid stereotyping and victimising • Share parts of a person’s story that lets us see the person is more than their illness.
- 76. a person’s story is a precious thing; take care of it… and them!
- 78. blog
- 80. podcasts
- 81. social media
- 82. video
- 86. key takeaways
- 87. • People make technology matter • Go where people already are • Learn to listen before you start talking • Grow your connections online • Nurture your relationships • Mind your stories • Keep trying new things • Make it sustainable over long term
- 88. now it’s YOUR Turn!