The Health Data Exploration project, sponsored by the Robert Wood Johnson Foundation, is building a network of academic, public sector, and corporate partners working together to catalyze the use of personal health data to conduct research that benefits the public good.
Individuals are tracking a variety of health-related data via a growing number of wearable devices and smartphone apps. More and more data relevant to health are also being captured passively as people communicate with one another on social networks, shop, work, or do any number of activities that leave “digital footprints.” Self-tracking data can provide better measures of everyday behavior and lifestyle and can fill in gaps in more traditional clinical or public health data collection, giving us a more complete picture of health.
The HDE team works on a variety of projects that demonstrate the value of using personal data in research and create reusable templates, policies, and infrastructures for using new forms of data. Core research projects address cross-cutting issues relating to personal health data including exploring barriers to data sharing (including privacy and consent issues) and addressing methodological challenges that arise from these new forms of data.
The HDE project has also funded a number of agile projects focused on questions related to personal health data and conducted by small, multidisciplinary teams of network members. These shorter-term projects offer the research Network an opportunity to make incremental investment to open new research opportunities, create open infrastructure and data sources for the research community, and help create new training opportunities for the field. You will hear about the latest developments in both of these types of projects at our workshop.
The HDE Network also hosting a series of webinars on topics related to personal health data research, including IRB and informed consent, research ethics, privacy, and N of 1 trials.
To learn more about the HDE project please join us at Health 2.0’s conference for an interactive dialogue on Monday, October 5, 9-11:30 AM, in Ballroom H. We would like to hear your ideas about how we can accelerate the development of new collaborative relationships between companies and researchers that will be critical if we are to realize the benefits of new opportunities such as the Precision Medicine Initiative or the NIH and the ongoing efforts in NIH’s Big Data to Knowledge program. You’ll hear insights from industry leaders about how their companies are collaborating with researchers and learn about opportunities for public-private sector partnerships — and why it’s good for business.
Finally, join our network! It’s free and will ensure you stay up-to-date on our projects, webinars, and new developments in personal health data. Sign up here!
Alexandra Hubenko is program manager at Qualcomm Institute, UC San Diego division of Calit2. Kevin Patrick, M.D., M.S. is the Director of the Center for Wireless and Population Health Systems at Qualcomm Institute, UC San Diego division of Calit2. Matthew Bietz is an Assistant Project Scientist UC Irvine.