The promise of patient-initiated research
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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.
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The promise of patient-initiated research
- 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