Supporting planning for a program to make people-generated real world/real time health data available to researchers
This grant supports planning for a national program to accelerate the use and evaluation of novel open methods for knowledge generation and research in public health and health care. Diet, physical activity, mood, sleep, weight, heart rate and other parameters can now be easily captured via wearable devices, smartphones and other tools. Individually and collectively, companies are amassing ever-increasing quantities of real world/real time data relevant to health. There may be considerable scientific value in making these data available to researchers. The research team for this project, led by Kevin Patrick at the University of California, San Diego, will conduct a landscape analysis of participants in this real world/real time space. The team will seek input from leaders from the National Institutes of Health, Quantified Self, Centers for Disease Control and Prevention, National Science Foundation, Kaiser Permanente, technology venture funds, and corporate researchers and innovators. The team will conduct interviews with individuals, patients, clinicians, device- and platform-makers, researchers, and policymakers. Issues to be addressed include how to bridge the "two worlds" of academic research and the set of mostly private and often small technology companies that hold these data; whether there are unique scientific, methodological or ethical issues involved in such research; intellectual property of research findings; how and where these data intersect with more traditional forms of medical and public health data; and how to address privacy and confidentiality. Expected deliverables include: (1) sample data-use agreements for researchers and companies; (2) templates that can be completed by a company that describes what types of data/meta-data it has and what questions it is interested in having researchers answer; (3) samples of data-donation forms/language that can be used by individuals who are interested in opening up and donating their data for purposes of research; and (4) case studies that provide examples of research envisioned in this initiative.
Amount Awarded $170,610.00
Awarded on: 3/22/2013
Time frame: 4/1/2013 - 3/31/2014
Grant Number: 70808