The school-based Fit 5 Kids screen-time reduction trial was almost done. They just needed to do one more in-person talk to cap a months-long program designed to lure Latino preschoolers away from smartphones and TVs and toward better health. Then COVID-19 hit.
“We definitely saw the irony of sending out a video to help parents manage their preschoolers’ screen time,” said Dr. Jay Mendoza, the project’s lead scientist. “But we needed to follow the schools’ lead. What do you do?”
In a word: pivot.
That’s what scientists at Fred Hutchinson Cancer Research Center have been doing since the start of a tumultuous 2020, when the country’s first-known COVID-19 outbreak popped up first in Seattle’s backyard.
Hutch virologists, clinical researchers, and infectious disease experts tracked the virus’s spread, started to seek new treatments and launched vaccine trials. Population scientists sprang into action, too, using their expertise to predict the disease’s path, amplify prevention efforts against both COVID-19 and cancer (with screenings on pause, it continues unabated), and shine a light on the link between structural racism and lack of access to health care.
Read on for a few snapshots of how Hutch public health researchers have re-envisioned, redirected and virtually reinvented their science to respond to this brand-new virus that’s not only killed a million people worldwide but exacerbated age-old problems of health disparities, misinformation and medical mistrust.
We’ll update this page with stories about more scientists throughout the week of Sept. 14th.
“Outreach and education doesn’t stop. It may look different, but it doesn’t stop.”
That’s how Dante Morehead, a community health educator, characterized his team’s response to the coronavirus pandemic.
Morehead is one of four community health educators with the Fred Hutch / UW Cancer Consortium’s Office of Community Outreach & Engagement, or OCOE.
He and fellow educators Liszet Bigelow, Craig Dee and Dillon van Rensburg regularly travel around Washington state sharing information and resources to help underserved communities better understand the basics of cancer and disease prevention. They attend health fairs; speak to church groups and at wellness festivals; they cart a gigantic inflatable colon around the state to help people understand how colorectal cancer starts, its link to diet and how important it is to get screened.
Then came COVID-19.
“We switched from traveling back and forth across the state to everything being virtual and delivered in an environment of uncertainty and inconsistency and health risks,” Morehead said.
COVID-19’s restrictions stalled studies and put numerous projects on a temporary hold throughout the Hutch’s Public Health Sciences Division. But the pandemic also meant the team’s prevention messages were even more vital to get out to people.
So, they got creative.
Soon after going remote in March, they started curating and writing a weekly e-newsletter (sign up for it here) and developed a podcast series, Cancer Health Equity NOW, launching in October with Morehead as the host. Dillon van Rensburg started production on a video series, Community Conversations for Cancer Health Equity, which you can catch on Fred Hutch's YouTube channel.
OCOE has also upped its social media efforts in a big way.
The team now does Twitter “chats,” virtual symposiums and Facebook Live videos on prostate cancer prevention, maternal health and more. Instead of coordinating and hosting an annual health & wellness event at the Rainier Beach Community Center, the team transitioned the festival into an online social media campaign on the OCOE social media pages, where OCOE provided daily exhibitor highlights through September.
Craig Dee, who collaborates with tribal communities, partnered with University of Washington’s Seven Directions, School of Social Work, School of Public Health and the Indigenous Wellness Research Institute on a personal protection equipment, or PPE, drive to benefit tribal and urban Indian health care facilities and programs.
“Rates of COVID-19 for American Indian and Alaska Native communities are 3.5 times higher than they are for non-Hispanic whites,” Dee said. “Why? Historical trauma and persistent racial inequity are likely factors that contribute to COVID-19’s higher incidence among these populations.”
But it’s also things like having to use public transportation, having limited access to running water and household size, Dee said.
“All of these things and much more play a role in contributing to a higher incidence,” he said. “This is why we’re doing the PPE drive. We want to support our Indigenous relatives. Adequate supply of masks, hand sanitizer and other equipment are vital for tribal communities to provide essential health care services. Without proper supply of PPE during this pandemic, these essential services stop, furthering the strains of health disparities within communities.”
Liszet Bigelow works with a wide mix of urban underserved populations including the Somali community, the refugee community, the Asian and Pacific Island community, the LGBTQ community and others.
Establishing trust with these groups is crucial, she said. But doing that in the midst of a pandemic is particularly challenging.
“There are definitely attitudes of mistrust towards science and research,” she said. “The Hutch is seen as a really awesome institution, but it also has an elevated, almost lofty, perception and that can be intimidating, especially for people with limited resources. We’re also a research entity and research hasn’t had the best outreach history.”
Black, Latino, Indigenous and other underserved communities need accurate public health information to help change the fact that many are hit disproportionately hard by COVID-19 — and by cancer.
“This pandemic has really highlighted the constant disparity of who gets tested or who gets taken seriously for their symptoms,” she said. “It has also shown us an attitude that ‘The job is essential, but you’re not.’”
Bigelow recently partnered with El Centro de la Raza, the Center for People of All Races, to provide key public health messages to their communities.
