The promise of patient-initiated research

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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 of patient-initiated research

  1. 1. The promise ofpatient-initiatedresearchBrian Loew@brianloewbrian@inspire.com#140YOUJune 2013Katherine Leon @katherinekleonkatherine@scadresearch.org
  2. 2. A story about...2SearchDiscoverySelf-organizationEmpowerment• Chutzpah• Enlightenmentn Loewianloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  3. 3. What is Spontaneous Coronary Artery Dissection?3Source: Mayo Clinicn Loewianloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  4. 4. 4Searchn Loewianloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  5. 5. 5Discoveryn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  6. 6. 6Discoveryn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  7. 7. 7Discoveryn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  8. 8. Searching online for answersFrom: <name>@aol.com [mailto:<name>@aol.com]Sent: Wednesday, May 19, 2004 10:01 PMTo: KAKLeon@verizon.netSubject: Re: postpartum dissectionKatherine,I am glad to hear that your test results were good. Melissa hastalked to several women that have had this same problem. I havethe 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 dont think youwill mind will you? I will also send you the e-mail addresses Ihave. I know how important it is to be able to talk to eachother. Maybe Melissa will have her computer up and working in aweek or two.Good Luck,<name>Lubbock, TXn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  9. 9. And still searchingn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  10. 10. 10Making connectionsn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  11. 11. Growth of SCAD members11Katherine Leon makesconcrete connectionswith others with SCADn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  12. 12. Growth of SCAD members12Laura Haywood-Cory posts“All the SCAD Ladies”Katherine Leon makesconcrete connectionswith others with SCADWomenHeart partnerswith Inspiren Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  13. 13. A researcher heeds the call13n Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  14. 14. Growth of SCAD members14Laura Haywood-Cory posts“All the SCAD Ladies”Katherine Leon makesconcrete connectionswith others with SCADDr. Sharonne Hayeslaunches pilot researchn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  15. 15. 15n Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  16. 16. 16Initial findingsFrom Mayo Clinic ProceedingsSeptember, 2011CONCLUSIONOur pilot demonstrates successful socialnetworking-enabled research participantengagement and recruitment among membersof an international disease-specific onlinecommunity and outlines a novel methodologyto obtain retrospective and prospective datafrom persons with uncommon, poorlyunderstood conditions. Our pilot serves as amodel as we develop a more extensive,much-needed retrospective and prospectivestudy of SCAD. This process of recruitingresearch trial participants with self-identifiedconditions from social networking Internetsites represents a mechanism to develop anovel “multicenter disease registry” that couldbe replicated to study and propel medicaladvances in other uncommon conditions thatmay not otherwise be subjects of activeinvestigation.n Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  17. 17. Growth of SCAD members17Laura Haywood-Cory posts“All the SCAD Ladies”Katherine Leon makesconcrete connectionswith others with SCADDr. Sharonne Hayeslaunches pilot researchInitial Mayo findings publishedn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  18. 18. 18The futureSharonne Hayes, MD, Mayo Clinicn Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org
  19. 19. In conclusion19Value is created by patients like Katherine -- not (only)through ‘traditional’ channels.Many patients want to contribute to research, butpatients need better pathways to access researchers.Technology matters a great deal.Technology doesn’t matter at all.n Loewanloewn@inspire.comKatherine Leon @katherinekleonkatherine@scadresearch.org

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