The document describes how Katherine Leon, suffering from spontaneous coronary artery dissection (SCAD), took to online forums and social media to connect with others experiencing SCAD and learn more about the condition. Through these online connections, Dr. Sharonne Hayes was able to launch a pilot research study on SCAD and recruit participants. The study demonstrated that patient-initiated online networks can effectively engage patients and recruit for research studies about rare conditions. Initial findings from the study were published in Mayo Clinic Proceedings in 2011. The future of research includes more active participation by patients in helping to advance understanding of their conditions.

1. The promise of
patient-initiated
research
Brian Loew
@brianloew
brian@inspire.com
#140YOU
June 2013
Katherine Leon @katherinekleon
katherine@scadresearch.org

2. A story about...
2
Search
Discovery
Self-organization
Empowerment
• Chutzpah
• Enlightenment
n Loew
ianloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

3. What is Spontaneous Coronary Artery Dissection?
3
Source: Mayo Clinic
n Loew
ianloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

4. 4
Search
n Loew
ianloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

5. 5
Discovery
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

6. 6
Discovery
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

7. 7
Discovery
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

8. Searching online for answers
From: <name>@aol.com [mailto:<name>@aol.com]
Sent: Wednesday, May 19, 2004 10:01 PM
To: KAKLeon@verizon.net
Subject: Re: postpartum dissection
Katherine,
I am glad to hear that your test results were good. Melissa has
talked to several women that have had this same problem. I have
the e-mail address of a few of them. I will give your name and e-
mail address to them so that you all can talk. I don't think you
will mind will you? I will also send you the e-mail addresses I
have. I know how important it is to be able to talk to each
other. Maybe Melissa will have her computer up and working in a
week or two.
Good Luck,
<name>
Lubbock, TX
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

9. And still searching
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

10. 10
Making connections
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

11. Growth of SCAD members
11
Katherine Leon makes
concrete connections
with others with SCAD
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

12. Growth of SCAD members
12
Laura Haywood-Cory posts
“All the SCAD Ladies”
Katherine Leon makes
concrete connections
with others with SCAD
WomenHeart partners
with Inspire
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

13. A researcher heeds the call
13
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

14. Growth of SCAD members
14
Laura Haywood-Cory posts
“All the SCAD Ladies”
Katherine Leon makes
concrete connections
with others with SCAD
Dr. Sharonne Hayes
launches pilot research
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

15. 15
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

16. 16
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.
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

17. Growth of SCAD members
17
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
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

18. 18
The future
Sharonne Hayes, MD, Mayo Clinic
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org

19. In conclusion
19
Value is created by patients like Katherine -- not (only)
through ‘traditional’ channels.
Many patients want to contribute to research, but
patients need better pathways to access researchers.
Technology matters a great deal.
Technology doesn’t matter at all.
n Loew
anloew
n@inspire.com
Katherine Leon @katherinekleon
katherine@scadresearch.org