Every year, the advocates gather in a small workroom bright with fluorescent lights, laptops, ideas and hope.
The men and women, each a representative of an underserved community (think Latinos, African Americans, Native Americans, etc.), spend two days learning about the public health research process and huddling with scientific mentors from Fred Hutchinson Cancer Research Center and the University of Washington.
The mentors talk to them about the health needs of their respective communities — asking about everything from vegetable intake to vaccination adherence — then help them craft study proposals that will be reviewed and, with luck, funded with a small research grant.
At the heart of the program is a desire to bond with at-risk communities to better understand and eliminate the issues that prevent them from leading longer, healthier lives. But putting out a welcome mat for people of color, low-income folks and other marginalized groups and chipping away at science’s remote “ivory tower” image is another key goal.
“From our point of view, it’s a way for the Hutch to reach out to build partnerships with communities that have experienced health disparities,” said Kathy Briant, a community health educator with Fred Hutch’s Health Disparities Research Center, or HDRC, which for the last four years has sponsored the innovative training program.
“We see it as one way to make a bridge,” she said.
Public health research has long shown that cancer and other diseases tend to hit minorities and other underserved groups harder, mostly because of socioeconomic challenges, reduced access to care, unhealthy lifestyle choices and other addressable issues.
Fred Hutch’s HDRC group, led by Dr. Beti Thompson, works to pare down those disparities through “embedded” research programs like the longstanding lower Yakima Valley Center for Community Health Promotion. The HDRC grant-training program brings advocates onto the Hutch campus and guides them through a research project designed to even the playing field for these traditional "health have-nots."
“It’s very important to serve the underserved,” said Thompson of the HDRC’s ongoing work. “They are at higher risk for, if not getting cancer, dying from cancer. It’s our goal to try to make life better for them.”
Thompson said too often health studies boil down to “a bunch of white people surveying and studying a bunch of other white people.”
“Our whole goal was to make the center more aware of and more participatory of health disparities,” she said.
Toward that end, the HDRC this year awarded grants to four Pacific Northwest nonprofits, none of which has collaborated with Hutch researchers before. Three groups — the Somali Health Board, Urban Indian Health Institute and Susan G. Komen Puget Sound — each received $7,500 grants to pursue disparities research in the areas of breast cancer and HPV vaccination. A fourth group, El Centro de la Raza, was awarded a $3,500 grant for a community-needs assessment. Funding for the grants comes from Fred Hutch and the National Cancer Institute.
According to Briant, Seattle is home to a growing Somali population estimated at around 20,000 people, many of whom spent years in refugee shelters where they received little or no health care.
As a result, few women in the community know about breast cancer or have even heard of preventive screening. A health fair last November saw 70 people screened for hepatitis C and 28 for cholesterol . But only 12 women were screened for breast cancer.
The HDRC grant will allow Drs. Muna Osman and Ahmed Ali of the Somali Health Board to partner with Thompson to figure out what’s keeping these women from getting screened and come up with educational tools to turn that around.
“I’m guessing one barrier might be language,” Briant said. “And also not having a ‘medical home.’ If they’re not seeing a provider regularly, they may not get that advice, like ‘Hey, you’re at the age when you should get a mammogram.’”
For the study, advocates will interview 20 Somali refugee women to find out exactly what they do and don’t know about breast cancer and screening. Insights gleaned will be used to craft educational materials in the Somali language to enhance breast health and change screening behavior among their peers.
A grant awarded to Komen Puget Sound will explore barriers to breast health in a different community: African-American women, whom studies show have higher mortality rates for breast cancer because they’re more likely to delay follow-up care and treatment.
Komen Puget Sound’s director of programs, Robyn Sneeringer, and others will partner with Hutch public health researcher Dr. Rachel Ceballos to cultivate and facilitate a coalition of South King County and Pierce County community organizations, faith-based groups and health care delivery systems.
“The African-American community faces deep health disparities in the realm of breast health,” said Eli Grossman, a Komen Puget Sound community advocate who attended the grant-training program at Fred Hutch. “Despite having a higher than average rate of mammography — 88 percent of the community has had a mammogram in the past two years compared to the average of 76 percent in our service area — African-American women are still more likely to die from breast cancer at every age.”
