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Editors:

Joseph Cummings
Charles Dizard
Nancy B. Whelan

Informatics Today is a publication of the University of Pittsburgh Department of Biomedical Informatics

The University of Pittsburgh is an affirmative action, equal opportunity institution. Published in cooperation with the Department of University Marketing Communications.

UMC6162-0507

Knowledge is Power: Center for Clinical and Translational Informatics Working to Make “Bench to Bedside” a Reality

In the many battles that make up the medical profession’s war on disease, one potent weapon has proved to be both elusive and vast: information.

Despite the wealth of data that researchers have gathered for decades, only a fraction of its potential for analysis has been met, because there has been limited organization of the information—until now.

The University of Pittsburgh’s Department of Biomedical Informatics (DBMI) Center for Clinical and Translational Informatics (CCTI) is one of 12 sites selected to transform clinical research as part of an $83.5 million National Institutes of Health (NIH) Roadmap grant known as the Clinical and Translational Science Award (CTSA) from the National Center for Research Resources (NCRR). The goal of CTSA is to make the clinical and translational research data repositories interoperable among the 12 centers, as well as to foster data and tool sharing via biomedical informatics, so that researchers across disciplines and across the country can collaborate more effectively on the more efficient development of better treatments and cures.

“The type of national scale collaboration CTSA is attempting aims at transforming the institutions, the research, the scientist, the health practice, and the community practice.” —Nancy Whelan

“What CTSA aims to accomplish is critical to the success of clinical and translational research, particularly clinical trials,” acknowledges Nancy Whelan, director of communications and development for the University of Pittsburgh Department of Biomedical Informatics. “The type of national scale collaboration CTSA is attempting aims at transforming the institutions, the research, the scientist, the health practice, and the community practice.” Previous attempts like the Cancer Biomedical Informatics Grid (caBIG) have provided valuable lessons learned and more importantly a rich community of collaborative informaticists.

In the past, clinical researchers have tended to resist data sharing for several reasons, often stemming from publication issues, tenure track concerns, intellectual property issues, material transfer agreements, or federal regulations mandating new guidelines for patient consent.

There also was no standardized method for collecting data and no vocabulary nor ontology services to act as the “Rosetta Stone” for clinical research. Some clinicians favor Excel spreadsheets; others “off the shelf” databases and some still use paper notebooks. These all raise concerns about compliance with current privacy and confidentiality guidelines for stored patient information.

“Getting everybody literally on the same page through effective communication and alignment of incentives is the answer as a recent retreat of the University of Pittsburgh’s Clinical and Translational Science Institute taught us,” says Whelan, who notes that junior investigators, who are more appreciative of the value of collaboration, are also more comfortable using standardized computer programs. They are also going to need to use the same terminology, common data formats, and address key workflow related issues. Fortunately, this new five-year NIH grant to DBMI to help form CCTI carries a strong incentive to change.

“It’s a fresh, new emphasis being put on what a lot of people have been trying to do already,” says Whelan. “A lot of people have recognized this need, and now we have the opportunity that an NIH Roadmap Initiative like CTSA provides to do something about it.”

Changing the culture of clinical and translational research is the other challenge, but Whelan believes the center is up to the task. While everyone is anxious to publish and get on the fast track to tenure, increasingly, principal investigators understand that collaboration yields more data and can lead to more efficient and higher quality findings with broader impact to the practice of medicine.

“I’m very positive that we will be able to do this work. People are more ready for it,” she says. “Collaborative efforts are being rewarded by the various NIH funding agencies and beyond.” An important advantage that DBMI has is a robust set of critical data de-identification services developed by Melissa Saul and Greg Cooper, vice chair of DBMI. De-identification is critical to compliance with the Health Insurance Portability and Accountability Act (HIPAA) of 1996, which tightened up privacy restrictions in health information. More importantly, the DBMI team has been instrumental in developing “honest broker” software, policy, and procedures for removing barriers to clinical data for use in research. The workflows the CCTI team has developed for CTSA ensure efficient access to information.

In summary, the newly formed Center for Clinical and Translational Informatics in DBMI is an exciting development pulling together the many strengths of our faculty and staff. It leverages funding from multiple resources and will be a cornerstone of our research programs at DBMI in the years to come. We are actively conducting a national search for a leader for this effort and welcome our friends to assist in this effort. Stay posted (and in touch) as we will update you on DBMI’s progress for this important effort in the newsletters and e-mail communications that follow.

If you are interested in receiving a copy of our CCTI grant (or those from other funded sites), please e-mail Nancy Whelan at whelannb@upmc.edu or call her at 412-623-3860.

For more information, please see these Web sites:
Center for Clinical and Translational Informatics (CCTI)
Clinical and Translational Science Award (CTSA)