1. Leveraging the Latest Social Tools and
Networks to Enhance Clinical Trial
Recruitment
Lee Aase (@LeeAase) & Julia Thebiay (@jthebiay)
July 21, 2016

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

5. U.S. News Best Hospitals Metro Populations

6. 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?

7. Social Networking in the Origins
and Development of Mayo Clinic

11. Mayo Clinic’s First Social Networkers

12. Countries Dr. William Mayo Visited

13. 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

16. Visiting Dr. Hugh Devine’s OR in Melbourne

17. How Mayo Clinic got its Name…

18. Social
Networking
is part of
Mayo
Clinic’s
DNA

19. Once upon a time, three networks dominated
the media landscape in the United States

20. Every day these guys would
define the news...

21. ... while local affiliates and
newspapers sold scarce audience
access at monopoly prices

22. Then one day Ted Turner launched
the cable TV revolution...

23. And one of these guys
invented the Internet...
• Picture of Al Gore
• Netscape Browser

24. While the Big Three didn’t sense the
magnitude of the coming change...

25. ...Mayo Clinic did, and was among
the first medical centers on the Web

26. 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.”

27. The means of news production and
distribution were democratized...

28. Until finally, the Big 3 TV share
of audience crashed...
Big Three Others

30. Facebook went public at 20x WSJ value…
WSJ (2007) ABC (1995) Facebook (2012)

31. …and has more than tripled since 2012
WSJ (2007) ABC (1995) Facebook (2012) Facebook (2016)

32. Moving Mayo Clinic from
Social Networking to
Social Media

33. From Syndicated Media…

34. … to “New” Media (Podcasting)

35. Involuntary MySpace “Representation”

38. Accelerated Adoption of Free
Platforms and Low-Cost Tools
• 2007 - Facebook
• 2008
• YouTube
• Flip Cameras
• Twitter
• Blogs

39. Information Sources Influencing
Preference for Mayo Clinic (2014)

40. Amplifying Word of Mouth Marketing

42. Sharing In-Depth Knowledge and
Showcasing Expertise, Empathy

44. Unique Myelofibrosis Cases
MCF MCA

47. 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.

48. Time
• Social Media does take time.
• Build a team approach.
• Time now can save you time later.

49. 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.

50. 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.

51. • The FDA has issued DRAFT guidance for the use
of social media.
• http://www.fda.gov/downloads/drugs/
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

52. 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.

53. 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.

54. Challenges in Building the HLHS Program

55. ]

80. Seizing Opportunities:
The Octogenarian Idol Example
• Embedded in Sharing Mayo Clinic, posted to
Facebook, Tweeted on 4/7/09

81. The next day...

82. TotalViews

83. Six days later...
TotalViews

84. TotalViews

85. TotalViews

88. TotalViews

89. TotalViews

90. TotalViews

92. TotalViews

93. TotalViews

94. Early Morning May 26, 2009

95. Live in Studio:
Good Morning America

97. May’s Sad News:

98. In Memory of Marlow

100. Break

102. 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.

103. A Catalyst for Social Media

106. Social for Healthcare Certificate
from Mayo Clinic and Hootsuite

112. Mayo Clinic Connect: A
Community of Communities

113. Visit Connect.MayoClinic.org

114. 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

115. Website

116. 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

117. Blog

118. Starting with the blog

120. 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

121. Twitter

122. Twitter

127. Be patient…It takes time

128. 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…

129. YouTube

132. 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

133. Facebook

140. Final Thoughts from Julia

141. 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.

142. 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

143. Final Thoughts from Lee

144. 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

146. 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…

148. Helpful Links
• Join the Mayo Clinic Social Media
Network
• Take Mayo Clinic-Hootsuite Social Media
Basics for Healthcare online certification
• Contact us by email:
socialmediacenter@mayo.edu