designing a research request system for the self-generated health information exchange presenter:...
DESCRIPTION
Problem Setting ●A consortium of research organizations created a web- based Self-Generated Health Information exchange (SGHIx) to facilitate research. ●Individuals using personal health monitoring devices (e.g. FitBit, GenieMD, etc.) can share data with SGHIx. ●Researchers can access these datasets through a virtual marketplace for research purposes. Scenario – Dr. G. is in the pipeline for a $2 million NIH grant on heart disease and physical activity in middle-aged men; the grant application deadline is next Wednesday! He’s almost ready, but needs to find research data. He heard about SGHIx and feels excited. However, the challenge is how to access SGHIx data. 3TRANSCRIPT
Designing a Research Request System for the Self-Generated Health Information Exchange
Presenter:Michael Chen
(https://www.unc.edu/~michen)
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Problem Setting● A consortium of research organizations created a web-based
Self-Generated Health Information exchange (SGHIx) to facilitate research.
● Individuals using personal health monitoring devices (e.g. FitBit, GenieMD, etc.) can share data with SGHIx.
● Researchers can access these datasets through a virtual marketplace for research purposes.
Scenario – Dr. G. is in the pipeline for a $2 million NIH grant on heart disease and physical activity in middle-aged men; the grant application deadline is next Wednesday! He’s almost ready, but needs to find research data. He heard about SGHIx and feels excited. However, the challenge is how to access SGHIx data.
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System Environment Cultural Model
Problem Description – Use Case
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Problem Description● Access to health data in the exchange is hindered by
the absence of research request sub-system.● The design of a research request sub-system is needed
to allow use of data by researchers.
OBJECTIVE: Design a research request system that automates the process researchers use to generate a request for data access within an organization.
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How does the system work?The central issue is the management of the intermediate states of research data requests. A request must do the following:
● Enforce policies for approving researcher requests, sensitive to the type of data (e.g. aggregate, de-identified, request only, etc.) involved (Caruso et al., 2014).
● Explain the purpose of the request, the intended data use, and proposed confidentiality protections.
● Encompass various possible responses from the individuals whose data is being accessed, as they may or may not approve a researcher request or approve the request with additional requirements and conditions.
T. P. Caruso, L. K. Li, J. M. Presnell, R. G. Capra, A. Kaul, G. Marchionini, and L. L. Dimitropoulos, "Self-Generated Health Information Exchange (SGHIx): Protecting and providing benefits for aggregating personal health data," 1st Int. Workshop on Big Data Discovery & Curation at ASM SIGKDD Knowledge Discovery and Data Mining Conf. 2014, in press. 7
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How the System Works
How does the designed system framework resolve the problem?
A researcher is now able to do the following:● Define a research cohort and access
aggregate data.● Estimate costs of data use.● Secure assurance for data availability.● Commit payment for data used.● Access data after receiving funding.
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