SXSW starts it off right!

Interactive is just what implies: interaction. From an early session on Making it Rain in Non-techy Markets to Who Owns the Data? Self-Tracking to Health 2.0, I am already contemplating questions I’d never considered, approaching new ways of viewing ID in the cloud, and meeting French entrepreneurs starting home-cooked meal websites. This is the beauty of south-by.

If you want to bring in new customers, Ram Menon of TIBCO Software states “You have to make it easy. You have to make it beautiful. You have to make it mobile.”

Once you’ve done that, how do you identify what you will focus on first? According to Joelle Senter of dotloop, you start with the “place of the greatest pain” for the customer, developing and working to alleviate that pain.

Dave Yarnold, ServiceMax CEO acknowledges that launching in the industry is hard, but suggest you “find the one early adopter and treat the, like gold.” Joelle agreed and even provided a real world example from her own experience that highlights the wisdom of the approach.

Three great tips in any market, but especially for a non-traditional approach to traditional markets and needs.

On my way to the next session, I met a CEO of a Tanzanian company who’s sister is running a school and we promised to connect virtually to share digital resources for educators. I’ve already sent my email and twitter handle to another country’s inbox.

By far, however, the most thought provoking session I attended is Who Owns the Data? Self-Tracking to Health 2.0. John Wilbanks of Sage BioNetworks (hippie side of things) and Martha Wofford (recovering hippie) of Aetna, addressed the major challenges of the consumer owning or accessing their own Data.

Chic, hip intro with musicians playing and singing, Elvis-style, “Give me my damn data… It’s all about me so it’s mine.” Wish i had that URL! [Editor: found it! See above.]

The challenges facing consumers in trying to gain access or ownership of their data are myriad and interdependent on a number o f areas and factors. According to Martha, the challenge resides in how broken the system is, and how fragmented the care (provided) is if the data is not held by the consumer.

One issue John brought up was that we tend to associate ownership with property rights, but Data doesn’t work like that. Can’t really open source your data because it’s transitive, moves around. So who owns it?

His answer: Whoever has it. It’s held as a trade secret by whoever has collected it; in health, it’s controlled for privacy issues. This makes it hard for us to get our data from those who own it because they hold it as a trade secret.

If people had access (not ownership) to their health data, what good would it do them, in the current medical morass? How do you make data actionable for individuals? How can we make it personal, easy to share, portable and useful?

A step in some direction of this debate about medical data, access and ownership is the Blue Button, based on US congressional legislation that requires you will have access to your data in the next 12-24 months. John has viewed a Blue Button file and it’s by far the ugliest file he has ever seen. While there are steps to move it out of unreadable txt files to csv and html, the question remains: what do individuals do with the data once they have access?

By providing it to big companies who can analyze the data seeking trends and lifestyle changes that could lessen potential sickness further down the road, they could reap benefits from the results of the data analysis. Mapping your genome for a hundred bucks is just around the corner, but until the sample size explodes, what good is having that data about yourself? Knowing you have a propensity for something in the future doesn’t help unless you also have access to data that tells you what to avoid, what to change. A larger data pool is needed to make individual data more relevant to the individual.

Quoting the presenters of this thought provoking session: it’s trivial to say, with digital data, one copy to the individual, one for us. That’s easy. Access and control? Usefulness!? That’s hard.

Demographics, data, health insurance, and your medical needs…. still in the making!

 

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  1. […] In SXSW starts it off right!, Cat reported on the “Who owns the data?” panel. The big takeaway: for now, data custody has all the power of ownership with little of the responsibility. […]

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