Representation is key to improving cancer care

When facing a cancer diagnosis, one of the biggest decisions you’ll have to make is your treatment.

Feeling confident with your choice takes trust in your health care team and access to all available care options, including cancer clinical trials.

The MultiCare Institute for Research & Innovation* is working to promote clinical trial access and education, and ensure thorough representation in those trials.

Through a recent study and event held in June, MultiCare researchers joined patients and community partners to discuss the importance of this work and how everyone can play a role in improving health outcomes for generations to come.

Why is representation key to improving care?

Adequate representation helps researchers understand the differences each person brings to their health care journey and is critical in improving treatment for everyone, explains Erakwandra Joseph, MPH, community engagement coordinator for the Research Institute.

“We need comprehensive representation of our communities in cancer research to ensure that we’re developing programs and treatments that are responsive to a range of preferences and needs,” adds Chaya Pflugeisen, MSc, MEd, MultiCare research scientist. “If we’re not including people from a range of communities, we may miss the opportunity to understand the nuances in how people experience diseases, adhere to screening programs, process medication and respond to treatment protocols.”

That need isn’t restricted to race and ethnicity, explains Pflugeisen. Researchers also need to look at patients with comorbidities, varying socio-economic barriers, age ranges and other characteristics that are currently underrepresented in the population of cancer clinical trial participants.

Promoting representation in clinical trials will not only improve and expand the care that a patient has access to, but also provide researchers and physicians a better understanding of how specific populations respond to treatment — something that has long been missing, Pflugeisen says.

The lack of representation and awareness in research from screening through treatment is already visible, adds Pflugeisen.

For example, current research shows that bisexual, gay, lesbian, pansexual or women who otherwise don’t identify as heterosexual (queer) are significantly less likely than heterosexual women — by nearly 50 percent — to be screened for cervical cancer. Queer women are also more likely to be uninsured/underinsured or delay or avoid reproductive health care due to previous experiences of discrimination. This makes routine care such as a Pap test, which can detect precancerous cells, less accessible.

“We need to put the burden on the researchers and health care providers to do a better job at understanding what needs are not being met for each patient,” Pflugeisen says.

That work is only possible through partnering with the communities we serve, though, she adds.

Change comes through trust and partnership

“Often in research and medicine, we take action that we genuinely believe is in the best interest of, and is desired by, our patient populations. But the reality is that researchers are often not working in partnership with the community,” Pflugeisen says. “This means that we can miss opportunities, create programs that don’t quite fit or think that we’re addressing priority issues, but actually miss the mark when it comes to patient experience.”

The challenge often begins early with patients not being aware of clinical trial options, and providers not offering that information.

There’s a persistent myth that patients of color, as well as those on state health care plans and those living with substance use disorders, don’t want to participate in clinical trials or aren’t ideal candidates, Pflugeisen explains.

 “We need comprehensive representation of our communities in cancer research to ensure that we’re developing programs and treatments that are responsive to a range of preferences and needs.”

The Research Institute heard from patients in their study that if they had known about clinical trials it would have made a big difference in their care, Joseph says. Others said that simply being given the option and having a say in their care would have been impactful.

That’s why the Research Institute is stressing the importance of inclusive research and education.

Giving patients that information, even if it’s just understanding terminology, allows them to play an equal part in the decision-making, Joseph says. Some patients may choose to participate in research studies because it’s the best treatment for them, while others are moved by the desire to help inform care for the next generation.

Regardless of their reason, it’s the bigger picture of cancer care, Pflugeisen adds.

During the Research Institute’s June community event, “Roots of Change: Cultivating Health Equity in Cancer Research,” patients shared about interacting with the research environment and the value they saw in participating.

“One patient talked about the way when we participate in research, we are paying it forward and opening pathways for those behind us,” Pflugeisen explains. “Even if someone still dies from cancer, we’re opening the door for future patients and generations to have access to evidence-based and tested therapies.”

With that knowledge in hand, there’s still work to be done to improve trust and help people feel comfortable interacting with the research and health care industries, regardless of background, Joseph adds.

Mistrust in health care dates back centuries, but policies like informed consent weren’t put into place until the late 1970s, explains Pflugeisen. The 1978 Belmont Report outlined core principles of respect in research, and the national Office for Human Research Protections was established in 2000.

“The history of mistrust in health care needs to be reframed,” Pflugeisen says. “It’s not the responsibility of the communities we serve to be better at trusting. It’s (the health care industry’s) responsibility to be better at being trustworthy.”

Doing so will take more than checking a box, Pflugeisen adds. It will be slow and involve work at every point of contact a patient has with the health care system.

“You can’t just hear these stories and apologize. You have to respond and follow up,” Pflugeisen says. “Health care systems and research have a lot of trust-building work to do to demonstrate that the research we are doing is ethical, that we are prioritizing the development of treatments and knowledge that will benefit all patients, and that we are not taking advantage of communities or valuing scientific or financial gain over their well-being.”

*The MultiCare Institute for Research & Innovation closed in November 2025. However, MultiCare continues to conduct research at Pulse Heart Institute, MultiCare Cancer Institute and MultiCare Mary Bridge Children’s, among other areas within our organization. To learn more about clinical trial opportunities, talk to your provider or visit ClinicalTrials.gov.