Beyond Privacy: Social Media’s Ethical Responsibility to the Clinical Trial Patient

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Presentation by Inspire CEO Brian Loew to Society of Clinical Research Associates (SoCRA), Harnessing Social Media to Advance Clinical Research conference, August 2, 2013

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Beyond Privacy: Social Media’s Ethical Responsibility to the Clinical Trial Patient

  1. 1. Beyond Privacy: Social Media’s Ethical Responsibility to the Clinical Trial Patient SoCRA August, 2013
  2. 2. brian@inspire.com @brianloew A story about... 2 Search Discovery Self-organization Empowerment Audacity Enlightenment
  3. 3. brian@inspire.com @brianloew What is Spontaneous Coronary Artery Dissection? 3 Source: Mayo Clinic
  4. 4. brian@inspire.com @brianloew 4 Search
  5. 5. brian@inspire.com @brianloew 5 Discovery
  6. 6. brian@inspire.com @brianloew 6 Discovery
  7. 7. brian@inspire.com @brianloew 7 Discovery
  8. 8. brian@inspire.com @brianloew 8 A personal story
  9. 9. brian@inspire.com @brianloew 9 ...the search continues
  10. 10. brian@inspire.com @brianloew Growth of SCAD members 10 Katherine Leon makes concrete connections with others with SCAD
  11. 11. brian@inspire.com @brianloew Growth of SCAD members 11 Katherine Leon makes concrete connections with others with SCAD
  12. 12. brian@inspire.com @brianloew 12 The call to action
  13. 13. brian@inspire.com @brianloew Growth of SCAD members 13 Laura Haywood-Cory posts “All the SCAD Ladies” Katherine Leon makes concrete connections with others with SCAD
  14. 14. brian@inspire.com @brianloew A researcher heeds the call 14
  15. 15. brian@inspire.com @brianloew Growth of SCAD members 15 Laura Haywood-Cory posts “All the SCAD Ladies” Katherine Leon makes concrete connections with others with SCAD Dr. Sharonne Hayes launches pilot research
  16. 16. brian@inspire.com @brianloew 16
  17. 17. brian@inspire.com @brianloew 17 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.
  18. 18. brian@inspire.com @brianloew Growth of SCAD members 18 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
  19. 19. brian@inspire.com @brianloew 19
  20. 20. brian@inspire.com @brianloew 20 The miracle of this community is how our numbers grow. Thanks to Google, each newly diagnosed woman just types a few keystrokes and she is viewing our conversations. That is just amazing. And the closeness that we share is equally astounding. I find myself talking about Laura, Sharon and so many others—my new Kansas City friend, Miss Puerto Rico, and Kathy with the yellow Lab—as if we’ve just sat around a pot of coffee in my living room. And it isn’t a farce. I’ve found an individual’s character can shine through brightly in text. Since we are communicating about real concerns (i.e., issues relating to health and the quality of our lives), the superficiality dissolves immediately. I have noticed portion out your energy and thoughts to those on your wavelength, whereas in day-to-day life, we often keep up a façade. -- A member in Lebanon, NJ
  21. 21. brian@inspire.com @brianloew 21 The future
  22. 22. brian@inspire.com @brianloew In conclusion... 22 Value is created by patients -- not (only) by us. Many patients want to contribute to research.Patients need better pathways to access researchers. Technology matters a great deal. Technology doesn’t matter at all. Technology doesn’t matter at all. A few things we’ve learned about patient-initiated research:

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