Leveraging the Latest Social Tools and Networks to Enhance Clinical Trial Recruitment
Leveraging the Latest Social Tools and
Networks to Enhance Clinical Trial
Lee Aase (@LeeAase) & Julia Thebiay (@jthebiay)
July 21, 2016
• The role of social networking in Mayo Clinic’s
• The evolution of media in the last 60 years
• Perceived barriers to use of social media in
• Bringing social networking and media together
• Research Applications: HLHS and SCAD
• Developing your strategic social media plan -
platforms and best practices
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
... while local affiliates and
newspapers sold scarce audience
access at monopoly prices
Then one day Ted Turner launched
the cable TV revolution...
And one of these guys
invented the Internet...
• Picture of Al Gore
• Netscape Browser
While the Big Three didn’t sense the
magnitude of the coming change...
...Mayo Clinic did, and was among
the first medical centers on the Web
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.”
The means of news production and
distribution were democratized...
Until finally, the Big 3 TV share
of audience crashed...
Big Three Others
Facebook went public at 20x WSJ value…
WSJ (2007) ABC (1995) Facebook (2012)
…and has more than tripled since 2012
WSJ (2007) ABC (1995) Facebook (2012) Facebook (2016)
Moving Mayo Clinic from
Social Networking to
Perceived Barriers to use of
Social Media in Research
• Time- We are already INCREDIBLY
• 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.
• Social Media does take time.
• Build a team approach.
• Time now can save you time later.
• Review and understand your company’s social
media policy, before getting started.
• Speak in general terms about diseases or
• Do not discuss specific patient situations, even in
• Don’t take on-line conversations off-line.
• 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.
• The FDA has issued DRAFT guidance for the use
of social media.
• ‘FDA approved’ is not acceptable for drugs used
under an IND.
• The FDA grants ‘permission to proceed’ with a
trial, NOT an approval.
Hypoplastic Left Heart
• HLHS is a rare and complex congenital heart defect
in which the left side of the heart is severely
• 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.
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
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
• Makes resources developed for Mayo Clinic staff available
to peers, and generates revenue to support mission.
• 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
• Not effective for time-
• Photos can become
• Does not generate
• Not always sufficient for all
• Provides information and
announcements in real-time
• Edits/changes can be made
• Assigned roles-
• Contributor, Author, Editor,
• CONTENT, CONTENT,
• Dedicated time
• Dedicated personnel
• Buy-in from the team can be
• Allows direct communication
with your audience.
• Allows you to address their
comments or concerns.
• “Tweets,” can be re-tweeted by
• Keyword search
• Tweets can be lost in a
user’s Twitter feed quickly
• 140 character limit for a
• Smaller user base, but
• Hard to measure impact
• High user base
• High quality video with
nothing more than a camera
• Allows for easy distribution of
• Unwanted advertising
• Limited ability to customize
• Related videos are not
• 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
THINK BIG, start small
• People affected by rare diseases form strong online communities.
• Never underestimate the power of social media to tap into these
• 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
Social Media is about being
• 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
• Objections to social media aren’t unique to
• 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
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…
• Join the Mayo Clinic Social Media
• Take Mayo Clinic-Hootsuite Social Media
Basics for Healthcare online certification
• Contact us by email: