Going grassroots with science

For Robert Houlihan, D.H.A., FACHE, director of research administration and operations at VCU Massey Cancer Center, the true effectiveness of any project or trial hinges on translating findings beyond a clinic’s walls or a journal’s pages.

“We need to make an impact in the lives of citizens throughout Virginia and take the science to the streets,” he said.

Throughout the past decade, Massey initiatives designed to do just that — such as the Rural Cancer Outreach Program and Clinical Research Affiliation Network — have continued to expand and thrive, but in 2008, Massey saw an opportunity to engage community partners on a more intimate level.

With $1 million in funding from the Virginia Tobacco Indemnification and Community Revitalization Commission, Massey set out to increase its capacity for cancer research in rural Virginia health districts. However, researchers soon recognized a need to get back to the basics and listen to what members of those communities had to say about the disease’s impact on their lives and the effectiveness of the treatment options and support available to them.

The year 2010 brought a second Tobacco Commission grant to Massey, this one worth nearly $2.4 million, and while that money funded a handful of projects — including a health economics study, a series of smoking-cessation public service announcements and a lifestyle and cancer survival study — chief among them was a needs assessment led by Massey clinical research affiliation coordinator Carlin Rafie, R.D., Ph.D.

Working in the Mount Rogers, Pittsylvania/Danville, Piedmont and Crater health districts — all of which were determined to be among the most adversely affected by cancer in the state — Rafie tasked her team with producing in-depth, encompassing portraits of these communities that could then lay the groundwork for future cancer research, prevention and control.

“As a National Cancer Institute-designated cancer center, we have an obligation to bring scientific findings to the community,” Rafie said, “but we also have to approach it the other way. We need to be in those communities and bring back information that informs research.”

While Rafie and her team studied the cancer burden in each district, as well as the level of infrastructure available for care and support, they also hired people in each region, from diverse business, medical and nonprofit sectors, to serve as coordinators who could help facilitate interviews and lead focus groups with health care and hospice service providers, community cancer survivors and residents.

After 12 months of data collection, researchers pinpointed the specific needs of each district while also identifying some very distinct, overlapping issues across the board, including shortages of oncology and primary care services, as well as support groups for patients, survivors and caregivers.

Additionally, the districts expressed a desire for cancer information centers, improved access to tobacco cessation, diet and exercise programs and more effective communication strategies for patients, physicians and oncologists.

With these needs illuminated, Houlihan said, researchers are now crafting subsequent project proposals to make a true impact in these communities. Additionally, the coordinators are disseminating the results to key community organizations to stimulant local action and draw resources into the health districts to address the needs. Rafie added, should Massey or other institutions wish to repeat this community-based cancer needs assessment model in other health districts in the state, it now has a comprehensive, effective system in place to do so.