P R O G R A M P R O F I L E
Is there an app for that?
WHAT IF THERE WERE A TOOL that could determine the number of patients with a specific set of conditions to support a proposed study, even before it was submitted as an Institutional Review Board (IRB) application? Or, if a researcher could find collaborators with interests and expertise that complement a particular area of study? How about an easy-to-use, web-based application that would enable investigators to build and manage their own online research database? Can computer technology truly be a user-friendly, indispensable asset in the conduct of biomedical research?
Kent Anderson, associate director of the UC Davis CTSC Biomedical Informatics program and manager of research information technology (IT) for the UC Davis Health System, says “yes” – and he should know. Anderson was the original database architect for the UC Davis General Clinical Research Center, a National Institutes of Health (NIH)-funded program that was a precursor to the CTSC. At that time there was more of a distinction between IT and the interdisciplinary focus of biomedical informatics, which explores the most effective uses of biomedical data, information and knowledge for scientific inquiry. Anderson recalls that back then his work, building and managing databases, was very IT-focused. “Since the CTSA consortium began in 2006, we evolved to become a strong technology partner in numerous informatics and clinical research grants, leading to the implementation of innovative, cutting-edge tools specifically aimed at helping investigators conduct research.”
The UC Davis Health System chief information officer, Mike Minear, also serves as the director of the CTSC Biomedical Informatics program. Minear’s position overseeing Health System IT and Research IT establishes a platform to integrate biomedical informatics with other health system technology services, enabling enterprise-level assistance for all researchers.
The work of Tina Palmieri, professor of surgery and director of the UC Davis Regional Burn Center, exemplifies how this integrated effort helps researchers. Palmieri turned to the CTSC Biomedical Informatics team when she was funded by the Department of Defense, through the American Burn Association, to conduct a series of multicenter clinical trials that required extensive informatics and IT support. The CTSC Biomedical Informatics unit helped her utilize a tool called Cohort Discovery, along with the latest data collection and management technology. Cohort Discovery provides investigators with the ability to search patient data for study cohorts without compromising the Health Insurance Portability and Accountability Act and other privacy requirements. This allows researchers to access large, intricate de-identified datasets, making the process of designing studies and generating hypotheses more efficient and comprehensive.
Biomedical informatics: A core strength at UC Davis
This interdisciplinary field aims to effectively use biomedical data, clinical information and knowledge for scientific inquiry, problem solving and decision making to improve health.
Recent work has earned UC Davis numerous recognitions, including two Larry L. Sautter Golden Awards for Innovation in Information Technology from the University of California Office of the President:
Volunteer Registry (2012)
Cohort Discovery (2010)
Sam Morley, manager of the CTSC Biomedical Informatics group, emphasizes that his unit helps researchers identify the appropriate technologies to attain desired results. Researchers often arrive at the CTSC with just a vague idea of what data they need, how to identify a cohort of patients with specific characteristics, or how to gather data during a study. Consultation helps investigators gain understanding about the complexity of building a useful and compliant database.
“We show researchers why they should use a tool like REDCap, rather than Access or Excel,” Morley said. “Our data-retrieval team helps researchers hone in on exactly what they need to access patients from the electronic medical record (EMR) who meet study criteria. We can also point investigators to tools or resources to help them recruit volunteers for studies, collaborate with other researchers doing similar work, or determine ontology standards.” These biomedical informatics technologies and services exemplify the CTSC’s goal to support research across the clinical and translational spectrum.
The CTSC Biomedical Informatics team offers a variety of data management services and tools for investigators across the UC Davis campus who are initiating or implementing a study:
Cohort Discovery: A repository of patient information gathered from multiple sources, including electronic medical records, lab results and demographic data, enabling researchers to query data simultaneously and generate anonymous, de-identified research cohorts. http://www.ucdmc.ucdavis.edu/ctsc/area/informatics/ cohortdiscovery/
Consultation: Consultation to discuss data specifications, consistent terminology, text for use in the informatics sections of grant applications, and cohorts of de-identified data to establish study feasibility. Assistance in preparation of a data set for statistical analysis, including disambiguation of data sets, de-identification of patient records and merging data sets across projects. Request a consultation by emailing samuel. firstname.lastname@example.org
Data Explorer: An application that enables cross-campus queries of clinical aggregate data for 12 million patients across the five University of California medical centers. http://www.ucdmc.ucdavis.edu/ctsc/area/informatics/UCREX.html
EMR data retrieval service: Extraction of IRB-approved clinical data for retrospective analysis and prospective follow-up. Commonly used following a Cohort Discovery.
REDCap: A tool, developed by Vanderbilt University, with self-service online web forms that are used to create databases and surveys for clinical research. http://www.ucdmc.ucdavis.edu/ctsc/redcap/ (Research Electronic Data Capture)
Research Volunteer Registry: A self-reported dataset from the general population that includes demographic characteristics enabling researchers to identify a potential study population while maintaining anonymity. https://vr.ucdmc.ucdavis.edu/vr/ home.vhtml
SciVal: An application that scans through PubMed, Scopus and other national databases to isolate faculty researcher profile summary data, including research topics and publications. http://www.experts.scival.com/ucdavis/
Terminology services: A process to establish consistent terms used in research data sets.
Velos: A clinical trials data management system, used primarily in the UC Davis Cancer Center.