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Collaborating with the Virginia Cancer Plan Action Coalition

Virginia Cancer Registry

Recognizing that cancer surveillance data often are not used effectively by cancer prevention and control programs, the Virginia Cancer Registry (VCR) increased collaboration with the Virginia Cancer Plan Action Coalition (VA CPAC), the state cancer prevention and control coalition. Coalition members prepare the state cancer plan, work on prevention and control projects, and educate the public about cancer.

Effective collaboration requires the ability to communicate. However, cancer surveillance experts, with a focus on epidemiological analysis, speak a language characterized by its opacity. What is an age-adjusted rate, for example, and why are such rates useful in contexts where crude rates are not? When is a crude rate useful? What is a 95% confidence interval, and how should rates that have wide confidence intervals be interpreted?

Similarly, prevention and control specialists, with a focus on setting community goals and organizing and carrying out activities, may speak past the surveillance people. How does community participatory research fit into the scientific method? Why are such efforts necessary and how can the results be valid, since this research method appears to be "soft science" to many surveillance people?

A key to establishing effective communication means learning another's vocabulary. Although such learning would ideally be reciprocal, there are vastly more prevention and control experts (including citizen volunteers, citizen groups, and so on) than surveillance experts. The practical solution is for surveillance specialists to learn the concepts, principles, priorities, and work of prevention and control people.

VCR staff recognized the communication problem and set out to reduce it by collaborating with CPAC; attending CPAC forums; discussing priorities, methods, and goals with anti-cancer activists; learning to negotiate networks of community leaders; and knowing key informants and influential advocates. These groups can explain what numbers they need, and their questions expose needs that central registry staff should fill. They can educate surveillance staff and increase the usefulness of central registry data to their work.

For example, CPAC held a local forum in April 2009 at Mountain Empire Community College near the town of Big Stone Gap in southwest Virginia. In the audience were public health employees; staff from Mountain Empire Older Citizens, a vigorous social services agency; members of anti-cancer groups; and interested citizens. The VCR director designed a talk for that day to teach a little about cancer statistics and learn much about prevention and control at the local level.

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