University of Virginia Leads Statewide Collaboration Effort to Broaden Access to Medical Research Data

Dec 18, 2019 | Big Data, HIPAA, Informatics, Medical Research, Real-world data, Real-World Evidence, Regulatory

University of Virginia Leads Statewide Collaboration Effort to Broaden Access to Medical Research Data

The National Science Foundation will award $2.5 million into the University of Virginia to form the Virginia Assuring Controls Research Data (ACCORD), a collaborative effort of the University of Virginia (UVA) and University of Virginia’s College at Wise, leading a team of researchers from 11 Virginia universities to build a high-performance computer system for hosting research using data that must be projected by law. 

Why is ACCORD building the computer system?

Often, small university researchers and principal investigators have fantastic research ideas but the investigator needs access to big medical data sets. The federal government could provide the data, plus grant money to fund the project, but only if the university has set up a sophisticated, expensive computer system needed to protect the data. The university doesn’t have that kind of computing infrastructure, so the research is dead on arrival.  

NSF Major Research Instrumentation Program

Hence why the NSF funded the University of Virginia. Part of the NSF’s Major Research Implementation Program, according to a recent press release, it is the first project in the United States to address growing disparities in university’s’ access to protected data for research—such as records that originate in the U.S. 

A Multifaceted Problem

On the one hand, the universities need access to very expensive, high-end computing capability for handling big data, while security regulations are expanding making matters even more complicated. For example, the Health Insurance Portability Accountability Act (HIPPA) mandates protections for patients’ health information when used in medical research. To meet those regulations, it requires costly infrastructure for computing and compliance. Moreover, the Federal Information Security Management Act, enacted to protect government information, now covers federally funded researchers and institutions. The recent UVA-originated press release suggests that a statewide solution is needed because the federal government is becoming more protective of data requested by non-governmental entities. In Virginia, researchers throughout the state must prove that they can control and secure the data, hence meeting the vast and expanding body of government regulations.

Small Universities hit Hard

Small clinical and medical research universities get disproportionately impacted. For example, they often cannot seek research opportunities because they do not have the wherewithal to offer the required infrastructure for the protection of increasingly large diverse sets of data.

The Development Team

The team put together to build the shared system included UVA and UVA-Wise in the lead as well as The College of William & Mary, George Mason University, James Madison University, Norfolk State University, Old Dominion University, Radford University, Virginia Commonwealth University, Virginia Tech and Virginia State University. They will create a shared, high-performance computing system to support research that uses sensitive data. The new system will be designed for changes based on evolving regulations.

Who is leading the Initiative?

·         Ronald R. Hutchins, vice president for information technology at UVA (lead investigator)

·         Scott Bevins, associate provost for information services, UVA-Wise

·         Tho H Nguyen, senior research associate officer, UVA Engineering Department of Computer Science (serves as grant manager for grant)

·         Andrew Grimshaw, UVA computer science professor—helped conceptualize the project

ACOORD: Exploring a Collaborative Model for Success

The ACCORD model—all of these schools coming together to generate a common research infrastructure, offering federated access to protected data infrastructure—if successful, will represent a powerful collaborative model for other states to follow. Note, UVA has been a leader in research, increasing sponsored research funds by 75% from 2016 to 2019.

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