#ChronicLife - redefining patient participation in social media

Britt Johnson hurtblogger@gmail.com

Abstract

For 48 hours, I live-tweeted the reality of my chronic disease, creating an unfiltered insight into living life as a chronic patient. Using the hashtag #ChronicLife, and registering it through Symplur, I utilized their tools to bring quantifiable meaning to the narrative.  What began as an experiment by one patient, turned into a movement of honesty, communication, and education  - and is still ongoing. While much of the conversation initially appeared status quo to the patients, other stakeholders that viewed the tweets all unanimously said they were profoundly changed from the experiment. By the end of the 48 hr period, even the patients were changed (for the better) as unforeseen insight was gained that will affect all research in healthcare social media. 

From this talk, attendees will learn how real-time honest patient narrative created permission for other patients to improve communication in all aspects of their lives, and permission for other stakeholders to participate in healthcare social media on a new level.  This talk will look at why the narrative was greatly altered amongst a large number of patients within a 48 hour period, and how our current research into social media might be failing to grasp an accurate view of patients.  Then we’ll look at lessons learned and how we might apply them to improving the landscape of healthcare.

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