Designing patient education in cancer care for health equity

Examining racial health disparities in cancer

Like most other disease states in the U.S., there are steep racial health disparities when it comes to cancer. According to the National Cancer Institute (NCI), Black people have higher mortality rates for most types of cancer compared to other racial/ethnic groups.

Meanwhile, breast cancer is typically more deadly for Black women than for White women, and Hispanic, Black and American Indian/Alaska Native (AI/AN) women are more likely to have cervical cancer than other racial/ethnic groups.

"Cancer disparities reflect the interplay among many factors, including social determinants of health, behavior, biology, and genetics -- all of which can have profound effects on health, including cancer risk and outcomes," NCI says on its website.

What's more, an individual's experience with the healthcare system can influence their likelihood of having cancer and potential cancer outcomes.

"For example, people with low incomes, low health literacy, or long travel distances to screening or treatment sites, or who lack health insurance, transportation to a medical facility, or paid medical leave are less likely to have recommended cancer screening tests and to be treated according to guidelines than those who don’t encounter these obstacles," according to NCI.

Ameliorating these problems will require a multi-pronged approach, most experts agree. A comprehensive social determinants of health and health equity strategy will be critical to close gaps in cancer outcomes.

According to VanRiel, a different experience in the clinical setting will also be essential, calling specifically for better cancer patient education that promotes health equity.

What does equitable cancer education look like?

According to VanRiel, current patient education for cancer is overly complex, which can be alienating for any patient and especially those from traditionally underserved groups.

"Sometimes the education materials can be written in complex medical jargon, only be offered in English or just fail to address culturally specific concerns," she explained. "In many cases, those resources can overlook the real-life barriers that patients face, including limited transportation, inadequate insurance or even medical mistrust that can be rooted in past discrimination."

When patients can't access educational materials -- either literally or figuratively -- those tools are essentially ineffective. Being that strong patient education is the bedrock of strong patient engagement, this lack of quality information can get in the way of good outcomes.

But there is a way for these patient education tools to improve, VanRiel stated.

"Health equity must be embedded in every stage of cancer education, from prevention and screening to diagnosis, treatment and survivorship," she asserted.

Perhaps most obviously, this must begin with language access. Although there are federal regulations for language interpreter services during clinical encounters, patient education materials don't always follow those same guidelines, potentially isolating folks with limited English proficiency.

While most healthcare organizations already translate their patient-facing materials into Spanish, VanRiel said they should take this a step further and broaden the scope of languages served. This might entail doing an analysis of the organization's patient population to understand all languages spoken in that facility's catchment area.

Organizations must also ensure their patient education materials are accessible for folks with disabilities, meaning they are offered in Braille and large print and are screen-reader accessible.

As organizations reconsider their cancer patient education strategies, VanRiel recommended conducting an audit the examines key aspects to make materials more equitable:

• Health literacy level.
• Translated into multiple languages.
• Reflects diverse cultural beliefs and experiences.
• Optimized for vision-impaired and hard-of-hearing patients.
• Offered across multiple media.

Rethinking health literacy and navigation

It's not just the clinical information that patients need more of. VanRiel also indicated that cancer patients need more support in terms of health system navigation.

"Look at workshops or digital platforms that can teach patients how to ask questions, understand medical jargon and understand what their rights are," she advised.

Doing so will allow patients to make informed decisions based on their personal values and their overall experiences with the healthcare system. This is especially important for cancer patients, who will need to navigate a complex web of clinical and social resources as they undergo their treatment for serious illness.

Enabling patient education for all

Ensuring everyone, regardless of demographic, has access to comprehensive patient education materials when they get a cancer diagnosis seems obvious. However, equitable access to these tools has likely been stymied by implicit bias in the medical setting.

VanRiel said she's seen it firsthand, particularly when completing some medical research. Healthcare providers treating patients they believe might have low health literacy or another barrier to understanding might gloss over some pertinent information when discussing cancer treatment.

"Clinicians talk a different way to people with different educational levels. They might present the higher level of information, and then when they're talking with someone who has a lower level of education, they don't even present different things because they don't think they can understand it," VanRiel explained.

Doing so would be a mistake, she added. For one thing, nobody is ever ready for a cancer diagnosis, and the shock of the system and the sheer complexity of the medical journey that lies ahead can often defy health literacy and education level.

Perhaps good-intentioned, healthcare providers should avoid selecting their patient education materials and discussions based on patient demographics, VanRiel concluded. Instead, providers should invest more time in helping to connect the dots for all patients, making it easier for them to effectively share all treatment options.

Sara Heath has covered news related to patient engagement and health equity since 2015.