Are better outcomes worth a loss of privacy?

October 15, 2014
Kim Johnson
NIATx Deputy Director
ATTC Co-Director

As some people know, about half of my work for the UW-Madison is devoted to developing and testing mobile applications to help people manage various behavioral health conditions. I am fascinated by the idea of developing mobile responses tailored to specific needs that arise in the course of daily lives and by mobile phone apps’ potential to help people change their behavior. (I think there’s an application for organizational change too, but haven’t started working on that yet!) The way to tailor mobile responses to specific, immediate needs is to take all of the data that mobile devices collect and then use machine learning algorithms to uncover behavior patterns that might not be apparent otherwise.
Anyone that has heard me speak in the past two years has heard me wax poetic on the possibilities that Big Data offers for healthcare. But for the past six months or so, I’ve been wondering about the negative side effects of this potential revolution in care. Particularly, I am worried about whether giving up privacy is a reasonable trade-off for the results we might be able to achieve. 
People have clearly displayed their willingness to abandon privacy with smart phone apps. I know I have. Every time you download a new app, you get a list of all the information it collects, both from the app and from your phone. When you click the button to “accept these conditions” you can then happily use the app to find a new restaurant, check how many steps you took that day, track calories you consumed, or play the latest version of Angry Birds. 
But have you actually read the list of all the personal information you release when you download a new app? Have you wondered why it’s being collected, and how it’s being used?
In a Big Data world, the more data available, the better the decision the computer can make. And we want to collect everything, because we don’t yet know what is important. In treating addiction, for example, we don’t yet know what combination of experiences may be a precursor for a lapse, or if we can identify a set of predictors for relapse. So we want to collect as much information as we can to help figure out the patterns. The positive outcome will be better treatments. The negative side effect is that we will have a lot of data about a person’s whereabouts, activities, and relationships. 
Maybe, like many people, you say so what? Or maybe, like me, you get a little paranoid.
I graduated from college in 1984. We all had read George Orwell’s dystopian novel and discussed how life was and was not like his prediction. Today, 30 years later, we’re much closer to the level of individual and data tracking predicted in the novel than we were in 1984. And while the recent Edward Snowden episode lets us know that government can and does capture information from our communications, commercial entities now have more data about us than any writer of dystopian fiction could have possibly imagined in the early part of the twentieth century. 

If mobile applications get us to eat better, exercise more, increase our memories and logical thinking, manage our medications and our disease symptoms, help us live healthier lifestyles overall—all while adding convenience to our lives, is the loss of privacy about our thoughts and actions a reasonable trade off? 
Or am I a just being a fearful Cold War baby in an era of openness? 

What are your thoughts on the cost benefits of the current trends in mobile health?

Kimberly Johnson, NIATx Deputy Director and ATTC Network Coordinating Office Co-Director served for seven years as the director of the Office of Substance Abuse in Maine. She has also served as an executive director for a treatment agency, managed intervention and prevention programs, and has worked as a child and family therapist. She joined NIATx in 2007 to lead the ACTION Campaign, a national initiative to increase access to and retention in treatment. She is currently involved in projects with the ATTC Network and NIATx that focus on increasing implementation of evidence-based practices, testing mobile health applications, and developing distance learning programs for behavioral health. 

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