How do you create a pathway to health equity? What are the actual steps?
Some of the many discussed at the Pathways to Equity Symposium, held May 1 at Fred Hutchinson Cancer Center, included:
“We want to develop the next standard of care. That’s why clinical research is critically important,” said Fred Hutch medical oncologist Evan Yu, MD, during a discussion on health equity in cancer clinical trials. “But if you’re not even getting the standard of care, how can you think about the next level? If you’re not getting enough to eat, how can you focus on a healthy diet or being in a clinical trial?”
The daylong discussion on the haves and have-nots of equitable health care, both heartbreaking and heartening, was sponsored by the Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium. Each year, its Office of Community Outreach & Engagement, or OCOE, brings together researchers, community champions, patient advocates and other stakeholders to hash out the best practices to achieve true health equity.
This year’s theme, Amplifying Health Equity Through Empowered Communities Across Washington State, reflected both the boisterous nature of the discussion and the Cancer Consortium’s recent growth spurt. Last year, its catchment area expanded from 13 Puget Sound counties to all of Washington state, including 39 counties, 7.7 million people and many more communities in need of cancer and disease prevention, screening and treatment.
Though the catchment area has grown, OCOE director Jay Mendoza, MD, said the trends in cancer incidence and mortality in Washington state haven’t changed in five years. Most cancer patients in the state are diagnosed with breast, prostate, lung, hematologic or colorectal cancer, with lung cancer claiming the most lives.
And marginalized communities continue to suffer the most.
“Indigenous populations have the highest overall cancer incidence and African Americans have the highest cancer mortality rates in the state,” Mendoza said, naming both as the Cancer Consortium’s “priority populations.”
Project manager Craig Dee and Selisha “Snowy” Johnson, community health educator for Indigenous populations, reported on OCOE’s Indigenous Cancer Health Equity Initiative, launched last year to tackle the high cancer rates among American Indians and Alaska Natives.
“Washington state has 29 recognized tribes, each with its own language, leadership and ceremonies,” Johnson said. “A one-size-fits-all approach doesn’t work with tribal communities.”
Unfortunately, each tribe also has its own health issues and barriers to care. Dee and Johnson are currently creating a framework for working with tribal communities and trying to learn more about the Indian Health Service's role in health outcomes.
“It’s imperative that the Cancer Consortium continue to support American Indian and Alaska Native populations,” Dee said. “Indian Health Service doesn’t even have oncology programs.”
Mendoza said OCOE’s education and prevention efforts will continue to focus on breast, prostate, lung, hematologic and colorectal cancers, along with leukemia in young children and ovarian cancer in people over 65, all identified as priority cancers by the Consortium and its community partners.
“We hope the Consortium can make a big impact on these priorities,” he said.
Washingtonians who live in rural counties are at higher risk for cancer due to higher rates of obesity and smoking, according to Jay Mendoza, MD, director of the Fred Hutch Office of Community Outreach & Engagement.
Unfortunately, rural counties — and low-income households — also have the lowest prevalence of cancer screening. Preventive cancer screening helps to catch the disease before it becomes more difficult to treat.
Other progress included the hiring of two community health educators for the newly opened Spokane satellite office, which has already formed a Community Action Network of Eastern Washington, or CANEW, bringing the number of Fred Hutch-sponsored community action coalitions in the state to three. OCOE is also in the process of purchasing a third giant inflatable colon, destined for Spokane.
OCOE distributed $125,000 in community grants to nine different organizations across the state including Cancer Lifeline, Cancer Pathways, Marvin Williams Recreation Center, Mission Africa, NE Tri County Health District, Peninsula Community Health Services, Spectrum Center, Tough as Nails and the YMCA.
And the group’s community health educators participated in a raft of outreach efforts including health fairs, mobile cancer screenings, podcasts, email newsletters and listening sessions.
“Community health education takes a lot of time, a lot of presence and a lot of relationship-building,” said community health education program manager Liz Nelson. “You’ll find the CHEs at community meetings, on task forces, supporting partner events and yes, even hauling giant inflatable colons all over the state.”
The OCOE also announced several new reports, including a forthcoming Indigenous Cancer Health Equity framework, an Office of Patient Engagement needs assessment slated for June and the Conversations Across Washington report, available here.
