April 18, 2019 | 60° F

Rutgers researcher finds scientists do not use clinical data

Photo by Casey Ambrosio |

Brian Strom, chancellor of Rutgers Biomedical and Health Services, published a study which found few researchers used publicly-accessible clinical data, but does not yet know why this is true.

Developing medications often requires lucky breaks or dedicated research, but pharmaceutical companies used to hold necessary patient data private. A recent push by GlaxoSmithKline aims to help researchers by publishing anonymous data, helping them learn about existing trials and what did or did not work. 

Brian Strom, Chancellor of Rutgers Biomedical and Health Sciences, was appointed chair of the oversight committee of this project, which took place in May 2013.

“Patients are taking risks by being included in such studies. It behooves us to use the resulting data as much as possible,” Strom said. “People had been clamoring for years for access to these data.”

While Strom cites the ethical imperative of making such data available, his recent study published by The New England Journal of Medicine found the database is widely underused, despite its availability.

“While there were over 200 submissions approved to use the data, there have been extremely few papers and even presentations that have emerged from that use,” Strom said.

Many other companies followed suit after GlaxoSmithKline by making their clinical data available, Strom said. He collaborated with researchers to publish a summary of their work with the new database for two years.

Strom said he was surprised by the deficit of researchers taking advantage of this data.

“This was free access to enormously valuable data, which seemed ethically obvious to make available and use,” Strom said. “It was interesting how infrequently after all that, it was used.”

The database was underused partly due to the lack of transparency in the field, said Sue Shapses, a professor in the Department of Nutritional Sciences. Many researchers do not know about the information available to them, she said.

Interpreting the data correctly would require one of the original investigators to assist in the analysis process because new researchers do not know the dataset as well as the original researchers, Shapses said.

Shapses, who sees a similar underuse of data in her own department, said performing a secondary data analysis takes time and skill.

“It is not so simple to use these datasets and it is not easy to think of a ‘burning’ question to ask when you are not the one who conducted the study in the first place,” she said.

To investigate the underuse of pharmaceutical data, Strom and his colleagues sent surveys to researchers who were granted access to the database, but because they got very few responses, their conclusions are still speculation.

Regardless of difficulties in putting older data to use, making the data available itself builds confidence between researchers and consumers, Shapses said.

Strom said he and his colleagues surveyed researchers who had access to anonymous clinical data, to see if they could understand why people did not use the datasets. They received few responses.

Strom rotated off the committee and will no longer participate directly in the project. He suggested conducting a pilot study of the system before implementing it, if such a large-scale database were considered again.

Bushra Hasan is a School of Arts and Sciences sophomore majoring in cell biology and neuroscience. She is a correspondent for The Daily Targum. Follow her on Twitter @bushrafhasan for more.

Bushra Hasan

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