Ernesto Ramirez

July 23, 2015

Yesterday evening I laced up my running shoes, connected my bluetooth headphones, turned on my Spotify playlist, and most importantly, hit “Go Running” on my Runkeeper app. About an hour later and I had run 6 miles at a decent pace of around 8 minutes per mile. And I knew this thanks to Runkeeper.

Founded in 2008, Runkeeper is designed to assist individuals who want to track their activities with GPS precision, whether that is walking, running, hiking, or cycling. If you’re moving outdoors, Runkeeper and similar apps, such as Strava or MapMyRun, use your smartphone’s GPS to pinpoint exactly where you are and how fast you’re moving. With all that data, you can train for your next marathon, discover new routes, and now, thanks to efforts by New York University researchers, take part in advancing public health research.

“We know from the existing literature that spatial characteristics like walkable neighborhoods and green spaces encourage exercise, but a lot of the details are still unknown.”

 

Last week, Dr. Rumi Chunara and her colleagues launched the Keeping Pace study. Over the next few months they hope to enroll participants who are willing to share their geo-located exercise data from Runkeeper. Because Runkeeper keeps a log of not only what you did, but where you did it, researchers hope to use the large amount of aggregated data to better understand physical activity patterns in communities around the United States.

“Typically, this type of research takes a long time and includes long, ardorous surveys or giving out GPS devices to participants,” said Dr. Chunara. “But with this type of data from apps people already use, we will be able to understand how the environment and exercise are related over more rapid and longer time periods.” With this data being contributed, the research team hope to understand differences in exercise choice between commuting and recreational activities, variation in activities among neighborhoods, and where people spend their time while being active.

Participants who enroll in Keeping Pace will be asked to complete a short demographic survey and then connect their Runkeeper account so researchers can access the type of activities they do and the GPS-based map associated with the activity. The Runkeeper data connection is being handled by a unique research platform, Open Humans.

A few years ago, Dr. Rumi Chunara was at a meeting hosted by the US Department of Health and Human Services. She was there to present and speak with colleagues about the growing importance of citizen science and crowdsourced data. There she met Jason Bobe, Executive Director of PersonalGenomes.org. They got to talking about some of their common insterests in open data, research, and new models for research participation. Later, when Dr. Chunara was designing GoViral, a project to examine how to leverage crowdsourced flu symptom information and diagnostics to predict illness risk, she ran into some issues with hosting and handling the amount of data participants were contributing. “It was obvious we needed some sort of platform to handle data,” said Dr. Chunara. She got back in touch with Jason, who helped her think about the issues and how to solve them.

This year, when it came to build out the infrastructure for the Keeping Pace study, Dr. Chunara decided to get back in touch with Jason and his colleagues, who were now developing OpenHumans.org. As we’ve written before, Open Humans represents a new way of thinking regarding researcher studies, participants, and the data being transferred between the two. The two teams, Open Humans and Dr. Chunara’s lab at NYU, worked together to develop an easy method for individuals to simultaneously allow researchers access to their Runkeeper data, and also maintain control over where and how that data flowed. Specifically, each individual who chooses to participate in the Keeping Pace study will be asked to create an Open Humans account, connect their Runkeeper account, and then authorize the Keeping Pace study to access their data. It sounds like a lot of work, but thanks to the designers and the use of Runkeeper’s API, it takes no more than five minutes to complete.

But why go through that trouble at all? Why not just have participants export their Runkeeper data and send it to the researchers? Why didn’t Dr Chunara and her colleagues build that data connection themselves?

Thanks to the proliferation of sensors, wearables, and smartphones, the ability to generate data about our lives is rapidly expanding. Pair that data with new efforts like the Precision Medicine Initiative and it’s easy to see the potential for researchers to understand our lives and our health in new and interesting ways. But what about the people who create that data? People, like myself, who strap on their phones when they go out for a run or log onto a website to report their flu symptoms. What do they have a right to in regards to their data? This is the question many researchers and scientific institutions are grappling with. But some have already taken a stand.

“What data are collected and how varies across research studies, but the question remains, ‘Who owns it?’ If someone is spending time generating then they should have control over it.”

Dr. Chunara and her colleagues chose to work with Open Humans because they shared the same perspective — participants should be in control of their data. “Open Humans has created an infrastructure that makes it easy to share and learn while respecting the participant and their data. That’s a noble motive, and it’s important,” said Dr. Chunara. Today, Keeping Pace is the first study to use Open Humans for data access and management for a research study. If successful, researchers may not only learn about exercise and the environment, but also about how studies that place an emphasis on participants’ data access and control may engage the public in new ways.

Keeping Pace is currently enrolling participants. If you’re a Runkeeper user and want to contribute your data to research, please visit the study website to learn more.

Keeping Pace was funded as part of the Agile Projects grants by the Health Data Exploration Network. If you’re a researcher, company, or individual interested in personal health data, sign up to become a network member. Membership is free.

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