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Session on social media and ethics in fundraising, presented with Dave Tinker at Association of Fundraising Professionals International Fundraising Conference in Baltimore March 2015.
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Brian Loew, CEO of Inspire, and patient advocate Katherine Leon presented at a June 2013 conference, #140YOU, on the topic of rare diseases and social networks. Katherine, internationally known for her "SCAD Ladies" advocacy, described how she and other women with a rare heart condition, spontaneous coronary artery dissection, self-organized on an Inspire online support community and fueled new research by the Mayo Clinic.
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Successfully Navigating the Parent Landmines in the NICU Inspire
Deb Discenza of PreemieWorld and the Inspire Preemie Support Community, presents at the 9th Council of International Neonatal Nurses Conference (COINN), in August 2016.
Support Without Borders: The Ovarian Cancer Online CommunityInspire
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Experts by Experience 2016: A compilation of patient storiesInspire
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The "Pulmonary Fibrosis Patient/Caregiver Experience Survey" explored the experiences of people affected by pulmonary fibrosis. Inspire conducted the survey in cooperation with its partner, the Pulmonary Fibrosis Foundation (PFF). Inspire CEO Brian Loew presented the findings during the PFF Summit in Nov. 2015 in Washington, DC.
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Presentation by Inspire Research Director Dave Taylor at Evidence for Value-Based Programs conference
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What Do Patients Really Want Out Of Adherence Technology?Inspire
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13. brian@inspire.com @brianloew
Growth of SCAD members
13
Laura Haywood-Cory posts
“All the SCAD Ladies”
Katherine Leon makes
concrete connections
with others with SCAD
15. brian@inspire.com @brianloew
Growth of SCAD members
15
Laura Haywood-Cory posts
“All the SCAD Ladies”
Katherine Leon makes
concrete connections
with others with SCAD
Dr. Sharonne Hayes
launches pilot research
17. brian@inspire.com @brianloew 17
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.
18. brian@inspire.com @brianloew
Growth of SCAD members
18
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
20. brian@inspire.com @brianloew 20
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
22. brian@inspire.com @brianloew
In conclusion...
22
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: