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

SoCRAAugust, 2013

brian@inspire.com @brianloew

A story about...

Search

Discovery

Self-organization

Empowerment Audacity

Enlightenment

What is Spontaneous Coronary Artery Dissection?

Source: Mayo Clinic

brian@inspire.com @brianloew 4

Search

Discovery

A personal story

...the search continues

Growth of SCAD members

Katherine Leon makes concrete connections with others with SCAD

The call to action

Laura Haywood-Cory posts “All the SCAD Ladies”

A researcher heeds the call

Dr. Sharonne Hayes launches pilot research

Initial findingsFrom Mayo Clinic ProceedingsSeptember, 2011CONCLUSION

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 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

The future

In conclusion...

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.

A few things we’ve learned about patient-initiated research:

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

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