For Immediate Release
March 16, 2015
Quantified Self Labs has been awarded a $600,000 grant from the Robert Wood Johnson Foundation to provide support for efforts to improve access to self-collected data, by bringing together stakeholders and producing independent news and research that highlights data access issues.
Building on over seven years of work helping individuals access and interpret their own data and share their knowledge with others, Quantified Self Labs is working with a wide range of individual users, commercial toolmakers, and science leaders to broaden awareness of the need for individual and community access to data.
Today, millions of people are taking advantage of tools that allow them to make accurate observations about their activity, health, and environment. Data collected in the ordinary course of life holds clues about some of our most pressing questions related to health and wellbeing. The potential value of this data dwarfs that of conventional health records. Rich personal data streams offer new ways to measure the effects of today’s practices. They are also a source of new ideas. But significant barriers stand in the way, including: nonstandard data formats; records isolated in data silos, lack of best practices for sharing data, unanswered questions about the personal, social, and business risks, and lack of regular dialog between among diverse stakeholders.
“The Robert Wood Johnson Foundation is working with many partners to build a Culture of Health in the U.S., and in that culture of health, people are attuned to the factors that influence their health and the health of their communities,” said Stephen Downs, Chief Information and Technology Officer at the Robert Wood Johnson Foundation. “The explosion of data on day-to-day life creates tremendous potential for new insights about health at both the personal and population levels. To realize this potential, people need access to their data — so they can use services that surface the connections between symptoms, behaviors and community environments and so they can choose to contribute their data to important research efforts.”
The QS Access Program has its origin in the Quantified Self Public Health Symposium, held in April of 2014, which ignited much needed discussions about the role of personal health data in the research setting and beyond. (Details from that meeting can be found in the published report.) This new Robert Wood Johnson Foundation grant will support two years of additional meetings to bring together device makers, scientists, and public and community health researchers to explore how access to data can improve public health. The grant will also support the development of a dedicated blog channel focused on fostering awareness and engagement with issues and ideas related to personal data access, and its role in advancing personal and public health.
“We believe that when individuals, families, and communities are able to ask their own questions of their own data, everybody benefits,” said Gary Wolf, Director of QS Labs. “We look forward to doing our part to build a culture of health with the support of the Robert Wood Johnson Foundation, and we invite anybody who has an access story to tell to get in touch.”
About Quantified Self LabsThe Quantified Self is an international community of users and makers of self-tracking tools, who share an interest in “self-knowledge through numbers.” This includes people who are doing personal projects as well as developers, hackers, and entrepreneurs. There are more than 100 Quantified Self groups in more than 30 countries. QS Labs, LLC, is a California-based social enterprise that supports the Quantified Self movement worldwide. Our mission is to inspire meaningful discoveries about ourselves and our communities that are grounded in accurate observation and enlivened by a spirit of friendship.
About the Robert Wood Johnson Foundation
For more than 40 years the Robert Wood Johnson Foundation has worked to improve health and health care. We are striving to build a national Culture of Health that will enable all to live longer, healthier lives now and for generations to come. For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.
Quantified Self Labs