Reading & Reacting: The Wisdom of Patients (CHCF Report)


“Social media on the Internet are empowering, engaging, and educating health care consumers and providers. While consumers use social media — including social networks, personal blogging, wikis, video-sharing, and other formats — for emotional support, they also heavily rely on them to manage health conditions.”
The Wisdom of Patients: Health Care Meets Online Social Media
Jane Sarasohn-Kahn, THINK-Health
April 2008
http://www.chcf.org/topics/chronicdisease/index.cfm?itemID=133631
Thursday, after the a2b3 meeting, several of us were discussing this very concept. Many folk are worried about the privacy issues of social media for support communities as well as for personal health records and tracking. Despite this, there seems to be an overwhelming drive to make personal use of the empowerment and flexibility offered by social media.
More and more, I find examples of social tools designed specifically for the use of health care consumers and professionals, but mostly for consumers.
DailyStrength: http://dailystrength.com/
ICYou: http://icyou.com/
ReliefInSite: http://www.reliefinsite.com
More and more, I find articles and examples of how more general social media tools and resources are being used for personal health management or interventions.
SugarStats & Twitter Help You Keep Track of Your Diabetes: http://linuxchic.net/internet/sugarstats-and-twitter-help-you-keep-track-of-your-diabetes/
Tweet What You Eat: http://tweetwhatyoueat.com/
Twitter for Health: http://www.social-marketing.com/blog/2008/02/twitter-for-health.html
In my slideshow on e-health last summer I gave examples of patients building their own custom applications in general social media tools (such as Google Docs) as well as other examples of tools and applications.

This report provides an overview of the current state of social media in healthcare. At this moment, it seems to be more a direction for the future. Ten years ago the public had just really discovered the Web but only a percentage were making active use of it for health information. That percentage has grown to become a majority. Signs are pointing toward social media being the next evolutionary step toward the personally empowered patient who partners in their own clinical decisionmaking.
The Wisdom of Patients report also looks at trends and patterns for the future, and how the concepts of social and community are playing out in the online environment. Particularly interesting sections of the report are those that examine the concept of collaborative decisionmaking with healthcare professionals and consumers (“Platforms that Make Health Consumers and Clinicians Peers”), the dynamics of the social communities (“Knitting Communities Together” and “Disruptions Through Collaborations”), and the very significant “New Patient Opinion Leader”.
What I am observing is that, whether it is encouraged or not, the person with a need and accessible tools is likely to find creative solutions for their needs. Healthcare consumers are now using, and will continue to use, a variety of online tools and resources to seek information, to seek support, to manage and share their personal health information, and much more. I hope that both the healthcare and information professions will anticipate these directions, and plan to meet the healthcare consumer at their virtual home, wherever that might be.

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