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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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The promise ofpatient-initiated research
Brian Loew @[email protected]
#140YOU
June 2013
Katherine Leon @[email protected]
A story about...
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Search
Discovery
Self-organization
Empowerment
• Chutzpah
• Enlightenment
Brian Loew @[email protected]
Katherine Leon @[email protected]
What is Spontaneous Coronary Artery Dissection?
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Source: Mayo Clinic
Brian Loew @[email protected]
Katherine Leon @[email protected]
Searching online for answers
From: <name>@aol.com [mailto:<name>@aol.com]Sent: Wednesday, May 19, 2004 10:01 PMTo: [email protected]: 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
Brian Loew @[email protected]
Katherine Leon @[email protected]
Growth of SCAD members
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Katherine Leon makes concrete connections with others with SCAD
Brian Loew @[email protected]
Katherine Leon @[email protected]
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
WomenHeart partners with Inspire
Brian Loew @[email protected]
Katherine Leon @[email protected]
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
Brian Loew @[email protected]
Katherine Leon @[email protected]
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Initial findingsFrom 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.
Brian Loew @[email protected]
Katherine Leon @[email protected]
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
Brian Loew @[email protected]
Katherine Leon @[email protected]
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The future
Sharonne Hayes, MD, Mayo Clinic
Brian Loew @[email protected]
Katherine Leon @[email protected]
In conclusion
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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.
Brian Loew @[email protected]
Katherine Leon @[email protected]
![Patient-initiated Online Support Groups: Motives for Initiation, Extent of Success and Success Factors [4 1530 Aud Van Uden Kraan]](https://img.pdfslide.net/doc/110x75/5576501ad8b42aaa548b47da/patient-initiated-online-support-groups-motives-for-initiation-extent-of-success-and-success-factors-4-1530-aud-van-uden-kraan.jpg)
