In 2009, Jack Chang went to the leadership of the Henry M. Jackson Foundation for the Advancement of Military Medicine and told them that there was a need for a program that did one thing and one thing only: managed information.
“Researchers were using old-fashioned ways to manage data. The majority was on discrete spreadsheets and word/pdf documents, and they were buried in massive data files that couldn’t be discovered or integrated with any other data sources,” said Chang. “Things were handled individually by different departments and there was no centralized mechanism to support research.”
So Chang got the go-ahead to create an information management program. Five years later, the program had grown to over 10 staffers, including a programmer, an administrator, and several bioinformaticians, biostatisticians and clinicians, all of whom were dedicated to make sure information was easily accessible and usable.
“People were dying for that kind of setup,” said Chang. “But they didn’t even know we could do it, because they all had different expertise.”
In June, Chang joined the CTSI, and working with researchers across the University, he’s hoping to help create a similar infrastructure. Tim Dye, director of biomedical informatics at the CTSI, said that Chang has a wealth of experience in several key areas.
“He will help us jumpstart some use-cases that show our institution’s capacity to tackle technical challenges, like handling very large, complex datasets, amassing and reusing administrative and clinical data for research purposes, and assuring that privacy and security are priorities in the management of research data,” said Dye.
Data management systems have been created by other departments, of course, so Chang has spent much of his first few months on the job meeting with other researchers and informaticists within the University, to ensure he isn’t duplicating the efforts of others.
“Instead, we should try to integrate those efforts,” said Chang, senior associate of biostatistics and computational biology and senior research informaticist for the CTSI.
Data management has become a priority for the CTSI and other areas of the university because making data accessible is only the first step. The data also needs to be catalogued and well described.
For example, many university labs have been collecting blood or tumor samples for years, but the sample quality can vary wildly according to specific study requirements. So the mere knowledge that those samples exist isn’t helpful to a researcher unless it comes with a lot of additional information.
“You have to know what kind of specimens you have,” said Chang. “Is there enough blood? Are there enough tumor samples? How are the specimens being processed? Have they been well preserved, and how? High quality samples lead to high quality research, but poorly managed samples are worthless.”
When Chang isn’t at the CTSI, you might find him working on his golf game or watching classic American cinema — Roman Holiday starring Audrey Hepburn is one of his favorites. His office is within the CTSI Director’s Suite; stop by and say hello.