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Liberate the Data: Social Health Summit Recap

Posted by | 6:33pm on Wednesday, October 5, 2011

Most of the bright people don't work for you -- no matter who you are. You need a strategy that allows for innovation occurring elsewhere 

If you ever have the opportunity to hear Todd Park, Chief Technology Officer at the U.S. Department of Health and Human Services, speak, make sure you do. He talks about data capture and IT systems with such enthusiasm you think you’re at a college pep rally. “Liberate the Data” is one of his mantras.

Viva la Data
Park was in perfect form at this year’s Social Health Summit (#SXSH) held in September. The annual “un-conference” focuses on all aspects of health care: patients, professionals, payers, providers, drug manufacturers and government.

Park shared great information about how innovation around health care is being fueled by the increasing availability of free data. Great applications are being developed and smart people are collaborating to solve some really tough issues. Check out Health.Data.Gov.

My biggest takeaway was when Park referred to Joy’s Law, a concept coined by Bill Joy, co-founder and former chief scientist at Sun Microsystems. There are a few versions floating around, but the gist is this: Most of the bright people don’t work for you — no matter who you are. You need a strategy that allows for innovation occurring elsewhere. Park explained that if you get the smart people excited about your idea they will find a way to make it happen.

The Joy of Social Media
I think Joy’s Law is really relevant to social media and activating a community around a rare disease. No matter what the disease, the most influential voices tweet or blog for somebody else. If you can get the advocates excited about your cause, they’ll get the word out to the community.

One recent example of this involves clinical trial recruitment for spontaneous coronary artery dissection (SCAD). A single epatient asked to be involved in the research and was tasked with finding study participants through an online support community on the website for WomenHeart: The National Coalition for Women with Heart Disease.  In less than a week, 18 people had requested information and enrollment documents – 6 more than the 12 needed for the pilot study. Read the full story.

FB+Children+Nurses=Staying Motivated
One nugget I have to share because it’s heartwarming. It came from Ed Bennett, Director, Web and Communications Technologies at the University of Maryland Medical Center. After a tough day, some nurses at the Children’s Hospital Boston log on to the hospital’s Facebook page to read the notes of gratitude from patients and families to boost their morale.

Ed’s presentation is worth viewing just for the couple of slides he uses to explain social media to his hospital colleagues. It gives those of us who have been immersed in social media for years a reality check of how it is still perceived by those only stepping up to the fence – not quite on it.

About Ciaran Bellwoar

Ciaran brings more than 10 years of interactive experience to her role as Director of Business Development. Before Siren, Ciaran was the Director of Client Relations at I-SITE, a web design and eMarketing firm where she created long-term relationships with mid-sized pharmaceutical companies such as Noven Pharmaceuticals and Purdue Pharma.

View other posts from Ciaran

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    05 October 2011 at 11:10pm
    Social Health Summit #SXSH Recap ...
  • Eileen O'Brien
  • 06 October 2011 at 12:10am
    Check out http://t.co/ZCXBQEwU for ...
  • Eileen O'Brien
  • 06 October 2011 at 12:10am
    Can't wait for next #SXSH! RT ...
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  • 06 October 2011 at 12:10am
    Good sum! RT @EileenOBrien: Check ...
  • Ellen Hoenig Carlson
  • 06 October 2011 at 1:10pm
    Liberate the Data: Social Health ...
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