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7th Annual AMIA Invitational Health Policy Meeting December 12-13 ...

7th Annual AMIA Invitational Health Policy Meeting December 12-13 ...

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Project Overview Purpose/Type of Data Project Features Results Challenges<br />

Using EHRs to recruit for clinical trials. Ohio State Univ.<br />

Wexner Medical Center (OSUWMC), Columbia Univ.<br />

Medical Center, and Weill Cornell Medical College.<br />

NLM-funded. Proposes that an improved longitudinal<br />

health record (comprehensive patient clinical summary)<br />

can improve screening for clinical trials.<br />

Integrating Data for Analysis, Anonymization, and<br />

Sharing (iDASH). Project of National Center for<br />

Biomedical Computing (NCBC), at the Univ of California,<br />

San Diego. Aims to enable data sharing for collaborative<br />

scientific discovery and analysis through secure<br />

cyberinfrastructure housing data repository with sharing<br />

permissions controlled by data contributor, privacy<br />

policies that protect and enable data sharing, and<br />

analytic tools and web services. Data repository<br />

enables developers to integrate heterogeneous data<br />

form national biomedical, clinical and informatics<br />

communities. 10<br />

<strong>AMIA</strong> <strong>Invitational</strong> <strong>Health</strong> <strong>Policy</strong> <strong>Meeting</strong> 20<strong>12</strong><br />

Page 38 <strong>12</strong>/10/20<strong>12</strong><br />

Innovative approach to<br />

integrate data in EHRs to<br />

generate a longitudinal<br />

medical history to<br />

accelerate recruitment of<br />

patients in trials<br />

Heterogeneous data from<br />

national biomedical, clinical<br />

and informatics<br />

communities. Protected<br />

health information on<br />

health conditions includes<br />

EHRs and genomic data.<br />

Also hosts data sets that do<br />

not contain personal health<br />

information including<br />

physical activity sensor data<br />

and de-identified medical<br />

images.<br />

“Information fusion,”<br />

combines processing of<br />

data stored in uncoded,<br />

narrative text; extraction of<br />

structured data from<br />

unstructured data; merging<br />

of multiple data sets; and<br />

combination of episodic<br />

events to create medical<br />

portrait.<br />

Cyberinfrastructure on top<br />

of a HIPAA-compliant<br />

private cloud; portal to<br />

algorithms, open source<br />

software, data, and<br />

training. Data modeling<br />

standards used when<br />

possible; maps data to<br />

existing component<br />

schemas. Data Use<br />

Agreement wizard<br />

facilitates data sharing.<br />

Electronic consent<br />

management system<br />

embeds education<br />

resources.<br />

Project underway for 3 years<br />

at OSU. Research efforts<br />

focused on<br />

extracting/annotating data<br />

from OSUWMC EMR;<br />

performing studies on<br />

medical event coreference<br />

resolution; and temporally<br />

ordering medical events<br />

extracted from clinical<br />

narratives. NLM funding will<br />

support sharing of data<br />

across institutions.<br />

iDASH platform maturing<br />

into secure, privacypreserving<br />

scalable<br />

environment for integration<br />

and analysis of genomic,<br />

transcriptomic, phenotypic,<br />

behavioral and<br />

environmental data. Reduces<br />

burden on data owners and<br />

users by allowing outsourcing<br />

of data sharing process to<br />

specialized team that<br />

understands research needs.<br />

Initial approach is to<br />

collaboratively develop<br />

research methods, but<br />

evaluate research<br />

independently without sharing<br />

data. In the future, data<br />

sharing agreements will be<br />

established among the 3<br />

medical centers.<br />

Addressing need to balance<br />

data privacy and data sharing<br />

through privacy policies and<br />

processes to regulate data<br />

sharing and novel privacy<br />

preservation algorithms.

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