Who Owns the Data? Self-Tracking to Health 2.0
Saturday, March 9
12:30PM – 1:30PM
Sheraton Austin, Creekside
In today’s world, it’s not enough to only consider how web and smart phone data influence your life. What about the data being collected about your health? In the past, data was paper based and technically was owned by the hospital. Now that everything is digital, the question of data ownership is being considered by several different parties.
John Wilbanks, the Chief Commons Officer at nonprofit biomedical research organization Sage Bionetworks, is working to connect people with data about their health and bodies to researchers who can then turn it into useful information.
“In a world where this computation model operates on data, you have to get data from somewhere. One way is through large corporations, which tends to be difficult. The other way is to get it through the people,” explained Wilbanks. “The overarching question of who owns healthcare related data is one that many are not aware of, or have even considered.”
During the panel “Who Owns the Data? Self-Tracking to Health 2.0,” Wilbanks along with Martha Woffard, VP of the Consumer Platform at Aetna insurance want to people to be informed about this type of data and how it can affect people’s lives and pocketbooks. Both individuals will bring a positive view on why citizens should own their own data but for different reasons. Woffard will bring the perspective of empowering patients by making data open and available, which will help enable an app ecosystem that will benefit the people and their health. Wilbanks’ role is to advocate for people to be aware this data exists and that they have a right to own, or at least know it exists.”
“Health records and lab data will all be digital within 18 months,” explained Wilbanks. “From a consumer context, you have no idea what is being collected on you, or how it will be used.” Wilbanks wants to bring awareness to these debates currently brewing. “People don’t realize there are business models and procedutes being shaken out right now, a debate is being decided right now.”
Wilbanks explained further how this healthcare data will be swaped and cross examined. An insurance company will know whether you are at the gym or in the fast food drive-thru line because of our smart phone.”
Wilbanks makes the point that once insurance companies know how your actions are affecting your health, they will increase premiums because you will be at a much higher risk.
Progressive insurance companies like Aetna have realized this predicament and are taking actions to give people a more pro-active choice in the matter. “Your health is a complicated sense of actions that data can provide proxies for,” said Wilbanks. “Aetna is finding the right solution to engage with the individuals they cover so that they are empowered agents of their own healthcare data.”