Data Sharing Built With BRICS

By Benjamin Ross

August 21, 2017 | 2017 Best Practices Awards | According to the Biomedical Imaging Research Services Section (BIRSS) of the National Institutes of Health (NIH), the sharing of data is crucial for modern biomedical research. To assist researchers in the collection and application of data for research studies and clinical trials, BIRSS has developed a customizable informatics system, the Biomedical Research Informatics Computing System (BRICS), which uses common data element (CDE) definitions, standards, and user-friendly interfaces for uploading, accessing, and analyzing data.

The system is the result of efforts from the NIH; CSRA, a Virginia-based IT services company; and Sapient Government Services, a consulting company based out of Arlington, Virginia.

BRICS is developed to create secure, centralized biomedical databases to support the research efforts of its individual users in order to accelerate scientific discovery by aggregating and sharing data using Web-based clinical report form generators and a data dictionary of CDEs.

The BRICS system has impressed numerous people in the research industry, including the judges of the 2017 Bio-IT World Best Practices Awards, who collectively awarded the project with the Judges’ Prize at the recent Bio-IT World Conference and Expo in Boston.

John Greene, Chief of Bioinformatics at CSRA, told Bio-IT World that the fact that you can have different groups with different clinical assessments that can load those into the BRICS system and in reasonably short order get new forms adapted and be put into the system is probably the number one advantage. “Before this people were essentially reinventing the wheel,” he said.

The developers of the BRICS system are building on concepts initially developed 10 years ago for the National Database for Autism Research (NDAR) system. The Army's Medical Research and Material Command reached out to them in the hopes of developing a research database for Traumatic Brain Injury (TBI). Matthew McAuliffe, Chief of BIRSS and was the team leader of that project, saw an opportunity to expand the system to more an umbrella approach to research informatics.

“We said, ‘OK, let's take a step back. Let's build a modular system that we can use for TBI, but we'll keep it modular, generic, and easily instantiated,’” BIRSS wrote in their entry for the Best Practices Awards.

BRICS users are primarily NIH and Department of Defense (DoD) grantees at universities, clinical centers, and institutes who work on the multiple large projects associated with BRICS. In the five years since the development of the system, BRICS has been used in six independent systems, ranging from the Federal Interagency Traumatic Brain Injury Research (FITBIR), to Parkinson’s Disease Biomarkers Program Data Management Resource (PDBP).

The BRICS’s system’s implementation of a wide range of research standards can be linked to its compliance with FAIR data principles, McAuliffe said. These principles are an integral part of the concepts behind the NIH Data Commons, and it is likely that datasets hosted on BRICS instances will become part of the Commons ecosystem in the future.

There are six major components that allow the BRICS system to adapt to FAIR principles while still being able to aggregate and share massive amounts of informatics data and research. One of the major components is BRICS’s data dictionary, which provides a high level of data standardization, making it easier for researchers to compile and search large databases from diverse fields.

Both McAuliffe and Greene say it is oftentimes the case that one study uses a set of identifiers to label a certain factor of their study, gender for instance, and another study will use a completely different set of identifiers to label the same factor. The result is confusing and chaotic to say the least. “And that problem gets worse and worse the larger the metadata is,” Greene said. “If you have a significant number of data elements and they have to be harmonized across studies, it gets to be really labor intensive.”

The BRICS data dictionary has two main components to address this issue: data elements, which have names, precise definitions according to NIH and Clinical Data Interchange Standards Consortium (CDISC) standards, as well as clear enumerated values, and form structures, which are used to create electronic Case Report Forms (eCRFs) or associated in studies for submitting research data.

Another interesting component to the BRICS system is its Global Unique Identifier (GUID). Data submitted to the system are de-identified so that the identity of a subject can’t be made readily available by secondary data users. The GUID is a computer-generated, random, alphanumeric code that is unique to each research participant, and is generated onsite at the centers collecting data using the GUID client software.

Even with the major advantages of the BRICS system, McAuliffe is still quick to point to room for growth. “One of the biggest areas for growth is the analysis of the data,” he said. “Right now we’ve just been really focused on getting data into the system; we haven’t really been able to spend a lot of effort doing some of the basic analysis of the data locally. Once you download it you can do your own analysis, but we’d like to provide something else on the site.”