A series of reports from recipients of five Health Data Exploration (HDE) grants demonstrate a growing awareness and appreciation for systems and devices that monitor personal health data, advance the use of personal health data for research and encourage healthy living.
The HDE Network brings together companies that collect and store personal health data, captured through the use of wearable devices, smartphone apps, social media and other sources, with researchers who mine these data for patterns and trends and other strategic partners. Through a set of research projects using personal health data, the Network will identify policies and best practices for using these new forms of data to produce transformative knowledge about health.
The five “agile” project grants were intended to create new research opportunities, an open infrastructure and data sources for the research community and new training opportunities for the field. The studies were also designed to match the pace of industry, providing a timely and efficient methodology in terms of program scoping, solicitation, peer review, and contractual negotiations.
“These projects demonstrate the enormous potential inherent in the new digital health ecosystem,” says Kevin Patrick, principal investigator of the HDE project and a professor of Family Medicine and Public Health at the University of California, San Diego. “Ranging from context-aware technologies that can prompt improved behaviors to methods by which privacy can be protected while using wearable technologies, our network of researchers and companies are demonstrating important methodological advances in the area of personal health data research.” Kevin Patrick is also a member of the Center for Wearable Sensors at the UC San Diego Jacobs School of Engineering.
“This diverse set of projects highlight the range of opportunities we have today to use personal health data in a practical and meaningful way,” added Lori Melichar, Director at the Robert Wood Johnson Foundation. “As more toolmakers and researchers collaborate on unlocking the knowledge within all this data, we are confident that what they uncover will help accelerate a Culture of Health.”
The five HDE Agile Projects include:
1. Proximity Sensing
Dr. Eric Hekler and Sayali Phatak from the Designing Health Lab at Arizona State University partnered with Aaron Coleman from the company Small Steps Labs to examine how indoor sensors that detect a person’s location (as well as other contextual factors) might be useful for “just in time” mobile health interventions. Such customized interventions appear exactly when and where it would be most beneficial for enhancing or maintaining an individual’s wellness. To achieve this, the team developed an open-source iOS tool to utilize indoor proximity sensors for a variety of uses, such as personal tracking, supporting more context-aware research studies, or as a tool for part of a just-in-time intervention. Contact the Designing Health Lab for a build: click here. Code is available here
2. Multiple Sclerosis and Mobility Data
In July 2015, PatientsLikeMe completed a novel study with a major pharmaceutical company that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data. PatientsLikeMe researchers noticed that even after the study was done, approximately 25 percent of the original study participants continued to use their devices. That raised two questions: what were these patients doing with the devices now that the study was over, and how could they use them to regulate their own behavior? For their HDE Agile Project, the researchers proposed a 30-day study with Arizona State University to find answers. They conducted one-one-one interviews and built a behavior change course that helped people track their mood and activity, and apply daily personal rules to stick to activity goals. The study showed that patients valued and benefited from the help they received to define personal activity rules.
3. Privacy-Aware Research and Wearable Devices
This project was led by Michelle De Mooy of the Center for Democracy & Technology (CDT) and Shelten Yuen, director of R&D at Fitbit, the leader in the connected health and fitness market. It was a joint effort to understand internal research methods at Fitbit and produce guidelines and best practices for the industry on how such entities can conduct internal wellness research while also honoring the privacy and dignity of their user population. The co-authored report provides a look at the history of wearable health and examines the benefits and how to mitigate risks for users and society. It also takes an in-depth look at scenarios in which the business realities of wearable companies must be balanced with user privacy and ethical considerations. CDT and Fitbit presented the findings of the report at SXSW Interactive on March 14.
4. Dynamic Assessment of Environment and Exercise Using Personal Health Data
New York University Assistant Professor Rumi Chunara, in collaboration with Open Humans and RunKeeper, examined personal sensor data in aggregate to understand how the built environment relates to types and amounts of exercise over time. To facilitate the project, researchers constructed a platform to enable RunKeeper participants to provide their data for the study while maintaining data security and privacy (data from other data collection tools were also collected). Data continue to be gathered from a variety of activity types and places, with a goal of collecting data from 300 activities in one location. More information can be found here
5. Passive Sensing of Circadian Rhythms
Associate Professor Julie Kientz of the University of Washington partnered with Associate Professor Tanzeem Choudhury of Cornell University to explore, using personal health data, the relationship between technology use, performance and sleep. The three-week study assessed the dynamics of alertness throughout the day in real-world settings while also collecting self-reported and passively-sensed data, such as body clock type, sleep information and the usage of stimulants such as caffeine. Based on the data, they demonstrated that the aforementioned variables influence alertness across the day. They also demonstrated that mobile app usage logs – particularly apps related to productivity and entertainment – align with trends in alertness performance and are correlated with adequate and inadequate sleep.
The HDE project, along with its associated Network, is supported by the Robert Wood Johnson Foundation. and the California Institute for Telecommunications and Information Technology, which is based at both UC Irvine and the University of California, San Diego (where it is known as the Qualcomm Institute). In 2014, HDE issued a report titled Personal Data for the Public Good, which found that many people who track health-related data are interested in sharing that data with researchers in medicine and public health — provided adequate privacy controls exist.