Health equity experts from Fred Hutch Cancer Center and beyond shared practical tips for creating lasting partnerships between community members and the scientists striving to improve their health at the annual Pathways to Equity Symposium, held June 6 on the Fred Hutch campus.
The event, sponsored by the Office of Community Outreach & Engagement, part of the Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium, provided brief updates on the OCOE’s health equity efforts in Washington state. Panel participants and guest speakers also took deep dives into the art and science of clinical trial design, recruitment and retention, and how researchers can successfully engage with members of the community. There was even time leftover to honor a trio of health equity trailblazers.
The OCOE team, led by Jay Mendoza, MD, MPH, shared news, as well.
Public health researcher Vida Henderson, PhD, PharmD, was recently named OCOE’s first deputy associate director. Ten community organizations were just awarded a total of $142,000 in OCOE grants (story coming soon!). And Fred Hutch just hired two Indigenous faculty members: cancer prevention researcher Lonnie Nelson, PhD, a descendant of the Eastern Band of Cherokee Indians, and epidemiologist Dornell Pete, PhD, (Diné) from the Navajo Nation.
This important search, co-led by Mendoza and Chris Li, MD, PhD, resulted in the first Indigenous faculty members to join Fred Hutch. Li is the associate director of diversity, equity and inclusion for the Cancer Consortium and holds the Helen G. Edson Endowed Chair for Breast Cancer Research.
OCOE’s program administrator for research operations Elizabeth Carosso gave an update on the Recruitment and Retention Shared Resource, created to help guide Cancer Consortium researchers toward more equitable trial design and outreach.
“We know that when research studies include diverse participants, the results are more likely to be generalizable and applicable to the real world, which results in better outcomes for everyone,” she said. ”When we first started this in 2020, we had nine requests from investigators. In 2023, we had 40 requests. Today, we’re close to 120 requests from all of our Consortium programs. That’s a big deal.”
Carosso also announced the launch of a new clinical trial, GUIDE (Guiding participation toward Understanding, Inclusion, Diversity and Equity for cancer clinical trials), made possible by recent funding from the Andy Hill CARE Fund.
“The goal of this two-year grant is to develop and pilot a program to address health-related social needs and the added financial burden of participation in clinical trials,” she said, adding that the program will include a clinical trial navigator as well as selected funds to reimburse patients for clinical trial related expenses.
“If they can access existing resources through patient financial services, they’ll get those funds first,” said OCOE’s assistant director Kathy Briant, MPH. “If not, they’ll be able to tap into some available funds. Hopefully, the pilot will show that this program better supports patients interested in participating in clinical trials and it can become part of the Cancer Consortium’s infrastructure.”
A panel discussion entitled “I Trust the Science, But Not the System” featured two investigators with a pair of participants who volunteered for their studies. Study volunteers talked about why they joined the trials, what they learned and what worked and didn’t work for them. Investigators discussed their process for designing trial protocols and how important patients were to the process — not just as participants, but as partners in trial design.
“We try as much as possible to involve prior patients in our trial design,” said Fred Hutch’s Mohamed Sorror, MD, MSc, who researches and treats blood cancers. “That’s where you get most of the information you’re lacking. I was amazed by the knowledge that came out of a recent meeting with patients regarding a new trial. We realized there were a lot of changes that would improve it and we wouldn’t have known if we hadn’t taken that step.”
Behavioral health researcher Jonathan Bricker, PhD, who is currently conducting a telemedicine weight loss trial, emphasized how important it is for researchers to willingly connect with community.
“It all starts with the PI [principal investigator],” he said. “You have to want to engage and build a community advisory board and not all researchers do. You have to look at your values and what you’re trying to learn. [Equity] shouldn’t just be a line in your proposal to get a grant.”
Panel participant Analisa Marotta of Seattle was initially diagnosed with the rare soft tissue cancer Ewing sarcoma, then developed therapy-related acute myeloid leukemia. With her second cancer diagnosis, she opted for a clinical trial.
“I was eager to participate,” she said. “We’ve made great strides in treatment because of scientific research. It was important to me to participate and give back, especially because I figured there weren’t a lot of people like me with this ‘weird cancer.’ I was also thinking about my daughter’s future.”
Participants went on to discuss pain points such as miscommunication, scheduling hitches and feeling overwhelmed by numerous appointments and check-ins. PIs reflected on their motivation for pursuing equity in cancer care and research.
“I’ve had to deal with anti-Semitism throughout my life — both direct and indirect,” Bricker said. “That’s helped me appreciate what it’s like to be different. In your pain and suffering, you find your values.”
A Q&A after the panel prompted a spirited discussion about the importance of sharing results.
“My daughter was a cancer patient and participated in a clinical trial when she was five,” one audience member said. “It’s been years and my daughter is still here, but I’ve not heard from anybody about the trial. I don’t even know where to go to find out what happened. Has anything improved?“
Another audience member, Evelyn Reingold, shared that she was a member of the Cancer Consortium’s Institutional Review Board, or IRB.
“I’ve been on the IRB for 20 years,” Reingold said. “Studies can’t start or continue unless they’re approved by the IRB. Frequently, studies are sent back because the wording is too academic or it gives a sense that the patient will be cured which is misleading. I’ve seen prostate studies where only two Black men were recruited — that makes absolutely no sense.”