Grossman said several barriers have led to the high mortality rate: longer follow-up time for diagnosis and treatment; interpersonal and systemic discrimination; difficulty navigating insurance billing procedures and more.
“Through this grant from Fred Hutch, we will be studying how coalition-building with our partners in Pierce County and south King County affects community empowerment to design a larger intervention to address these breast health disparities,” Grossman said.
One idea: a comprehensive community health worker program to “navigate women to and through the health system.”
Researchers from Komen Puget Sound and the Hutch will collaborate with a number of partners including the Carol Milgard Breast Center, Northwest Leadership Foundation, Leaders in Women’s Health, Ebony Nurses Association and a dozen faith-based organizations including Sisters United, Tabernacle Missionary Baptist Church and Southside Church of Christ.
As with other communities of color, American Indians and Alaska Natives are at greater risk for certain cancers, particularly cervical cancer. In Washington state alone, three times as many American Indian and Alaska Native women are diagnosed with cervical cancer than their white counterparts and twice as many die.
The Urban Indian Health Institute, or UIHI, working with Fred Hutch mentor Dr. Cara McDermott, hopes to lower cervical cancer rates in its people by exploring and eradicating barriers to HPV vaccine use, which prevents cervical and other HPV-associated cancers.
Collaborating with two urban nonprofits, the Seattle Indian Board and the NATIVE Project Spokane, the group will analyze HPV vaccination rates among American Indians and Alaska Natives in both Seattle and Spokane; interview teens/young adults and their parents to better understand why some teens get vaccinated and others don’t; and survey health care providers as to how they present HPV vaccination to these patients.
“We’re hoping to understand the different barriers people face when it comes to getting the vaccine,” said Leah Dodge, a project coordinator/epidemiologist with UIHI and a member of Michigan's Little River Band of Ottawa Indians. “[Is it] the mistrust in [the] health care system, religion, [or] actual physical access to the vaccine? There’s not a lot of research in HPV for this group. We want to understand what it is and [use that] to inform new health programs and educational materials.”
Alyssa Yang, another UIHI epidemiologist working on the project, said she’s very much looking forward to working closely with the American Indian and Alaska Native communities and with the Hutch.
“What makes this project with Fred Hutch so exciting is that we’ll have interaction with the community directly,” she said. “They’re really happy to give input. They feel like their voices are being heard.”
The final study will be a community-needs assessment to accurately depict the health needs of Latinos living in Seattle and South King County. Lauren Kastanas of El Centro de la Raza will lead the study; Fred Hutch’s public health researcher Dr. Linda Ko will act as a mentor. Collaborators will include the University of Washington Latino Center for Health, Movimiento Afrolatino Seattle, Sea Mar Community Health Centers, United Way of King County and others.
The needs assessment will examine various social determinants of health, including housing, employment, financial security, food insecurity, transportation, health and health care, education, security and discrimination. The researchers will interview 20 Latino adults, analyze and summarize their needs, then communicate their findings to various stakeholders in the community as well as policymakers at the local and state level.
“This grant is all about getting a better picture of what’s going on in this community,” said Fred Hutch's Briant. “We have a lot of numbers and data that tell us they have higher rates of obesity, diabetes and cervical cancer, that they’re not getting screened regularly and that their cancers are not being detected at an early stage. But doing interviews and focus groups will give us another layer. It will let us hear from people directly as to their day-to-day needs.”
Briant said she and others from HDRC are excited to work with the four new groups and hopes the grant-training program will continue to grow.
“We wanted to extend our reach and extend the capacity-building beyond the groups we’ve worked with,” she said.
She also reiterated the importance of working directly with marginalized communities to provide solutions that will lead to better care and fewer preventable deaths.
“Working with these advocates is way better than researchers coming in and saying, ‘Hey, I think you have this problem,’” she said. “They know what the needs are and are working to address those needs. That’s how you make a real dent in health disparities.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at firstname.lastname@example.org.