Putting the People in Data

Nov 18, 2014, 8:00 AM, Posted by

A woman uses a laptop computer for data.

I recently had the privilege of attending the Data for Health listening sessions in Phoenix and Des Moines, initiatives that explore how data and information can be used to improve people’s health. The key lesson I took away: We cannot forget about the human element when we think about health data and technology.

I have to be honest: I attended these sessions with some admittedly naïve expectations. I half expected that the Des Moines airport would be in the middle of a corn field and that the conversation in the two sessions would focus on the technical side of health data – with people using terms like interoperability and de-identification. But I quickly learned that Des Moines is a flourishing city full of great running paths and people who are passionate about health data. The conversations in both cities actually focused not on the technical side of health data but rather on the human side.

While health data and technology are complex, the complexity of the the individuals and communities who generate and use them are far greater. At first glance, this human complexity may seem like the source of many health data problems but, as pointed out by the session attendees, it is actually the source of many health data solutions:

In a conversation in the Des Moines session about how to create incentives for individuals to provide health data, attendees stressed that one of the strongest leverages is the social incentive. Individuals will happily share data, they said, if we can get them to feel that the act of sharing their data brings them closer to others making them  part of a data-sharing community that includes their friends or family.

In Phoenix, attendees said that data is often not enough to lead to action. Most often, individuals have access to data but are at a loss as to what action to take or, even if they know the right action, lack sufficient motivation. One potential solution offered was to appeal to the human interest through narratives—using data to tell stories that both inform and motivate individuals to take action.

The listening sessions in Phoenix and Des Moines gave me a chance to leave my comfort zone and challenge my assumptions–both about health data and Iowa. I walk away from these sessions with a greater appreciation of the fact that health data does not exist in a social vacuum, and that behind each data point is a person.

Check out the Storify's we put together for both Phoenix and Des Moines where we’ve captured some of the conversations that took place online.