Recipients selected for capacity to advance use of personal health data for research.
The Health Data Exploration project – based at the California Institute for Telecommunications and Information Technology (Calit2) and supported by the Robert Wood Johnson Foundation (RWJF) – has announced five recipients in its $200,000 Agile Research Project competition. The recipients, selected for their capacity to advance the use of aggregated and anonymous personal health data for research, are:
- Rumi Chunara, New York University, “Keeping Pace: Dynamic Assessment of Environment and Exercise Using Personal Health Data,” $50,000
- Julie Kientz, University of Washington, “When Am I At My Best? Passive Sensing of Circadian Rhythms for Individualized Models of Cognitive Performance,” $36,772
- Emil Chiauzzi, PatientsLikeMe (company), “From Self-Monitoring to Self-Experimentation: Behavior Change in Patients with MS,” $37,700
- Michelle De Mooy, Center for Democracy and Technology (non-profit), “Towards Privacy-Aware Research and Development in Wearable Health,” $50,000
- Eric B. Hekler, Arizona State University, “Exploring Strategies to Improve Acceptability and Usability of a Just In Time Adaptive Intervention via Incorporation of Proximity Sensors and a Smartwatch,” $25,528
The Agile Research Project grants were created to encourage collaboration among members of the Health Data Exploration (HDE) Network, and to generate new training and learning opportunities for the field. Established in June 2014 with a $1.9 million grant from RWJF, the Network brings together companies, researchers and other partners to strategize, coordinate and experiment with ways to use personal health data for the public good.
“We were delighted at the response to our call for proposals, and very pleased to see these projects emerge as the ones selected,” said Dr. Kevin Patrick, principal investigator of the HDE project. “These hold great promise to move the field of personal health data research forward. Taken together these projects are exploring how to leverage anonymous and aggregated data from companies like Fitbit, Jawbone and RunKeeper in ways that improve our understanding of health.”
Chunara’s project, for example, will develop a platform for users of RunKeeper devices to provide their data, which will then be used to better understand the relationship between the built environment and how types and amounts of exercise vary over time.
De Mooy will work with Fitbit to explore how companies can integrate responsible privacy practices into their internal research to protect users’ privacy while improving products and fitness results for customers. As the market leader in connected health and fitness, Fitbit has always been committed to protecting consumer privacy and keeping data safe, and only reviews anonymous, aggregated data for research purposes.
Hekler’s project will explore how new and emerging technologies, particularly the smartwatch and home-based sensors, can be used to provide highly personalized and context-appropriate support for being physically active, including marking times when a person will not want to be disturbed.
The HDE leadership adopted an “agile development approach” for the competition, encouraging participants to conduct applied research projects on personal health data within a short time frame (two to six months). The participants are expected to use a timely and efficient methodology (in terms of program scoping, solicitation, peer review, contractual negotiations) that matches the pace of industry. The winning projects also leverage collaborations with one or more other members of the growing HDE Network of researchers and companies in the personal health data arena.
”We see a tremendous opportunity for personal health data to improve our understanding of the connections between community environments, individual behavior and health,” said Lori Melichar from RWJF. “We expect that the Agile Research Projects from this first round of funding will help us better understand how to use data in a practical and meaningful way in our efforts to build a national Culture of Health.”
The HDE project, and its associated Network, is supported by Calit2, which is based at both UC San Diego (where it is known as the Qualcomm Institute) and UC Irvine. Last year, 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 medical and public health — provided adequate privacy controls exist.
The HDE Network brings together companies that collect and store personal health data, captured through the use of wearable devices, smartphone apps and social media, with researchers who mine the 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.