— Keynote speaker Dr. Reggie Tucker-Seeley, vice president of health equity at ZERO Prostate Cancer
Both the keynote address and key questions came from Reggie Tucker-Seeley, ScD, vice president of health equity at ZERO Prostate Cancer, who spoke about how to develop and implement a health-equity strategy.
He also shared his personal motivation for getting involved in this work.
“I noticed that whenever I would wear my Harvard gear to a healthcare appointment, people looked at me differently; they saw me as a person,” he said. “That made me think about what we have to wrap ourselves in to be seen. We could give a Harvard T-shirt to every Black man navigating the healthcare delivery system, but we shouldn’t have to do that.”
Instead, Tucker-Seeley emphasized principles that ensure equity in clinical care and research:
It’s also crucial, he said, to know if your organization is even ready to tackle health equity work.
“Health equity isn’t as easy as checking box one, checking box two, and you’re done,” he said. “Leadership has to be committed and engaged, and you need ongoing training and education. You also need to look at the demographics of your staff. How do you increase the diversity within your own organization?”
Tucker-Seeley also spoke of the importance of digging deep to get to the heart of issues.
“At ZERO Prostate Cancer, we’re not just going to say to Black men, ‘Get screened,’” he said. “We talk about removing obstacles to care.”
Those obstacles can be considerable, as illustrated by a fireside chat on diversity in research.
Yu, a Fred Hutch urological medical oncologist and the medical director of the Cancer Consortium’s Clinical Research Support, spoke fervently about the hurdles patients face.
“One of the most obvious barriers is transportation,” he said. “But it’s also about childcare. It’s about paying for parking and taking days off work. Some people face major challenges, and we need to do better to alleviate them.”
Tucker-Seeley emphasized the need for researchers to put themselves into others’ shoes, especially when designing trial protocols and inclusion/exclusion criteria.
“I come from a low socioeconomic status family, and I’ve seen the decisions poverty induces,” he said. “Decisions like ‘Do I feed my children or go to this clinical appointment?’ You want the people around the table to understand the choices and sacrifices patients are making. Many protocols are just cut and pasted from previous clinical trials. Don’t do that. Instead, think about what it takes for patients to participate.”
Clinical trials, Yu said, can actually be a luxury for some.
“We’re fooling ourselves if we don’t recognize that,” he said. “You have to have the transportation, take the time off work, you have to have a doctor that has a clinical trial accessible to you. I think we have to stop trying to get more patients on clinical trials and start making sure they have food security.”
Many of the equity issues in health care do require systemic change, the experts acknowledged.
“No clinician assumes they’re providing inequitable care, but it’s happening and it’s a system-level problem,” Tucker-Seeley said. “Our healthcare delivery system sits within this country and its history of treatment of marginalized people. We can’t wave a wand and make the historical marginalization completely disappear.”
Creating more community engagement and DEI (Diversity, Equity & Inclusion) initiatives within the healthcare system can help amplify and elevate the conversation, he said, leading to necessary training. And change.
Navigators guide patients through “a fragmented health care system,” Henderson said, connecting them to all manner of needed resources, from gas cards to fill their tank to spiritual support to fill their soul.
“Housing is a major challenge,” said Fred Hutch patient navigator Jennifer Deas, who focuses on breast cancer patients. “Also, getting time off work. We’ve very creative in layering the resources available to keep families afloat as long as we can. I wish there were more available.”
In addition to shortages brought on by the pandemic — and the stress of a cancer diagnosis — many patients from marginalized communities face a lack of social support and loneliness; imbalances of power; lack of cultural competency; lack of trust; a lack of understanding in some providers of the historical and structural causes in inequities and worries about their safety.
Patient navigators support and connect them with the services they need.
“We focus on empowering our patients to have more agency in their care,” said navigator Anthony Nget, who serves Asian American and Pacific Islander populations. “We encourage patients to identify their needs and work collaboratively to address them. And there can be a large cultural component to it. Many folks, like immigrants, feel overwhelmed. We try to be cultural brokers and go-betweens.”
Resources remain scarce, however, and funding for the program is far from sustainable.
“I would love to see policy give reimbursement for patient navigation instead of piecemealing the funding together from donations and grants,” Henderson said.
Fred Hutch’s patient navigation program has grown substantially since its launch three years ago, expanding from just under three people to a team of ten. And though it can be difficult work, members said it’s also rewarding.
“We help patients get through treatment and see the light at the end of the tunnel,” Deas said. “That is rewarding and rebuilding for me.”
A final session on “Translating Center Research to Policy to Achieve Health Equity,” moderated by Jude Ahmed of the Urban League of Metropolitan Seattle, featured Jeff Ketchel, executive director of the Washington State Public Health Association; cancer patient advocate Anita Mitchell Isler and Katie Treend, Comprehensive Cancer Control Program Coordinator with the Washington State Department of Health.
Isler, who founded the nonprofit Washington Colon Cancer STARS, spoke about her efforts to lower the colorectal cancer screening age in order to reflect (and protect) the increasing number of people under 50 being diagnosed with the disease.
“Patients can lend their voice to help pass legislation,” she said. “We can share our stories. And patient advocates should be involved in research from the very beginning. You need opinions from the people who will be on the trials.”
Treend announced the relaunch of the Washington State Cancer Coalition which is currently working on a five-year cancer plan that prioritizes clinical trial diversity. She also emphasized the importance of making patients feel safe at each health care touchpoint.
“Just having a safe space to seek care is critical,” she said, highlighting the massive disparities faced by groups such as members of the LGBTQ+ community who are often left out of scientific data and conversations. “And there are a lot of touchpoints — the person at the front desk, the person placing them in an exam room. How do we create entire systems and organizations where it’s safe to get screened and get care? When you think of changing incidence rates and mortality rates, those are big, large moves that will take smaller equity moves.”
All the experts pushed for changes that would be sustainable “when the people in this room are long gone.”
“If you have communities building these together, you have a better shot at making sure those things will continue on,” Treend said. “That’s the goal of health equity. Not just to have changes implemented for one grant or one legislative cycle — you want to see them continually over time.”
Ahmed ended the day by reminding all that though there is still much to do, it’s important to see the progress and to keep pulling together.
“The more we elevate the success stories and the wins and attribute them to the people that did fight for them, the better,” she said. “You don’t have to be an expert to advocate for change, you don’t have to be an expert to participate in research. Research can mean a lot of things, sharing patient stories, sharing community experiences. It can be pulling all of the different specialties and lived experience and expertise together to advocate for a wider change.”
The OCOE also celebrated its successes, including honoring three health equity champions for their compassionate and tireless work addressing health disparities in Washington state.
Fred Hutch professor emeritus Beti Thompson, PhD, founder of Fred Hutch’s Health Disparities Research Center, presented the Beti Thompson Cancer Health Equity Researcher Award to Allison Cole, MD, MS, who serves as a UW physician in the department of family medicine at Harborview Medical Center and conducts research focused on improving health outcomes in rural communities.
“I love partnering with communities,” she said. “My role is learning from the communities I work with and helping them amplify the work they’re doing.”
Jeff Ketchel, executive director of the Washington State Public Health Association, received the Beti Thompson Community Health Champion Award for his dedication to public service and community health.
“I’m so honored to be included in this wonderful pantheon of awardees,” he said. “In public health you need to take risks if you’re going to be successful. At WSPHA, we’ve declared racism a public health crisis. Public health as a system and as an entity needs to step up in order to counter some of the things that have been talked about today regarding racism in institutional systems.”
Finally, Fred Hutch staff scientist Stephaun Wallace, PhD, MS, was presented with a new award, the Beti Thompson Health Equity Staff Champion Award, for his nationally impactful work to educate and engage diverse groups regarding the new COVID-19 vaccine, helping to increase diversity in the vaccine’s clinical trials and creating trust in its efficacy.
“He lives and breathes community engagement,” Thompson said as she introduced Wallace, who also serves as the director of external relations for Fred Hutch’s HIV Vaccine Trials Network, or HVTN.
“There are so many communities impacted by health inequalities and I hope you’ll all be continuing that work,” he said in accepting. “Because if it’s not COVID-19, it’s going to be something else — cancer, diabetes, hypertension or the many structural issues impacting these communities. On behalf of them, thank you. The work continues.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer 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 email@example.com. Just diagnosed and need information and resources? Visit our Patient Care page.
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