IRBs, she said, are sending more and more studies back to the PIs for not being inclusive enough.
“Sometimes you have to do what’s best for the whole community,” she said.
— Fred Hutch public health researcher Dr. Vida Henderson
Keynote speakers Tabia Henry Akintobi, PhD, MPH, and LaShawn Hoffman, both of Morehouse School of Medicine in Atlanta, talked about their longstanding efforts to build their Community Coalition Board to guide public health and prevention research, breaking down the art and science of the “deep and important work of community-based participatory research.”
“‘Otherness’ has always been a big part of my identity,” said Akintobi, elaborating on the “why” of her work as chair of Community Health and Preventive Medicine at Morehouse. “It’s one of the things that drives my work to ensure people who feel excluded can feel included.”
Hoffman, chair of Morehouse’s Community Coalition Board, spoke of the importance of creating not just advisory boards, but coalitions that govern.
“Our Community Coalition Board is a governing body,” he said. “They didn’t want to be just an advisory board. A coalition means equitable decision making. It flipped the switch from the academic or the clinician being the authority, to the coalition being the authority. It’s engrained in the work we do — we’re not just giving it lip service.”
They’ve even written a book about this process: The Morehouse Model, published by Johns Hopkins University Press.
Along with an abundance of advice on creating successful partnerships, they also shared one “unsuccess” story about a researcher who insisted on using an intervention that involved cold-calling people at home in the evening.
“We were like, ‘Who still has a home phone?’” LaShawn said. “But the researcher had read that this is how you do it. We’re like, ‘Come back and see us in a little while.’ And when they couldn’t get their numbers, they did. You can’t call people cold and ask them questions. They will hang up.”
Akintobi said the researcher was “initially offended” because according to the scientific literature she’d read, this was how you were supposed to do it. But she eventually came around.
“She learned to listen,” Akintobi said. ”She had to understand and make an adjustment to her methodology. She had to unlearn and then she was successful. We work a lot now with that same researcher.”
Professor emeritus Beti Thompson, PhD, who founded health disparities research at Fred Hutch, presented awards to three outstanding health champions during the Pathways to Equity Symposium.
Laura Starr, RN, a public health nurse with the Muckleshoot Health & Wellness Center and a member of the Muckleshoot Tribe, was awarded the Beti Thompson Community Health Champion Award to acknowledge her extraordinary contributions to the health and wellness of her community.
“We best teach the things we experience,” she said. “I’m a cancer survivor and I lost my mom to cancer. I’m dedicating the rest of my career to serving my people. This is my destiny.”
Henderson was awarded the Beti Thompson Cancer Health Equity Research Award for her efforts to improve cancer screening and care for women of color.
“Before I came to Fred Hutch, I wasn’t sure I had a place here,” she said. “But there are people here as passionate about their work as I am, people who don’t do it for recognition, but because it’s the right thing to do.”
Finally, Fred Hutch patient navigation manager Anne Devine, MA, received the Stephaun Wallace Health Equity Staff Champion Award, for her work to make cancer treatment less confusing and frustrating for patients. Devine thanked Harold Freeman, MD, the Harlem-based cancer surgeon who created the concept of patient navigation and said she greatly appreciated the support the team had received from leadership.
“Over the last few years, we’ve grown from two to 12 navigators which has required the support of the administration from the top down,” she said.
A final panel paired two academic researchers with two community health organization leaders to talk about successfully building partnerships between scientists and those who represent traditionally marginalized population groups.
The bottom line: It’s not easy, but it’s definitely worth it.
“You have to be able to deal with messy,” said Wendy Barrington, PhD, director of the Center for Anti-Racism and Community Health, within the UW School of Public Health. “You also need love, grace, patience and flexibility. It’s not if a conflict will happen, it’s when it will happen. Conflict is a necessary part of living, especially when you’re addressing equity and racism in terms of pushing against the status quo. This work is not safe. It takes vulnerability and courage.”
Transparency was also held up as a huge factor in building trust between entities.
“At every stage, we talk about where we are, what we’re capable of doing, what the community is capable of doing,” said Daisy Parra-Padilla, a policy analyst for the Benton-Franklin Health District. ”One of our grants recently fell through, but we still met and discussed next steps with the community. Just being there in person and having translators so all people felt heard was important. The grant fell through, but we showed up.”
Panel member Candace Jackson, chief of community engagement at Neighborcare Health, reminded attendees that when it comes to working with community-based organizations, it’s not just about money.
“Resources come and go,” she said. ”It’s not that we don’t need resources, but if we rely on money to maintain and sustain the relationship, it’s not going very far. We may have one partner who can provide food. Somebody else may have a place. Share that and do that as a mainstay even when resources are plentiful. Recognize the resource that we are.”
Henderson brought the symposium to a close by reminding the audience of a certain four-letter word that had been used throughout the day’s discussion.
“We don’t hear the word love often in science and academia,” she said. “But I believe that’s the reason we’re all here in this room today.”
Photos by Connor/O'Shaughnessy / Fred Hutch News Service
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 dmapes@fredhutch.org. Just diagnosed and need information and resources? Visit our Patient Care page.
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