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Optimising Social Media to Communicate a Patient Perspective

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Presentation to European Federation of Neurological Associations meeting Trinity College Dublin

Published in: Health & Medicine

Optimising Social Media to Communicate a Patient Perspective

  1. 1. Optimising Social Media to Communicate a Patient Perspective Marie Ennis-O’Connor @JBBC
  2. 2. 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
  3. 3. 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
  4. 4. 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
  5. 5. 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
  6. 6. Social Media Media Social
  7. 7. social media is not new
  8. 8. POST People Objective Strategy Technology
  9. 9. A map to guide you
  10. 10. 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?
  11. 11. It’s much easier to adapt or scale something that already works than to start completely from scratch seek out tried and tested solutions
  12. 12. objectives and goals
  13. 13. cr e a t e m e d i a l i st
  14. 14. 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
  15. 15. where to find your audience online
  16. 16. online influencers are message catalysts
  17. 17. tools to identify influencers
  18. 18. listen to learn
  19. 19. where can you find conversations?
  20. 20. Twitter
  21. 21. be human be personal be social
  22. 22. effective stories inspire people by creating human connection and emotional resonance
  23. 23. story makes us human
  24. 24. Good Stories move hearts and minds and inspire meaningful action
  25. 25. PNAS.org: Speaker–listener neural coupling underlies successful communication by Greg J. Stephens, Lauren J. Silbert and Uri Hasson
  26. 26. your brain on story
  27. 27. what makes a good story?
  28. 28. hero time suspense plot
  29. 29. throw in a plot twist
  30. 30. Good Stories create an experience that evokes an emotional response
  31. 31. action e-motion
  32. 32. tell stories that point a way forward
  33. 33. make it actionable
  34. 34. where do you get YOUR stories?
  35. 35. invite stories
  36. 36. how can we tell stories in a way that does not exploit but honours them?
  37. 37. • Who is telling the story? • Who controls the story? • How will the story be used? questions to consider
  38. 38. • 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.
  39. 39. a person’s story is a precious thing; take care of it… and them!
  40. 40. digital storytelling tools
  41. 41. blog
  42. 42. podcasts
  43. 43. social media
  44. 44. video
  45. 45. visual storytelling
  46. 46. key takeaways
  47. 47. • 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
  48. 48. now it’s YOUR Turn!

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