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Leveraging the Latest Social Tools and Networks to Enhance Clinical Trial Recruitment


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Slides from my joint presentation with Julia Thebiay on July 21, 2016 in Denver at the Society for Clinical Research Associates conference on social media.

Published in: Science
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Leveraging the Latest Social Tools and Networks to Enhance Clinical Trial Recruitment

  1. 1. Leveraging the Latest Social Tools and Networks to Enhance Clinical Trial Recruitment Lee Aase (@LeeAase) & Julia Thebiay (@jthebiay) July 21, 2016
  2. 2. Agenda • The role of social networking in Mayo Clinic’s development • The evolution of media in the last 60 years • Perceived barriers to use of social media in clinical trials • Bringing social networking and media together • Research Applications: HLHS and SCAD • Developing your strategic social media plan - platforms and best practices
  3. 3. U.S. News Best Hospitals Metro Populations
  4. 4. 6 ▪ Every U.S. state ▪ More than 140 countries ▪ One in Five travels more than 500 miles for care Each year Mayo Clinic patients come from Why is this the case?
  5. 5. Social Networking in the Origins and Development of Mayo Clinic
  6. 6. Mayo Clinic’s First Social Networkers
  7. 7. Countries Dr. William Mayo Visited
  8. 8. Austria Denmark Ireland Scotland Australia England Italy Sweden Argentina Fiji Mexico Switzerland Belgium Finland New Zealand Uruguay Canada France Norway Chile Germany Peru Cuba Holland Russia Countries Dr. Will Mayo Visited
  9. 9. Visiting Dr. Hugh Devine’s OR in Melbourne
  10. 10. How Mayo Clinic got its Name…
  11. 11. Social Networking is part of Mayo Clinic’s DNA
  12. 12. Once upon a time, three networks dominated the media landscape in the United States
  13. 13. Every day these guys would define the news...
  14. 14. ... while local affiliates and newspapers sold scarce audience access at monopoly prices
  15. 15. Then one day Ted Turner launched the cable TV revolution...
  16. 16. And one of these guys invented the Internet... • Picture of Al Gore • Netscape Browser
  17. 17. While the Big Three didn’t sense the magnitude of the coming change...
  18. 18. ...Mayo Clinic did, and was among the first medical centers on the Web
  19. 19. Twin revolutions fragmented audiences, causing major economic upheaval • Hundreds of cable channels, exponential growth in Web sites • Mass media came under economic pressure • Demise of the TV (News) Doctor • Media organizations began streaming... toward bankruptcy. See Paper Cuts • Seth Godin: “The problem with scarcity is that there just isn’t enough of it anymore.”
  20. 20. The means of news production and distribution were democratized...
  21. 21. Until finally, the Big 3 TV share of audience crashed... Big Three Others
  22. 22. Facebook went public at 20x WSJ value… WSJ (2007) ABC (1995) Facebook (2012)
  23. 23. …and has more than tripled since 2012 WSJ (2007) ABC (1995) Facebook (2012) Facebook (2016)
  24. 24. Moving Mayo Clinic from Social Networking to Social Media
  25. 25. From Syndicated Media…
  26. 26. … to “New” Media (Podcasting)
  27. 27. Involuntary MySpace “Representation”
  28. 28. Accelerated Adoption of Free Platforms and Low-Cost Tools • 2007 - Facebook • 2008 • YouTube • Flip Cameras • Twitter • Blogs
  29. 29. Information Sources Influencing Preference for Mayo Clinic (2014)
  30. 30. Amplifying Word of Mouth Marketing
  31. 31. Sharing In-Depth Knowledge and Showcasing Expertise, Empathy
  32. 32. Unique Myelofibrosis Cases MCF MCA
  33. 33. Perceived Barriers to use of Social Media in Research • Time- We are already INCREDIBLY busy…. • It’s difficult to measure a true ROI. Nobody directly pays you to ‘tweet’. • HIPAA, IRB and FDA. • Fear of bad comments. • Fear of the unknown.
  34. 34. Time • Social Media does take time. • Build a team approach. • Time now can save you time later.
  35. 35. HIPAA
 • Review and understand your company’s social media policy, before getting started. • Speak in general terms about diseases or conditions. • Do not discuss specific patient situations, even in general terms. • Don’t take on-line conversations off-line.
  36. 36. IRB/OHRP • Engage with your IRB BEFORE you begin to use social media platforms. • Study specific, direct advertising, should be reviewed by the IRB. • General Information doesn’t necessarily need to be reviewed.
  37. 37. • The FDA has issued DRAFT guidance for the use of social media. • guidancecomplianceregulatoryinformation/ guidances/ucm401087.pdf • ‘FDA approved’ is not acceptable for drugs used under an IND. • The FDA grants ‘permission to proceed’ with a trial, NOT an approval. FDA