“They needed basic information on who‘s at risk and what to do if you have symptoms or are diagnosed,” she said. “I put together some simple language-appropriate tool kits with information about those at risk, like multigenerational families in one home; when to stay home with symptoms; when to rush to the ER.”
The team is also very mindful of the other pandemic – that of racism and racial injustice — targeting the populations they serve. COVID-19 and the Black Lives Matter movement shone a klieg-light on both.
“Dealing with COVID and racism at the same time was like a double whammy,” Morehead said. “When we reached out to our organizations, they were in survival mode.”
Typically, these community-based organizations would be organizing the health fairs and educational events the educators attend. These days, the OCOE is collaborating with them on grant projects, social media posts and the creation of posters and infographics.
“We’re doing whatever we can to be supportive and provide resources during this challenging time,” Morehead said.
And while it has not been easy to virtually reinvent themselves, the team has adapted and used this moment to scale up their efforts.
“This office has given us all a voice that allows us to talk about health equity through a social justice lens,” Morehead said. “That’s huge. And now that we’re virtual, we’re able to reach a lot more people. To me, that’s good science.”
When COVID-19 led to research delays, health services researcher and gastroenterologist Dr. Rachel Issaka pivoted to writing to inform health policy.
“I started thinking about how the pandemic could undo progress in the management of chronic diseases,” she said.
A colon cancer researcher, she addressed the pandemic’s looming collateral health damage from lack of preventive screening and other health care in a Scientific American post, encouraged the resumption of safe screening in the Journal of the American Medical Association, and created a PSA to raise awareness about high mortality rates of colorectal cancer in African Americans.
“Our COVID-19 response is not complete without identifying and, to the extent possible, mitigating the unintended consequences these strategies will have on public health,” she wrote regarding the federal delay of nonurgent care like cancer screenings. “In the midst of a pandemic, we cannot and should not abandon chronic disease management or disease prevention.”
That commentary led to further invitations for her to contribute to national guidance on safely resuming colorectal cancer screening during COVID-19.
Issaka’s research also investigates and proposes mitigation to health disparities. As the Black Lives Matter movement sparked conversations about structural racism, she began to engage in national conversations about barriers to care, especially the ones African Americans still face each day.
“George Floyd tested positive for COVID-19 but he did not die from COVID-19,” she said. “This highlights, for me, the difficulties and challenges Black people in this country face. You can survive a disease that’s devastating our nation and yet be killed at the hands of a police officer.”
Issaka penned an editorial for JAMA on how racism manifests in medicine and the necessity for medical professionals to name it and help dismantle it through local practices and policy change.
“Recent events prompted me to write about looking inward to see how our own practices and policies in medicine contribute to structural racism and to propose solutions as to how we fix it,” she said.
Whether in colon cancer, COVID-19 or other diseases, it’s not genetic differences that lead to such poor health outcomes in African American, Latino and Indigenous people, Issaka said.
It’s structural racism.
“We talk about the end outcomes of disease. We talk about cancer, diabetes and hypertension,” she said. “But we don’t talk about the poor living environments that lead to cancer. And the fact that those poor living environments are due to policies that restricted individuals of specific races to areas that would not have good access to clean air, clean water, good food or places to exercise.”
Racist policies and racist structures have led to Black people being disadvantaged, Issaka said.
“Systematic disadvantage of Black people leads to poor health outcomes,” she said. “Once we think about it in that context, we can interrogate the policies and practices that have to change.”
Scientists who work in labs don’t always get out in the field to meet the people who participate in their studies and clinical trials. Just as public health researchers don’t often engage in molecular biology.
“COVID’s not our area of expertise, but the scientists working on it want to work with communities we’re working with, so we’re trying to help,” said Kathy Briant, program administrator for the Fred Hutch/University of Washington Cancer Consortium’s Office of Community Outreach & Engagement.
An outgrowth of Hutch’s longstanding Health Disparities Research program, the OCOE collaborates with Washington state community-based organizations like the Somali Health Board, the Urban Indian Health Institute, Sea Mar Community Health Centers and Gay City, along with community health programs, churches and tribal groups. It also runs the Center for Community Health Promotion in rural Sunnyside, Washington.
OCOE director Dr. Jay Mendoza calls these organizations “the ones in the trenches day in and day out.”
With COVID-19 hitting Black, Latino and Indigenous communities harder, it’s imperative these populations be represented in clinical trials for vaccines and therapies. But these same communities are rightfully skeptical of health care and health research given their long history of medical mistreatment, structural racism and historical trauma.
Bench scientists, likewise, may not always be up to speed on the challenges of participating in a clinical trial requiring regular blood draws or clinic visits as, say, a low-income parent with three kids, two jobs and no car.
After a raft of COVID-19 investigators at the Hutch and elsewhere contacted the OCOE with “remarkably similar asks” about how to connect with communities of color, the public health researchers consolidated the requests and scheduled a series of meetups between scientists and the community coalitions it has built.
In other words, they hooked up the people at the benches with the people working in the trenches.
