"We didn't have a database to store clinical trials, except for various homegrown tools built by and for individual investigators. Furthermore, we had multiple applications for our clinical work from different vendors, which created serious interface problems."
- Laura Hutchins, M.D.
Winthrop P. Rockefeller Cancer Institute at the University of Arkansas for Medical Sciences
Sound familiar? No doubt that many leaders in cancer centers are nodding heads in agreement with Dr. Laura Hutchins' description of infrastructure challenges at the Winthrop P. Rockefeller Cancer Institute at the University of Arkansas for Medical Sciences (UAMS). And while Dr. Hutchins, Professor of Medicine and Director of Hematology/Oncology, and others at UAMS realized addressing the IT issues would be a critical part of their organization's path forward, technology itself was just a part of their solution.
Despite the hurdles it faced as a developing cancer center, UAMS is now in the process of adopting one of the most extensive caBIG® implementations in the United States. The deployment success achieved at UAMS to-date shows the strength of the caBIG® platform in supporting data sharing and enabling research collaboration, as well as UAMS' skillful navigation of the myriad of issues surrounding a large-scale implementation.
Though UAMS had been aware of caBIG® previously, the undertaking began in earnest when Dr. Hutchins and her colleagues attended the caBIG® Annual Meeting in 2006 and knew immediately they were interested. "With our current vendors, we were playing 'Mother, May I?' trying to get system issues to work out," describes Dr. Hutchins. Cheryl Lane, Director of Information Technology Research and Development Systems, who also attended the Annual Meeting continues: "We would get three-quarters of the way through an implementation, and realize that a commercial system wouldn't work in our environment. We concluded that our solution had to be open source."
After learning about the caBIG® open source platform, Dr. Hutchins and Ms. Lane set forth on an aggressive plan to bring caBIG® solutions to UAMS. UAMS is now in the process of deploying a range of caBIG® tools, including caArray for microarray data management, caTissue for biospecimen management, the cancer Adverse Events Reporting System (caAERS) for adverse event reporting in support of regulatory requirements, the Patient Study Calendar (PSC) to help manage trial participant schedules, Cancer Center Clinical Participant Registry (C3PR) to handle trial participant registration, and caXchange to address data integration. Certainly the organization has faced challenges during the deployment process-but surprisingly, the biggest lessons learned from the caBIG® deployment have little to do with technology. Beyond technological know-how, caBIG® requires a shift in culture and attitude in order to create a support system well beyond the IT department.
Find and Enlist Champions on Campus. Dr. Hutchins emerged as a strong advocate for caBIG® at UAMS, encouraging her colleagues to be involved with and support caBIG®, and helping to communicate the benefits of the program across the institution. "In previous deployments with other tools, our biggest challenge was the absence of a champion on campus. To have Dr. Hutchins as our champion has been huge," adds Ms. Lane.
Dr. Hutchins' colleagues in other departments have joined her as stewards of the caBIG® vision of collaboration and interoperability. Dr. Thomas Kieber-Emmons, Associate Director for Research Development at the Cancer Institute, UAMS, has taken on a role that he describes as a "rah rah" person. "My job is to get people thinking about and using standards-based tools," he notes.
Encourage the collaborative spirit. caBIG® is predicated on the notion that research is accelerated when the entire cancer community works together. The concept of collaborative research is gaining greater acceptance, and UAMS recognized that it must reinforce this central position in order to realize the full benefits of caBIG®. Dr. Kieber-Emmons summarizes: "Our vision for collaboration is best described as 'community informatics'-a bench to community approach."
"Everybody is aware that data sharing is needed and in the near future, the biggest advantage you can achieve will be through collaboration. If everyone agrees with that starting point, we can embrace things like data standards and data sharing."
"It's clear that you have to give information back to the community," says Dr. Kieber-Emmons and adds that caBIG® allows organizations to do that in a more organized way.
One of the early roadblocks to collaboration identified at UAMS is what Kieber-Emmons describes as "narrow thinking," or thinking in a way that is limited by a researcher's particular area of expertise, departmental goals or own experience. In the current research environment where specialization in one field is the norm, it can be a challenge to expand beyond one's own horizon to share and learn from others. UAMS has rejected this approach in favor of nurturing collaborative research enterprise.
Throughout the organization, there is an appreciation of this need to learn from colleagues studying other types of cancer. Damir Herman, Ph.D., Assistant Professor of Medicine, Myeloma Institute for Research and Treatment (MIRT) expands on the point, "Even if we run our own experiments and resolve myeloma in a few years that would be narrow-minded because the benefits of our work would not be spread around. I think the adoption of caBIG® tools will broaden the view of cancer."
Explain the benefit.. "Researchers can ask questions that perhaps they weren't able to ask before," says Dr. Herman. This is true at the Myeloma Institute, where he hopes caBIG® will support the integration of proteomic and genomic data. "All of a sudden, the field of vision becomes much wider," explains Dr. Herman. "With this technology, we can at least try to understand the translational modifications-why some genes are expressed where there's no protein traces and the other way around. With this research approach, we can actually target the genes that are responsible for protein expression or non-expression and kill the beast right there at the beginning."
Rally Research, Clinical and IT around a Single Vision.Ultimately, none of these lessons will usher in change unless individuals have a clear vision of what they are working towards.
"The ultimate vision for research at UAMS is a seamless integration that will allow us to have an system to keep up with the identifiers but allow the researchers to look into clinical research; tissue bank data; and even some of the research lab genomic data and proteomic data; in a de-identified way," says Dr. Hutchins.
Ms. Lane further notes, "We needed a solution that was going to work for everyone-we could no longer consider solutions that were just going to work for one area or one specialty. We needed a campus-wide solution."
Keeping those goals in mind helps drive implementation efforts in a systematic way and allows for more consistent communication to stakeholders across the campus.
For those who follow the lead of UAMS, there is certainly wisdom to be found in their approach. The vision and ability to integrate research, clinical and IT to adopt caBIG® tools is allowing UAMS to make great strides towards an interoperable infrastructure. Ultimately, these technological advances will enable greater integration of data to drive additional discovery.
Click here to view the UAMS video.
