Fighting Cancer at the Grassroots

Dr. Eugene Lengerich is helping communities across rural Pennsylvania and New York reduce their risks of cancer

By Melissa W. Kaye

Ayear ago Dr. Eugene Lengerich received an unusual e-mail from a member of the Tartan Terrors, a Celtic comedy and music group in Canada that also tours the United States. The group wanted to donate money to an organization that Lengerich directs—the Northern Appalachia Cancer Network (NACN), a community-academic partnership to reduce the cancer burden among the medically underserved in rural Pennsylvania and New York. Lengerich was certainly grateful. But he couldn’t help wondering: How did performers in Canada find out about us?

Dr. Eugene LengerichDr. Eugene Lengerich leads the Northern Appalachia Cancer Network, one of the oldest community-academic partnerships for cancer prevention and control in the country.

It turned out the entertainer’s grandmother lives in an Appalachian county in Pennsylvania, and when she asked for her grandmother’s advice about possible places to donate money, her grandmother suggested the NACN.

This was especially gratifying for Lengerich, associate professor in the Department of Public Health Sciences at the Penn State College of Medicine and director of community outreach and education at the Penn State Cancer Institute. Lengerich explained: “Local groups make an impression on local people.”

Lengerich is the recipient of this year’s Faculty Outreach Award for his work leading the NACN, one of five regions of the Appalachia Community Cancer Network, a program of the National Cancer Institute. One of the oldest community-academic partnerships for cancer prevention and control in the country, the NACN was created in 1992 and today is composed of 13 coalitions and seven clinical partners, including hospitals, cancer centers and clinics, that join with academia to develop and deliver best practices for cancer reduction to their communities, considered to be at increased risk. Communities are at increased risk because they either have a high rate of cancer, high rate of behavioral risks or limited access to care.

“There are more than 100 active members of these coalitions,” said Lengerich. “They understand their community, where people congregate, what interests people, how to motivate people, where the need may be greatest. They are passionate to reduce cancer risk in their neighborhood.”

Lengerich’s devotion is also strong, serving as a guiding voice to the process since 2004. “Through his efforts, our coalitions have developed a greater understanding of the following research methods: cancer surveillance, intervention research as it impacts us and intervention research with primary care practices in our rural communities,” said Marcia Anderson, member of the Lawrence County Cancer Coalition and lead community adviser for the NACN. “Our coalitions have had opportunities to develop expertise that has broadened our initial goal of ‘awareness’ to the extent that our members now use evidence-based methods and are reducing cancer risk.”

From Concept to Completion

Over the last five years, the NACN has completed 1,541 community-based interventions.

How it works: Coalition members work closely with NACN field staff to identify the community’s resources and interests in cancer education, screening and survivorship.

Field staff members and coalition representatives meet regularly with Lengerich and other investigators to carefully design data-driven studies in selected communities or primary care settings. A quarterly meeting of an advisory committee, composed of community members, government representatives, professionals and faculty, serves as another brainstorming venue.

“We then use data, maps and completed pilot studies to roll out and test potentially effective methods to a larger number of communities throughout Pennsylvania and southern New York,” said Lengerich.

For example, Dr. Lynne Brown, co-investigator and professor in Penn State’s College of Agricultural Sciences, is currently testing an intervention to increase consumption of cruciferous, deep orange and dark leafy green vegetables—those associated with lower risk of cancers of the intestinal track—among low-income families. Focus groups in Snyder County had indicated that low-income families rarely eat these protective vegetables and instead focus on only vegetables their family members are familiar with and like—corn, green beans, carrots and potatoes.

“Increasing intake of our target vegetables should help lower the overall population risk of colorectal cancer,” said Brown. Colorectal cancer is the third most common cancer in men and women in the country and the second leading cause of cancer-related deaths in Pennsylvania.

If this initial dietary study is proven effective, a program may emerge that could be used throughout the NACN.

Sometimes studies are conducted with coalition members themselves. For example, the NACN partnered with the Indiana County Cancer Coalition to provide free mammography to patrons of food pantries, because food pantries are likely to serve women who are uninsured and may not be able to afford a mammogram. As a result, the project provided free mammography screening to 138 food pantry patrons in four months, and breast cancer was diagnosed at an early stage in three of these women.

“If it had not been for this initiative with the Indiana food pantries, these women may not have been diagnosed at an early stage, when prognosis is improved,” said Dr. Vernon Chinchilli, chair of Penn State’s Department of Public Health Sciences.

The program, which also involved the Indiana Regional Medical Center, the American Cancer Society, Adagio Health and Penn State Extension, increased mammography screening by 28 percent among underserved women in one year. Another donation from the Tartan Terrors is earmarked toward testing the food pantry model in other communities.

Minding the Gaps

Several success stories can be seen in another recent study, funded by the Lance Armstrong Foundation, to plan local, data-driven initiatives to enhance survivorship for rural colorectal cancer patients.

All NACN coalitions enrolled in the study, along with four rural hospitals. The participants completed a community assessment and then developed a plan to enhance colorectal cancer survivorship. The assessment included a survey of barriers and gaps in services and community resources available to cancer survivors—such as support groups, genetic information and transportation to medical care.

During the assessment, most coalitions and hospitals discovered substantial local gaps in services and resources for survivors.

The coalitions and hospitals responded to these gaps in various ways. Lancaster General Hospital created and filled a new position of patient navigator to assist colorectal cancer patients. The Greene County Cancer Coalition applied for and was awarded external funding to educate local physicians about the role of genetics in detection and treatment of colon cancer. Both the Coalition for People Against Cancer in Clearfield County and the Chautauqua County Partners for Prevention tailored a pharmaceutical company treatment organizer to include local resources to assist cancer survivors. The Wellness Council of the Southern Tier in Steuben County, N.Y., established a standing Cancer Task Force to continue the development of survivorship initiatives.

Paulette Schreiber, a certified registered nurse practitioner who is active in the Elk County Cancer Coalition, which participated in the study, said: “This is one of the many ways that Gene has led the NACN to achieve its goal of reducing cancer-related health disparities in rural Pennsylvania and New York. The positive effects of his leadership, direction, guidance and expertise have always been felt here in Elk County.”

Tartan Terrors with Lengerich Locals Spread the Word
Lengerich accepts a donation from the Canadian-based entertainment group, the Tartan Terrors. The group had heard about the NACN from a relative in Pennsylvania.

Upon Lengerich’s submission of a draft manuscript to the editor of the Journal of Cancer Survivorship, the editor responded: “This paper is exactly what providers and survivors should be informed of, so I would like to expedite the publication of this manuscript. The work is critical to the creation of services for rural cancer survivors.” The article was published last summer.

The NACN also serves as a resource for University students. For example, a student of Dr. Roxanne Parrott, director of Penn State’s Center for Health and Risk Communication, recruited older women from coalitions for a dissertation on the communication factors that would affect the likelihood of rural women to participate in a cancer clinical trial. Medical students have gone to Lengerich to look at reasons why rural cancer patients have not received a complete work-up for their cancer diagnosis and treatment.

Overcoming Wariness

While the community-academic partnership is effective from many angles, it is not without its challenges. “Health care is a business,” said Lengerich. “So network members might feel a little protective.” For example, a new NACN member—a hospital—was wary that Penn State might be seeking cancer patient referrals to its Medical Center.

“There is a certain amount of protection, and that has to be overcome,” explained Lengerich. “A high level of trust is necessary in working with local communities. Our successful history documents the existence of that trust.”