“We’ve been trying to do clinical trial education for so long,” Briant said. “But you need to go out to the community to provide this information. You can’t expect that people are going to come knocking on your door. You need to explain what they are. You need to build trust.”
Briant said the community experts they tapped were “very forthcoming” with advice for the researchers.
Via Zoom sessions, conference calls and roundtables, representatives from around Washington state shared frank advice with researchers from Hutch’s CovidWatch study, the Greater Seattle Coronavirus Assessment Network Study, the national COVID-19 Prevention Network studies and others on the best ways to recruit and retain research participants from lower-income and underserved populations.
“They got an earful,” said Mendoza.
OCOE’s community partners provided detailed feedback on how to tailor protocols to “make them more equitable and palatable,” Mendoza said. They also pointed to the need for fair compensation for participation, as well as “reimbursement for transportation, missed work, childcare and meals.”
“These things are important, especially in a time when people are experiencing food insecurity, getting furloughed and laid off,” Briant said.
But these are things that can be forgotten in the flurry of writing a research protocol mid-pandemic. Also forgotten or simply not understood, the historical trauma suffered by the very groups the scientists are trying to engage.
Briant said their experts reminded the researchers that “Tuskegee is still a thing.”
“Our staff and our community partners gave them a lot of food for thought and some of the investigators acknowledged they hadn’t thought about some of this stuff before,” she said. “They said they needed to process and figure out where to make the recommended changes.”
Mendoza said designing studies with equity in mind is crucial, otherwise “most new and exciting health breakthroughs will probably widen disparities given existing structural inequities in healthcare and society at large.”
For Briant, it was an incredible teaching moment — for all.
“The Black Lives Matter movement and the inequities we are seeing with COVID in communities of color is making people aware of the need to shift their thinking to be more inclusive, which is good,” she said. “It’s critical that people know that the status quo is not okay anymore. Even in science.”
Hutch biostatistician Dr. Ruth Etzioni and her team create mathematical models for the American Cancer Society and other expert panels to inform national guidelines and policy regarding whether and how often to screen for cancer.
When the pandemic hit, she began to put her modeling chops to work on outmaneuvering COVID-19.
“I am now knee-deep in COVID-19 policy work at the Washington state level,” she said. “It started when I began looking closely at the different models to understand why their predictions were all over the place.”
Etzioni, who holds the Rosalie and Harold Rea Brown Endowed Chair, uses models to evaluate breast, prostate and other cancer screenings. With them, she's able to calculate the benefits of finding a cancer versus the potential harms of false positives and/or overtreatment. She uses models to inform an appropriate public-health response in cancer and now, in the novel coronavirus. But she's also very cognizant of their limitations.
“All models simplify reality, make assumptions and require reliable data,” she wrote in an editorial aimed at educating the public about why COVID-19 disease models had such wildly different predictions about potential death tolls. “But different models depend on different input data streams … and we need to recognize what [models] can and cannot do. Knowing what goes into each model is the first step.”
The biostatistician said she’s spent a lot of time “ sifting through technical appendixes to learn about how models work.”
“In a way, I feel like I’ve become a model whisperer,” she said.
She’s currently working with the Washington state Department of Health’s modeling working group, gathering and interpreting data and models from Bellevue-based Institute for Disease Modeling, or IDM, the University of Washington’s Institute for Heath Metrics and Evaluation and other local and national modeling groups so state health officials can better predict, track and prevent COVID-19.
She helps author the state Department of Health’s weekly situation report — “it’s essentially what’s happening in the state, the latest numbers and insights,” she explained. And with infectious disease experts and modelers from the Hutch, biostatisticians at UW and Microsoft’s AI for Good Research Lab, she’s anticipating policy questions that might arise as the epidemic evolves and thinking about how to answer them.
“It’s very gratifying to be able to use clear statistical thinking to help the state navigate this landscape,” she said. “The problem is the questions and needs and issues move fast, and with modeling, it takes a couple of weeks to answer a question. So, you have to anticipate the questions. It’s almost like mind-reading.”
Etzioni said the work has been both “interesting and exciting,” especially when she sees prevention measures start to move the infection numbers down.
“It was a pretty dire situation in June and July, with rates going up in an exponential way,” she said. “It was very worrying. The IDM models showed very clearly how bad things were likely to get if nothing was done to slow to spread.”
IDM presented the models to COVID-19 policymakers, though, and things have now turned around.
Fred Hutch biostatistician Dr. Ruth Etzioni
“Gov. Inslee paused the ‘Safe Start’ phase, closing indoor bar service and mandating masks,” she said. “And now things have been looking better, with the exception obviously of outbreaks like the one in Pullman, in Eastern Washington.”
Etzioni said the IDM modelers were also able to show how many more cases might have been diagnosed if the state hadn’t paused the Safe Start program and tightened its restrictions in late June.
“It was fantastic because it showed that if nothing had changed, the number of cases by the end of July would have been double what it actually was,” she said. “This can help justify health policies that are necessary but not popular. It’s a way of using models to generate evidence ... and we all know that the best policies are evidence-based.”
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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