  38. 38. Hypoplastic Left Heart Syndrome (HLHS) • HLHS is a rare and complex congenital heart defect in which the left side of the heart is severely underdeveloped. • HLHS affects approximately 1,000 infants born in the US each year. • Three-staged surgical palliation or heart transplant are the only options for these infants.
  39. 39. Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome • Integrated research program within Mayo Clinic focused on genetics, imaging and finding regenerative, cell-based therapies for those affected with HLHS.
  40. 40. Challenges in Building the HLHS Program
  41. 41. ]
  42. 42. Seizing Opportunities: The Octogenarian Idol Example • Embedded in Sharing Mayo Clinic, posted to Facebook, Tweeted on 4/7/09
  43. 43. The next day...
  44. 44. TotalViews
  45. 45. Six days later... TotalViews
  46. 46. TotalViews
  47. 47. TotalViews
  48. 48. TotalViews
  49. 49. TotalViews
  50. 50. TotalViews
  51. 51. TotalViews
  52. 52. TotalViews
  53. 53. Early Morning May 26, 2009
  54. 54. Live in Studio: Good Morning America
  55. 55. May’s Sad News:
  56. 56. In Memory of Marlow
  57. 57. Break
  58. 58. Mayo Clinic Social Media Network • The Mayo Clinic Social Media Network (#MCSMN) exists to improve health globally by accelerating effective application of social media tools throughout Mayo Clinic and spurring broader and deeper engagement in social media by hospitals, medical professionals and patients. • Our Mission: Lead the social media revolution in health care, contributing to health and well being for people everywhere. • Makes resources developed for Mayo Clinic staff available to peers, and generates revenue to support mission.
  59. 59. A Catalyst for Social Media
  60. 60. Social for Healthcare Certificate from Mayo Clinic and Hootsuite
  61. 61. Mayo Clinic Connect: A Community of Communities
  62. 62. Visit
  63. 63. Website Pros • Great for static content • Acts as ‘home base’ • Provides contact information • Provides a high-level understanding about the research • Not much to maintain after initial roll-out Cons • Not effective for time- sensitive communication • Photos can become ‘outdated’ • Does not generate ‘conversation’ • Not always sufficient for all audiences
  64. 64. Website
  65. 65. Blog Pros • Provides information and announcements in real-time • Edits/changes can be made quickly • Assigned roles- • Contributor, Author, Editor, Administrator Cons • CONTENT, CONTENT, CONTENT • Dedicated time • Dedicated personnel • Buy-in from the team can be difficult
  66. 66. Blog
  67. 67. Starting with the blog
  68. 68. Twitter Pros • Allows direct communication with your audience. • Allows you to address their comments or concerns. • “Tweets,” can be re-tweeted by your followers. • Keyword search Cons • Tweets can be lost in a user’s Twitter feed quickly • 140 character limit for a “tweet” • Smaller user base, but growing! • Hard to measure impact
  69. 69. Twitter
  70. 70. Twitter
  71. 71. Be patient…It takes time
  72. 72. YouTube Pros • FREE • High user base • High quality video with nothing more than a camera phone • Allows for easy distribution of videos Cons • Unwanted advertising • Limited ability to customize your video • Related videos are not always related…
  73. 73. YouTube
  74. 74. Facebook • Target posts by demographics and interests • Boosting helps you reach prospective subjects more cost-effectively than mass media • Live video is public, accountable enhancement to informed consent process
  75. 75. Facebook
  76. 76. Final Thoughts from Julia
  77. 77. THINK BIG, start small • People affected by rare diseases form strong online communities. • Never underestimate the power of social media to tap into these communities. • THINK BIG- have a clear vision of what you want to achieve and a solid plan to get there. • Start small- one good social media platform is better than multiple subpar platforms.
  78. 78. Social Media is about being ‘social’ • Let others tell your story for you by: • Creating meaningful content for your target audience • Forming timely responses to comments and questions. It’s what makes social media, ‘social’ • Connecting with advocacy and support groups
  79. 79. Final Thoughts from Lee
  80. 80. Tweetable Truths • Objections to social media aren’t unique to clinical trials • Start with strategy and understand your audience before settling on particular tools • Failure to apply social media in your work may not be malpractice, but it’s mispractice
  81. 81. Social Media Residency ▪ One-day advanced course ▪ Prerequisite: Social for Healthcare Certificate ▪ Four remaining opportunities in 2016 ▪ Sept. 29 in Jacksonville ▪ Oct. 17 in Rochester ▪ Dec. 8 in Scottsdale ▪ Or in conjunction with…
  82. 82. Helpful Links • Join the Mayo Clinic Social Media Network • Take Mayo Clinic-Hootsuite Social Media Basics for Healthcare online certification • Contact us by email: