Photo by Lindsey Wasson for Fred Hutch News Service
The statistics can be daunting. Black men are roughly twice as likely to die of their prostate cancers and black women are 35 percent more likely to die from their breast cancers than both of their white counterparts, according to the National Cancer Institute. Cancer death rates for American Indians and Alaska Natives increased from 1990 to 2009 while mortality rates for whites trended down over the same time period. Hispanic and Latino Americans make up 8.5 percent of enrollees in clinical trials even though they make up 14.5 percent of the population.
How do researchers, doctors and health care workers bridge these formidable gaps in health equity? Nearly 100 people gathered at Fred Hutchinson Cancer Research Center Friday to hash out the answers at the 2018 Pathways to Equity Symposium.
One that came up again and again — from representatives of community groups like the Somali Health Board to keynote speaker Dr. Marvella Ford, associate director of Population Sciences and Cancer Disparities at Hollings Cancer Center at the Medical University of South Carolina: It’s all about building trust and relationships.
Photo by Lindsey Wasson for Fred Hutch News Service
Research meets ‘real world problems’
Dr. Jay Mendoza, newly-minted Health Disparities Research Center director and associate director for Minority Health and Health Disparities for the Fred Hutch/University of Washington Cancer Consortium, kicked off the day’s discussion by sharing statistics on health disparities within the 13-county region surrounding Fred Hutch and its partners.
High priority underserved populations in this area are Native Americans, African-Americans and people who live in rural areas, he said, due in part to the high smoking rates, the high obesity rates, poor access to cancer care, poverty and the low cancer screening rates for these populations. All of those factors are associated with a higher risk of cancer and other diseases.
“We hope to marshal the troops and serve all residents within our catchment area,” he said. “And we have a strategic plan to address these inequities in a number of ways, including better patient navigation, an increase in community health educators and greater cancer screening outreach.”
Keynote speaker Ford reiterated the need for community outreach, understanding and trust building, particularly in recruiting participants for research studies.
“These people face ‘real world problems,’” she said, referring to issues like food and housing insecurities or lack of transportation. “You have to go out into the communities and do outreach. You have to address their problems and barriers to participation.”
Recruitment techniques used by Ford and her colleagues include relationship-building, patient navigators, resource guides (think childcare and transportation options), and partner involvement, particularly wives and partners of African-American men. She also stressed the importance of not excluding people with certain medical conditions from trials, citing her own research that’s shown people with additional health issues are not less likely to participate in research.
“If you exclude people with hypertension or diabetes or other comorbidities, we are excluding many African-Americans from participating in clinical trials,” she said.
Sensitivities to language and backstories
A panel of representatives from three community groups — the Somali Health Board, Komen Puget Sound and the Urban Indian Health Institute — shared challenges they’ve come up against while trying to serve different populations.
Muna Osman of the Somali Health Board, for instance, said she initially thought the Somali women she served could read the materials they’d created in their native language, Somali. But the women had never been to school.
“Many of these people have been in camps all their lives,” she said. “They don’t read but they do use Snapchat and WhatsApp and conference call lines to communicate. That’s how they socialize. We need to cater our education and outreach to their needs.”
Dr. J. Carey Jackson, a Fred Hutch–affiliated public health researcher, professor of medicine and adjunct professor of global health at the University of Washington, and the medical director of the International Medicine Clinic, Refugee and Immigrant Health Promotion Program at Harborview, stressed the importance of researchers and health workers being attuned to the background of refugees, many of whom have experienced torture, rape and other violence.
“I’ve never had one of these, but this contraption looks horrible,” he said, pointing to a slide of a mammography machine. He then went on to relay the story of an older Ethiopian woman who became frightened during her breast health screening and disappeared from their system. He learned later she’d been brutalized in her country before coming to the U.S.
“We need to be sensitive about how our health care system can seem to someone from another country,” he said.
Health equity trailblazers
In addition to providing an overview of what the Fred Hutch/UW Cancer Consortium is doing to encourage STEM careers in underrepresented groups, the symposium ended with the presentation of two awards, both named for Dr. Beti Thompson, who has been leading health equity research at the Hutch for decades.
Breast cancer patient and advocate Bridgette Hempstead, founder of the African-American cancer support group Cierra Sisters, received the Beti Thompson Community Trailblazer Award and was lauded as a “treasured partner” in the Hutch’s health disparities research.
“Bridgette has had an extraordinary impact on the health and well-being of her community,” said HDRC Program Administrator Kathy Briant. “She truly is a community health trailblazer.”
Fred Hutch public health researcher Dr. Rachel Ceballos received the Beti Thompson Health Equity Researcher Award for her ability to build trust with underserved communities.
“Rachel Ceballos epitomizes a community-based researcher,” said Thompson, presenting the award that bears her name. “She listens to communities and forges strong partnerships where everyone knows they are an important part of the research process.”
Mendoza said he was thrilled at the huge turnout and looks forward to incorporating the many ideas and suggestions presented at the event.
“It’s not common to be able to get everybody in the same room and brainstorm,” he said. “It’s great to know where the gaps and opportunities are.”
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.
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