"Designing for search and discovery is crucial: an example from rare disease," a presentation by Inspire CEO Brian Loew on March 25, 2013, at the Healthcare Experience Design Conference.

1. Designing for search and
discovery is crucial:
an example from rare disease

2. “This exchange of information with mostly strangers (at first) can take some
pressure off the ones we love. They do care about us, but often will simply not
understand and at times things are better shared will relative strangers.”
Male with Ehlers-Danlos Syndrome, 33,
“In these online communities I get REAL information from those who are living
with this disease. Where we live there are no specialists for NF 1 and very few
doctors who have ever seen it. In these communities online I can find names of
doctors and treatments.”
Woman, 35, caregiver of son with neurofibromatosis type 1
“Being in the sarcoidosis group allowed me to meet friends, learn about my
sarcoidosis disease and ultimately find a doctor who has prescribed a
treatment that is clearing up the symptoms. Some symptoms I didn't even
realize I had, or that they were connected with the disease of sarcoidosis.”
Woman with sarcoidosis, 70, from California
@brianloew / brian@inspire.com HxD 2013 2

3. “Online communities show me what others are going through, they help keep
me updated on current NF1 topics, and also provide a place for me to release
my feelings with like-minded people.”
Man with neurofibromatosis type 1, 28
“I've only been diagnosed for four years, but I've learned more about what
makes me the way I am in the six months or so that I've been here than in all
the doctors' appointments over the years.”
Woman with Ehlers-Danlos Syndrome, 54, Virginia
“The knowledge and support I have gained here have helped me make wiser
treatment choices. The sarcoidosis group is truly a family.”
Woman with sarcoidosis, 60, from Pennsylvania
“I very recently found this site and already it has given me a wealth of
knowledge that I am sure will aid my recovery. My knowledge of my condition
has at least tripled in 24 hours!”
Woman with Nephrotic Syndrome, from the UK
@brianloew / brian@inspire.com HxD 2013 3

4. A story about...
Search
Discovery
Self-organization
Empowerment
Chutzpah
Enlightenment
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5. What is Spontaneous Coronary Artery Dissection?
Source: Mayo Clinic
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6. Search
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7. Discovery
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8. Discovery
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9. Discovery
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10. A personal story
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11. ...the search continues
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14. The call to action
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15. Growth of SCAD members
250"
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Laura Haywood-Cory posts
“All the SCAD Ladies”
150"
Katherine Leon makes
concrete connections
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16. A researcher heeds the call
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17. Growth of SCAD members
250"
Dr. Sharonne Hayes
launches pilot research
200"
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“All the SCAD Ladies”
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19. Initial findings
From Mayo Clinic Proceedings Sep, 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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20. Growth of SCAD members
250"
Initial Mayo findings published
Dr. Sharonne Hayes
launches pilot research
200"
Laura Haywood-Cory posts
“All the SCAD Ladies”
150"
Katherine Leon makes
concrete connections
with others with SCAD
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22. The future
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