Data sharing for research between Hershey and University Park gets easier

Data sharing for research purposes between Penn State's Hershey and University Park campuses is now easier. Through support of the Penn State Clinical and Translational Science Instituteexecutive committee and the Office of the Vice Dean for Research and Graduate Studies, data use agreements are no longer needed in certain circumstances when private health information is transferred from the Hershey campus to University Park.

A data use agreement is a contract negotiated between two parties when sharing data for research purposes. It defines the data, sets the terms and conditions on the use of the data, and describes the rights and obligations of the parties involved. After extensive discussions involving research leadership, University legal counsel and human subject protection personnel, it was determined that if research participants have been fully informed of what data will be shared and with whom and have given consent, data use agreements are not needed when transferring data from Hershey campus to University Park. The College of Medicine’s standard consent form includes authorization to release Health Insurance Portability and Accountability Act (HIPAA)-protected information.

A data use agreement is still required by HIPAA if the research participant did not give authorization, such as for a retrospective chart review where the IRB waives consent.

“Facilitating the ability for Penn State researchers in Hershey and State College to work together is a major priority,” said Dr. Leslie Parent, vice dean for research and graduate studies, Penn State College of Medicine. “Working across different disciplines leads to important new insights that would not have been possible otherwise. We envision a community of basic, translational, clinical and computational researchers working in the same space to transform health-related discoveries. The ability to share data more easily is an important step toward achieving that goal.”

Sheila Vrana, associate dean for research at the College of Medicine, and member of the Clinical and Translational Science Institute’s executive team, said the institute leadership continues to explore ways to facilitate collaboration between campuses. 

“We consider this a big win for our investigators and research subjects to ease data transfer between campuses,” Vrana said. “Research participant consent, along with the fact that most data can be de-identified for the purpose it is needed, means that we should rarely have to do a data use agreement with University Park campus."

Andrea Burkholder, Office of Research Affairs, College of Medicine, said, “This streamlines the process for collaboration and data sharing between the two campuses — it makes it easier and faster. Negotiating data use agreements can take a lot of time. This helps researchers avoid some of the issues related to the process slowing down their study progress.”

“Penn State Clinical and Translational Science Institute is working to remove barriers and to promote collaboration across the university,” said Dr. Lawrence Sinoway, director of the institute. “Doing so helps bring health research out of the science laboratories and into new treatments, technologies and ways to diagnose disease. I’m pleased we were able to be part of this positive change that helps Penn State researchers conduct their research more efficiently.”