Liberate your data now!

How to use social media to activate a community around a rare disease



If you ever have the opportunity to hear Todd Park, Chief Technology Officer at the US 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.

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 healthcare: patients, professionals, payers, providers, drug manufacturers and government.

Park shared great information about how innovation around healthcare 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.

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.

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 logged 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.

Ciaran Bellwoar is with Siren Interactive.

For exclusive business insights, download eyeforpharma's Pharma Emerging Markets Report 2011-12and Pharma Key Account Management Report 2011-12.

For all the latest business analysis and insight for the pharma industry, sign up to eyeforpharma’s newslettersand follow us on Twitter.



Jan 1, 1970 - Jan 1, 1970,