Gaining Insight from Patient & Person-Generated Real World/Real Time Data
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Abstract
Background: Diet, physical activity, mood, sleep, weight, heart rate and other parameters can now be easily captured via wearable devices, smartphones and other tools to yield insights about personal health and wellness. Among those with disease, tracking such things as symptoms, responses to medications and other parameters, can help patients and physicians better tailor medical treatments. Supporting these trends is an increasingly complex ecosystem of providers of health technology-based goods and services. Stakeholders range from solo developers of new apps for smartphones, to large corporations in the computer, consumer electronics and telecommunications industries. Individually and collectively these companies are amassing ever-increasing quantities of real world/real time data relevant to health, much of which may be lying fallow in terms of availability to individuals and researchers interested in gaining new insights about contributors to individual and population health. There may be considerable scientific value in making these data available to researchers in medicine, public health and the social and behavioral sciences. Moreover, wider availability of these data might spark a new cadre of “citizen scientists†who can add to what traditional health researchers do.
Objective: This presentation will provide an update on a new Robert Wood Johnson Foundation (RWJF) initiative that is examining this issue.
Methods: An initial landscape analysis was conducted via interviews of participants in this space based on criteria such as types of data collected, populations served, health states addressed, public health burden, and value in terms of potential health benefits derivable from research. Input has been sought from several sources including leaders from groups such as the NIH, Quantified Self, CDC, NSF, Kaiser, technology venture funds, and corporate researchers and innovators. Interviews have been conducted with stakeholders across the entire “data chain†of patient/person-generated data (P2CD): individuals, patients, clinicians, device and platform makers, researchers and policy-makers. Issues 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 other forms of medical and public health data; data quality; and privacy and confidentiality.
Results: Areas explored and to be updated in this presentation include: a) sample data use agreements for researchers and companies; b) templates that can be completed by a company that describes what types of data/meta-data they have and what questions they are interested in having researchers answer; c) 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 d) case studies that provide examples of research envisioned in this initiative; and e) recommendations for further efforts to stimulate research using P2CD.
Conclusions: This presentation will address how this initiative is complementing other RWJF sponsored projects that aim to accelerate the use and evaluation of novel open methods for knowledge generation and research in public health and healthcare.
Objective: This presentation will provide an update on a new Robert Wood Johnson Foundation (RWJF) initiative that is examining this issue.
Methods: An initial landscape analysis was conducted via interviews of participants in this space based on criteria such as types of data collected, populations served, health states addressed, public health burden, and value in terms of potential health benefits derivable from research. Input has been sought from several sources including leaders from groups such as the NIH, Quantified Self, CDC, NSF, Kaiser, technology venture funds, and corporate researchers and innovators. Interviews have been conducted with stakeholders across the entire “data chain†of patient/person-generated data (P2CD): individuals, patients, clinicians, device and platform makers, researchers and policy-makers. Issues 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 other forms of medical and public health data; data quality; and privacy and confidentiality.
Results: Areas explored and to be updated in this presentation include: a) sample data use agreements for researchers and companies; b) templates that can be completed by a company that describes what types of data/meta-data they have and what questions they are interested in having researchers answer; c) 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 d) case studies that provide examples of research envisioned in this initiative; and e) recommendations for further efforts to stimulate research using P2CD.
Conclusions: This presentation will address how this initiative is complementing other RWJF sponsored projects that aim to accelerate the use and evaluation of novel open methods for knowledge generation and research in public health and healthcare.
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