Coding Cancer Research Accurately
One of the truly unique aspects of NCI is its close relationship to the cancer community, a relationship made possible by the special authorities granted by the National Cancer Act of 1971. Those authorities include the mandate for robust and frequent communication about the Institute's research priorities and activities, including its support of research grants pertaining to organ sites.
In that light, I wanted to raise awareness about a worrisome new initiative that will change how NIH institutes and centers (ICs) track and report the research they fund. A result of requirements in the NIH Reform Act of 2006, these changes in grant activity reporting are intended to establish stronger, more transparent processes for how all ICs manage their research portfolios through coding of individual awards. It's a laudable objective, but as the old adage says, "The devil is in the details."
In approximately 1 year, NIH plans to roll out the Research, Condition, and Disease Categorization (RCDC) electronic coding system. This system is designed to categorize and catalogue the projects and grants supported by NIH using one central database. The RCDC will include 340 research categories, each with new definitions that will be used to electronically sort ICs' research projects and programs.
In presentations at the most recent meetings of the National Cancer Advisory Board (NCAB) and the NCI Board of Scientific Advisors (BSA), representatives from the NIH Office of Portfolio Analysis and Strategic Initiatives (OPASI) explained how the RCDC will work.
While members of both NCI boards and NCI senior leadership support efforts to create more sophisticated portfolio analysis tools, concerns were raised about whether this new centrally managed coding system could adequately code and track "cancer research." Of particular concern is how basic science will be reported under the RCDC, which as currently formulated, does not adequately capture basic research as a category. Basic discovery is fundamental to understanding the underlying biology of carcinogenesis and tumor progression - and accounts for a substantial cancer research investment that deserves accurate coding and reporting. Complicating basic science reporting further is how to report projects, for example, on signaling pathways that might impact several cancer types. Until questions surrounding coding of basic research are more clearly resolved, there is a real concern that the RCDC could potentially miss, and therefore underreport, NCI's support of basic research.
NCAB and BSA members correctly noted that the complexity of cancer is not easily categorized electronically. NCI has developed a robust system for coding and reporting the research projects it supports, using experienced indexers who ensure that a given project's contributions are adequately captured and reported. This system, which has been refined by NCI over many years, allows dollars attached to each research project to be prorated over specific categories. A real concern by NCI with the proposed RCDC system, which does not prorate projects, is the likelihood of significant misrepresentation of exactly how cancer research dollars are spent. It is difficult to establish an electronic system that can adequately replace expert coders, trained to carefully evaluate each grant, particularly when trying to categorize complex cancer biology research programs.
Board members also voiced their concern that the RCDC cannot account for a large amount of NCI funding that goes to support the extramural cancer research infrastructure, including the NCI-designated Cancer Centers, Cooperative Groups, and NCI's Specialized Programs of Research Excellence (SPOREs).
In short, there is a fear that the RCDC could, in fact, result in a less accurate, less transparent accounting of cancer research support. Finally, the boards felt that the long-standing processes established by NCI for communicating this information to the public, Congress, and the advocacy community would be lost - resulting in confusion and apprehension, especially among the numerous cancer advocacy organizations.
NCI leadership has shared these concerns with OPASI staff and requested that "cancer research" be exempted from the RCDC reporting requirements, as will be done for "AIDS" and "biodefense" research. We are currently working with OPASI leadership to determine if processes can be established so that the coding and categorization that NCI already does can be incorporated into the RCDC system and extended to the proper coding of cancer research across the NIH.
We will keep the community informed of activities and progress in this critically important area. We want to reinforce the importance NCI places on being as open and accountable as possible to the public, as mandated in the National Cancer Act. We firmly believe, however, that this activity must be led by NCI.Dr. John E. Niederhuber
Director, National Cancer Institute