Social media: a catalyst for change (in afib patient associations)


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Keynote presentation given at a global summit of atrial fibrillation patient associations, Lisbon, March 19 - 20, 2013.

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Social media: a catalyst for change (in afib patient associations)

  1. 1. Social mediaA catalystfor change Advocacy in ActionLen Starnes Effecting ChangeDigital healthcare consultant Lisbon, 19 - 20 March 2013
  2. 2. Agenda 5 Framework 4 1 Stakeholders 101 2 3 Benefits Tools
  3. 3. So what are social media? Web-based tools which enable individuals and organizations to Create Co-create Share Exchange …information and ideas
  4. 4. What makes social media different? Reach Global Speed Rapid adoption Accessibility Available to all Usability Easy to use Recency Virtually instantaneousAdapted from
  5. 5. Scale & speed
  6. 6. 1/7of worldpopulationMind boggling
  7. 7. 8 giants across 6 continents
  8. 8. More is different, faster is different Philip W. AndersonPW Anderson, More is Different, Science, 4 August 1972
  9. 9. Different meansunpredictablechanges resultingfrom extraordinaryincreases in scaleAdapted from: PW Anderson, More is Different, Science, 4 August 1972
  10. 10. ‘We are livingin the middleof the largestincrease inexpressive capability in thehistory of the human race’Clay Shirkey, Here Comes Everybody, 2008
  11. 11. Politics Media &Travel entertainment Social media Effecting change everywhere CreativelyHealthcare destructing
  12. 12. ePatient Health 2.0movement Patients & patient associations Medicine 2.0Real-world data
  13. 13. Listen Comment Engage Share Benefits Benefits
  14. 14. Organizations andbusinesses in general Increase awareness of the organization Increase traffic to the organization’s website Increase favourable perceptions of the organization and its aimsAdapted from:
  15. 15. Patient associations Ability to monitor stakeholder and patient ‘conversations’ Increase quality and frequency of stakeholder interactions Initiate debate around your organization’s aims and those of the Patient Charter Provide authoritative compelling content on afib and stroke
  16. 16. Enablesyou to put ahuman faceto yourassociationEngendersempathy &authenticity
  17. 17. Tools
  18. 18. Twitter I’m riding my bike now Facebook I like bikes YouTube Watch me ride my bikePlatformsfor every Google+ My circle of biking friendsneed Linkedin My skills include riding a bike Instagram Here’s a photo of my bike Pinterest Here’s a photo of a cool bikeWith thanks toAndrew Spong
  19. 19. TwitterWhat’s happening now? Follow and join real-time conversations Tweets limited to 140 characters Over 500 million users 2013 Well established afib & stroke convos #afib #stroke hashtags enable convos to be easily found, followed and joined Excellent tracking and analysis tools
  20. 20. #Afib #stroke TweetDeck view
  21. 21. @stopafib 2nd most influential
  22. 22. Facebook World’s most popular network Create profiles, keep in touch with friends, family and colleagues, join common interest groups 1.2 billion users 2013 212 countries 2013 Large numbers of patient association presences Used by many afib
  23. 23. 380,000 Likes
  24. 24. YouTubeVideo sharing on steroids Upload, share, tag, like & comment 4 billion hours watched per month World’s 2nd largest search engine Exceptionally powerful content Literally demonstrate aims & expertise Significant viral potential SEO friendly – top spots in organic
  25. 25. Almost I million views
  26. 26. BlogsShared diaries Opinion, photos, videos, audio files Request comments & feedback, initiate conversations Excellent free platforms such as Tumblr, Blogger, WordPress Uses: latest Association news, afib/stroke resource centre, medical research updates, sharing personal stories, stakeholder news
  27. 27. Resident bloggers include Association VP, patients,Blog invites members doctors, medicalto share a story researchers, caregiversInsights posted fromrecent medical research
  28. 28. Stakeholders Benefits
  29. 29. Government/payers: UK‘The incentives…the abilityto enter into conversationswith different stakeholders…’ >11,000 followers March 2013
  30. 30. Payers: Germany PWC ‘Dramatic’ impact of SM on Krankenkassen- customer relationships SM ranking Techniker KK #1 14,599 FB Likes
  31. 31. Doctors: worldwide Membership Huge growth of of doctors’ doctors-only social networks social networks3m2m Today1m > 80 networks > 3 m members 2007 2008 2009 2010 2011 2012 2013
  32. 32. Initiate peer-to-peerconversations doc2doc (Global) Konsylium24 (PL) (UK,) Drportal (HU) Coliquio (D,CH,AT) iDoctus (ES) Esanum (D,AT,CH, Docactus (F) F,ES,IT) Egora (F) Hippokranet (D) Dottnet (I) DocCheckFaces (D) Doctor at Work (RU) MedUniverse (SE) iVrach (RU) Medcenter (ES,P) Doktorsitesi (TK)Engage where doctors go to engage
  33. 33. Medical schools:worldwide Medical schools are teaching students how to be better doctors by using SM Global SM course used by medical schools in Europe, USA and Asia Pacific region Dr Bertalan Mesko
  34. 34. Framework
  35. 35. Process challenges1.Stakeholders 2.Objectives Audit your Set SMART stakeholders’ objectives social presences 4.Technology 3.Strategy Decide which Plan how your social media relationship with platforms to use stakeholders will change
  36. 36. Integration challenges 5.Resources 6.PoliciesWho will manage Develop clearyour social media policies and presences? guidelines 7.Understand what ‘good’ looks like Set targets, track performance, optimize
  37. 37. Not embracingsocial media isnot an option
  38. 38. Len Starneslenstarnes@gmail.comT: + 49 30 781 5513M: + 49 172 1788253Skype: