Health 2.0

Sharing Data on Social Media


People use Facebook, Twitter, or other social media sites as channels for self-expression. But whether updating or uploading, people are telling their social stories with only two tools: text and images.

But what if social media wasn’t confined to words and pictures, but instead, allowed users to uploaded graphs or tables? In other words, could data, pure data, become a token in our social currency?

That’s the thought contributed during a panel session at the Health 2.0 Conference in San Francisco byGary Wolf, contributing editor at Wired, and an organizer of Quantified Self, a community whose users meticulously track certain aspects of their lives, some down to infinitesimal levels, such as how they spend every minute of the day (no joke).

Wolf’s comment followed a presentation by Stead Burwell, the CEO of Alliance Health Networks, who demoed Diabetic Connect an information and community site for patients battling diabetes. Alliance spent a great deal of time (read: money) on creating user profiles that would allow visitors of the site to connect with their peers, patients who share similar experiences. But that connection, they found, was key. As Burwell said in his presentation, users not only like to receive badges and virtual rewards, they like to hand them out as well.

Noting how willingly people update their status on social media sites like Facebook, sometimes with unrestrained detail, Burwell wondered how to bottle this social energy to get patients to openly share personal health data.

In my opinion, the limitations aren’t technical. After all there is nothing preventing users on Facebook from uploading a JPEG charting the number of miles they ran in a given month. Sure, social media sites could make tools available to users to facilitate the process, but that’s the easy part – there are already a number of product-related sites, such as Nike+, that do just this. The shift that Wolf describes, and that Burwell hopes for, is more philosophical, a change in the type of information we feel comfortable sharing with our friends, families, and colleagues.

So here’s my request: If you track any aspect of your life, whether your weekly running mileage, calories consumed by food, weight fluctuations, or daily blood glucose readings, share your data with your social network. Let’s see what happens.

Brian Mossop is a freelance science writer, and the Community Manager of the Public Library of Science (PLoS).  He has a Ph.D in biomedical engineering and postdoctoral training in neuroscience.  He has written for Wired, Scientific American MIND, Slate, and elsewhere.

This post first appeared at Thomas Goetz’s The Decision Tree.

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Hip LawyerZofran LitigationjimmuursPaxton PriceEllie Recent comment authors
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Hip Lawyer
Member

I really enjoyed reading this. I am not comfortable with sharing a lot of this information.

Zofran Litigation
Member

Very poignant, thanks for writing

jimmuurs
Member

Great article

Paxton Price
Guest

So share and share alike huh? Interesting

Ellie
Guest

Excellent article Brian.

Transvaginal Mesh Lawsuit
Guest

Well done, keep up the good work

Vaginal Mesh Lawsuit
Guest

Really appreciate the hard work, keep it up

Bryant
Guest
Bryant

I agree that social media is a great way to share aspects of ones life but sharing personal health data is something else. It would take a lot to be able to share ones personal health data with the “world” such as Facebook because that is opening themselves up to everyone and many would feel that makes them vulnerable. If the sites were blocked to only those who shared these health issues then that may be viable but then again who knows? Maybe a trend could be started.

John Irvine
Member

A great point, and one that is often neglected.

Social networks like Facebook and Twitter are great information sources – but data really helps to provide context for what we’re hearing – and more importantly validate what we’re getting qualitatively.

/ j

in-home caregivers
Guest

Yep, social network also helps for business promotional & website promotional.

Ano
Guest
Ano

I’d argue that the power of SM is the social, and data display is generally a poor way to communicate the social. Data displays are also easily misunderstood or manipulated. More powerful are words and stories, personal recommendation, experience or wisdom. Video is also a major and growing component of SM, and perhaps the most powerful of all, with it’s ability to convey information, images, & emotion.