Presentation by Inspire CEO Brian Loew to Society of Clinical Research Associates (SoCRA), Harnessing Social Media to Advance Clinical Research conference, August 2, 2013

1. Beyond Privacy: Social
Media’s Ethical Responsibility
to the Clinical Trial Patient
SoCRA
August, 2013

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A story about...
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Search
Discovery
Self-organization
Empowerment Audacity
Enlightenment

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What is Spontaneous Coronary Artery Dissection?
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Source: Mayo Clinic

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Search

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Discovery

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Discovery

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Discovery

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A personal story

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...the search continues

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Growth of SCAD members
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Katherine Leon makes
concrete connections
with others with SCAD

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Growth of SCAD members
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Katherine Leon makes
concrete connections
with others with SCAD

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The call to action

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Growth of SCAD members
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Laura Haywood-Cory posts
“All the SCAD Ladies”
Katherine Leon makes
concrete connections
with others with SCAD

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A researcher heeds the call
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Growth of SCAD members
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Laura Haywood-Cory posts
“All the SCAD Ladies”
Katherine Leon makes
concrete connections
with others with SCAD
Dr. Sharonne Hayes
launches pilot research

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Initial findings
From Mayo Clinic Proceedings
September, 2011
CONCLUSION
Our pilot demonstrates successful social
networking-enabled research participant
engagement and recruitment among
members of an international disease-
specific online community and outlines a
novel methodology to obtain
retrospective and prospective data from
persons with uncommon, poorly
understood conditions. Our pilot serves
as a model as we develop a more
extensive, much-needed retrospective
and prospective study of SCAD. This
process of recruiting research trial
participants with self-identified conditions
from social networking Internet sites
represents a mechanism to develop a
novel “multicenter disease registry” that
could be replicated to study and propel
medical advances in other uncommon
conditions that may not otherwise be
subjects of active investigation.

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Growth of SCAD members
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Laura Haywood-Cory posts
“All the SCAD Ladies”
Katherine Leon makes
concrete connections
with others with SCAD
Dr. Sharonne Hayes
launches pilot research
Initial Mayo findings published

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The miracle of this community is how our numbers grow. Thanks
to Google, each newly diagnosed woman just types a few
keystrokes and she is viewing our conversations. That is just
amazing. And the closeness that we share is equally
astounding. I find myself talking about Laura, Sharon and so
many others—my new Kansas City friend, Miss Puerto Rico, and
Kathy with the yellow Lab—as if we’ve just sat around a pot of
coffee in my living room. And it isn’t a farce. I’ve found an
individual’s character can shine through brightly in text. Since we
are communicating about real concerns (i.e., issues relating to
health and the quality of our lives), the superficiality dissolves
immediately. I have noticed portion out your energy and
thoughts to those on your wavelength, whereas in day-to-day
life, we often keep up a façade.
-- A member in Lebanon, NJ

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The future

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In conclusion...
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Value is created by patients -- not (only) by us.
Many patients want to contribute to research.Patients
need better pathways to access researchers.
Technology matters a great deal.
Technology doesn’t matter at all.
Technology doesn’t matter at all.
A few things we’ve learned about patient-initiated research: