Patient Preferences for Collecting and Repurposing Genetic, Consumer and Health Care Information

NIH Sep 13, 2017 | R01

Patient Preferences for Collecting and Repurposing Genetic, Consumer and Health Care Information

Principal Investigator(s): GRANDE, DAVID T;

Institution: University of Pennsylvania

FOA Number: PA-14-276

Abstract

PROJECT NARRATIVE When Americans interact with everyday technology such as mobile applications and websites, they leave behind digital footprints that can reveal a great deal about individual health. The proposed research will define the emerging ?health-relevant digital footprint? and evaluate consumer preferences around use of information from inside and outside the health care system. This research is relevant to public health because it will enable the development of new approaches to health and genetic privacy that balance the privacy interests of consumers with the immense research and clinical opportunities embedded in emerging big health data.

FUNDING AGENCY:

Funder:
NIH

Institute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTE

Funding Type:
R01

Project Number:
R01HG009655

Start Date:
Sep 13, 2017

End Date:
Jun 30, 2021

PROJECT TERMS:

Address, American, base, behavioral health, Big Data, Biomedical Research, blind, Caring, Clinical, Clinical Data, Commercial Sectors, Common Rule, Computerized Medical Record, Consequentialism, Consumer Preferences, contextual factors, Data, data reuse, Data Sources, Databases, Development, digital, Ecosystem, Elements, Environment, Environmental Health, Equilibrium, Ethics, Failure, Future, Genetic, genetic information, genetic privacy, Goals, Health, health care delivery, health data, health goals, health insurance, Health Insurance Portability and Accountability Act, Healthcare, Healthcare Systems, Individual, insight, insurance claims, interest, Internet, Interview, Left, Legal, Life, Link, Measures, Medical, Medical Genetics, Medical Records, medical research, Methods, mobile application, monitoring device, novel, novel strategies, Outcome, Patient Preferences, PMI cohort, Policies, population based, population health, Positioning Attribute, Precision Medicine Initiative, preference, Privacy, privacy protection, programs, Public Health, Public Sector, Qualitative Methods, Records, Registries, Regulation, Research, Research Activity, Risk, Risk Factors, social, social media, Source, System, Technology, Testing, web site, willingness

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