News from the Field

NIH Advocates Use of Plain Language for Research Grant Applications

The NIH Office of Extramural Research (OER) is asking current and future research grantees to use “plain” professional language in titles, abstracts, and statements of public health relevance in their NIH grant applications. “It is vital that the NIH makes information about the scientific projects we fund available to the public and Congress in a way that clearly relays the value and potential impact of the research on public health,” OER stated.

Tips for writing in a plain language style include:

1. Remember that the audience reading the title, abstract and public health relevance statements may not be scientists.
2. Avoid scientific jargon or technical writing.
3. Communicate the bigger picture. State what you are proposing, why it is important, and explain the potential impact on public health.

Additional information about plain language grant submissions is found at http://grants.nih.gov/grants/plain_language.htm.

NCI Surveying Integrative Medicine Programs in the US

OCCAM and NCI’s Office of Communications and Education (OCE) are conducting a brief, but comprehensive survey and inventory of integrative medicine programs offered by NCI Cancer Centers and other academic institution-based health centers in the United States.

“There are current knowledge gaps in the literature, on the Internet, and within and among health centers in the US regarding research, clinical, and outreach/communications programs in cancer complementary and alternative medicine,” noted CDR (U.S. Public Health Service) Colleen Lee, M.S., CRNP, AOCN®, nurse consultant with OCCAM. To address those gaps, NCI will survey and interview integrative medicine staff from among the 66 NCI-designated Cancer Centers and the US members of the 46 institutions in the Consortium of Academic Health Centers for Integrative Medicine (CAHCIM).

The NCI survey will inventory the research, clinical practices, and educational programs in integrative medicine offered at the health centers. In the research area, OCCAM staff intend to use the information gained in this project to expand their awareness of the key experts within those institutions and the extent to which they are collaborating with clinical CAM resources. “We believe there is probably some research overlap, and the institutions can benefit from knowing one another’s work, and maybe save some time and funding and advance science a little more quickly,” said CDR Lee. OCCAM will also develop an interactive map of integrative medicine centers in the US which will allow researchers, practitioners, and educators to easily find additional information about the institutions.

SEER and OCCAM Explore a Potential New Collaboration

The use of complementary and alternative medicine by cancer patients is widespread and growing. Recent studies have estimated that between 30%-70% of cancer patients use one or more therapies that fall under the CAM umbrella, and this number will likely continue to increase. To date, the studies estimating CAM use among cancer patients in the United States have come from individual institutions, or have aggregated many such smaller reports. Currently, no national cancer registry collects detailed data on CAM for use by the research community.

This data gap may soon be addressed. Recently, OCCAM and NCI’s Surveillance, Epidemiology and End Results (SEER) (http://seer.cancer.gov/) program have begun a discussion on the feasibility of expanding SEER’s data collection on CAM use. The 17 current SEER-participating cancer registries cover approximately 28% of the U.S. population, providing a rich data resource for researchers studying all aspects of cancer incidence and treatment.

“Access to better CAM data in SEER would be of great significance for CAM research, because SEER provides access to such a large database of the American population,” said Isis Mikhail, M.D., M.P.H., Dr.P.H., director of OCCAM’s Extramural Research Program, who is leading the OCCAM side of the discussion. “CAM use is becoming more and more prevalent among cancer patients and CAM research is growing, so it would be beneficial to have more specific information about what kinds of CAM patients are using,” she added.

In April 2010, Dr. Mikhail and Ms. Antoinette Percy-Laurry from SEER presented the concept of a potential OCCAM-SEER collaboration at the annual meeting of the National Cancer Registrars Association (NCRA). Over 300 registrars from all over the United States attended the session. “The registrars are seeing a lot of CAM use, and it’s something that appears to be of growing interest,” Dr. Mikhail recounted.

Currently, SEER collects all CAM use data under a single code in the ‘Other Therapy’ category. This single code provides no specific information other than the fact that a treatment potentially classified as CAM was used. Following the NCRA meeting, Dr. Mikhail and Ms. Percy-Laurry proposed a set of new codes that could better represent the diverse types of CAM used by cancer patients. (See sidebar at left.) The proposal is being considered by several technical and policy review groups responsible for setting standards for cancer registry data systems in the United States.

CAM data collection could potentially pose a special challenge for SEER, which is very much dependent on medical records, primarily from hospitals, explained SEER Director Brenda K. Edwards, Ph.D. Physicians do not always ask patients about CAM use and patients often do not think to volunteer that information or may choose to not do so, for fear that a doctor might tell them to stop using CAM treatments.

“There are many domains of CAM, and some aren’t that likely to be recorded in a medical record,” said Dr. Edwards. “If we can’t find it in a medical record we can’t collect the information through routine operations. And if we can’t collect the data we don’t know if it’s something that didn’t happen or if it did happen and just didn’t get included in the medical chart. We need to get a better handle on what is recorded versus what is actually happening” in terms of CAM use.

Such an understanding would require a pilot project in one or two SEER registries, which could potentially happen in 2012. A pilot project would begin with officially defining the elements to be collected and vetting them with other national registry groups.

“Once the data to be collected has been defined, we like to gather some background information on how easy or hard it is for a registrar to collect this data,” explained Dr. Edwards. “Basically, we would be asking what would you collect, how would you do it, and if can you find it.”

Some well-established CAM interventions that are often offered within cancer centers – such as nutritional interventions, exercise therapy, massage, and acupuncture – may be easier than others to capture, she said. But even those items will challenge registrars, since it may not always be clear whether patients began use of these therapies after a cancer diagnosis, or if they had already integrated them into their lifestyle.

“These issues aren’t insurmountable, but it’s a big effort to create a new data element that’s collected with integrity,” said Dr. Edwards. “We want to collect data that are meaningful, and have confidence in the quality of the data,” she concluded.

Following the 2010 meeting of the National Cancer Registrars Association, representatives from OCCAM and SEER proposed new categories for data collection on CAM use in the United States. This proposal is being considered by several technical and policy review groups responsible for setting standards for cancer registry data systems in the U.S.