The promise of patient-initiated research

The promise ofpatient-initiated research

Brian Loew @brianloewbrian@inspire.com

#140YOU

June 2013

Katherine Leon @katherinekleonkatherine@scadresearch.org

A story about...

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Discovery

Self-organization

Empowerment

• Chutzpah

• Enlightenment

What is Spontaneous Coronary Artery Dissection?

Source: Mayo Clinic

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Discovery

Searching online for answers

From: <name>@aol.com [mailto:<name>@aol.com]Sent: Wednesday, May 19, 2004 10:01 PMTo: KAKLeon@verizon.netSubject: 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

And still searching

Making connections

Growth of SCAD members

Katherine Leon makes concrete connections with others with SCAD

Laura Haywood-Cory posts “All the SCAD Ladies”

WomenHeart partners with Inspire

A researcher heeds the call

13Brian Loew @brianloewbrian@inspire.com

Dr. Sharonne Hayes launches pilot research

15Brian Loew @brianloewbrian@inspire.com

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.

Dr. Sharonne Hayes launches pilot research

Initial Mayo findings published

The future

Sharonne Hayes, MD, Mayo Clinic

In conclusion

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.

The promise of patient-initiated research

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