Closing the Health Literacy Gap in Blood Cancer Care

Health literacy in cancer care is increasingly being treated as something health systems build rather than a ready skill patients carry with them throughout their care journeys, a shift with practical consequences for how blood cancer specialists explain risk, clarify online misinformation, and move expertise close to patients’ homes. The scale of the problem is not small.

Healthy People 2030 now defines health literacy as the degree to which organizations enable people to find, understand, and use information and services, which places part of the burden on the institution instead of the individual.¹ The Agency for Healthcare Research and Quality’s Health Literacy Universal Precautions Toolkit goes a step further, advising practices to assume any patient may have difficulty understanding health information and to confirm comprehension with techniques such as teach-back.² A National Comprehensive Cancer Network webinar cited that nearly 9 in 10 American struggle to process complex medical information.³

“It does not matter what primary language you speak, what level of education, I feel you can understand your disease, and you can understand treatments. The only difference is what I need to say to get you there,”—Karilyn Larkin, MD

When a Shortcut Becomes a Limit

Inside a cancer center, “low health literacy” often functions as a convenient explanation, but one that can signal that a patient may need a different kind of explanation and may have limited access to online resources. The risk is that the phrase quietly becomes a reason to explain less, explained Karilyn Larkin, MD, director of clinical and translational science for myeloid malignancies at Wilmot Cancer Institute at the University of Rochester, in an interview with The American Journal of Managed Care^® (AJMC^®).

Larkin, who cares for patients with acute myeloid leukemia and performs allogeneic stem cell transplants, draws the line firmly: “It should never be an excuse” for limiting what patients are told or offered. Her working principle applies equally to a patient with a medical degree and to one who has never heard of blood cancer. “It does not matter what primary language you speak, what level of education; I feel you can understand your disease, and you can understand treatments. The only difference is what I need to say to get you there,” she emphasizes.

Literacy also does not map neatly onto access or outcomes. “I don’t think it’s one-to-one,” Larkin said, noting that some of the best-informed patients arrive convinced of a different treatment path they want to pursue, while others, labelled as having low health literacy, simply want to know what to do next.

Almost a decade ago, a survey of older African American adults in a patient-centered medical home reached a related conclusion, finding that 2 common literacy scales did not track disease control and described health literacy as having “limited efficacy” as an assessment tool in that population.⁴ Openness, trust, and willingness to advocate seem to matter as much as test scores, and Larken’s aim is to “meet every patient where they are.”

For myeloma, the same philosophy takes the form of shared decision-making. Nisha Joseph, MD, hematologist and researcher at Winship Cancer Institute of Emory University and associate professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine, points out that “often there’s not a right answer, honestly.” The clinician’s task, then, is to guide rather than persuade, she told AJMC.

“I’m not a salesman. I’m not here to sell you anything. I’m here to give you the information and my opinion and then help you come to a decision.” Even devoted readers “often feel overwhelmed with the options, which is very understandable,” so the conversation is narrowed to a couple of regiments, and the detail is tuned to the individual patients. “Some patients want numbers—what’s the average remission, what’s the incidence—and some people don’t.”

Clarity and Nuance Are Not Trade-Offs

Plain language raises its own concern and the risk of saying too little. Complex therapies carry both benefit and harm, and the temptation to simplify can leave patients with a false picture. Joseph rejects the premise that a choice must be made.

“I don’t think plain language and being clinically accurate are mutually exclusive,” she said. “It might take more time, but I think there’s always a way to do that.”

This means being organized and not omitting. With bispecific antibodies, an immunotherapy class that has changed myeloma care, the discussion is sorted by timeline: “The short term being fever; maybe some confusion, not commonly; the long term being infection and blood counts.” Nothing is hidden, because “there’s always 2 sides to every therapy.”

Larkin sees the opposite hazard just as clearly. A tidy message can backfire when the clinician later has to explain a worst-case scenario. “I do believe that there is a danger in oversimplification,” she said. “Anytime you take somebody who’s been told or read something like, ‘This is how it is,’ and then you try to explain how it’s a lot more nuanced than that, that can immediately lead to mistrust or skepticism, since a patient told a disease works one way may lose trust when a physician later explains that it is more complicated.”

Her remedy is candor about what is still moving. “Answers are always evolving,” she said. As someone who tends to overexplain, Larkin has learned that for some patients “less is more or more basic is better.”

Where Do Patients Look and Who Do They Trust?

Patients often now arrive to appointments with information from chatbots, search engines, artificial intelligence conversations, and even blogs—information that can be beneficial but that also has its drawbacks. For people who have internet access, the tools can break inertia.

“I’m not a salesman. I’m not here to sell you anything. I’m here to give you the information and my opinion and then help you come to a decision.” —Nisha Joseph, MD

“Sometimes that is what it takes to motivate somebody to go see a doctor who maybe would have spent another 3 months not doing that,” Larkin said. The downside can surface when a patient has settled on a conclusion and “aren’t ready to hear what you have to say.”

Larkin has no neat solution, only a standard for the exchange. “You have to have a 2-way street,” and expect that sorting good from bad information can be difficult even for professionals. She described the landscape as “a quagmire of data [and] information that is very difficult for folks to tease out what is good, what is real, what is trustworthy.”

In fast-moving cancers, what is published can lag what is actually practiced. In myeloma, “sometimes what’s published is not even what we do, even if it was published 3 months ago,” Joseph said, because dosing and adverse-effect management often improve before published papers appear. Online accounts of immunotherapy toxicities can sound more frightening than clinicians find them in practice, and wariness is not irrational. Patients may feel “mistrust in the system as well, for very valid reasons,” Joseph added.

Her team responds by giving patients dependable places to land. New patients receive a folder pointing to groups such as the HealthTree Foundation and the Multiple Myeloma Research Foundation, and education is shared across a clinical team. “We do work as a team, particularly in education,” anchored by a myeloma clinical pharmacist who produces written materials patients can take home. Previous research has similarly called for involving nurses, pharmacists, patient navigators, and community health workers.^5,6

Bringing Specialty Care Closer to Home

Understanding a diagnosis is only the first hurdle. Awareness gaps can delay it. Joseph notes that “myeloma is more common in the Black community, and I would say there’s still not as much awareness as I would like in the community.” The American Cancer Society puts the incidence at more than twice the rate seen in White patients,⁷ and previous data show a more than 2-fold higher mortality rate.⁸ Also, as recently as 2023, 1 in every 5 patients diagnosed with multiple myeloma in the US was Black.⁹

Delays are most likely for patients in rural areas who see physicians who rarely encounter the disease. Joseph has worked on both ends of that problem, speaking with support groups, including Black community groups, so patients can advocate for themselves, and building a network of community oncologists across Georgia and the Southeast who can call Emory with questions.

“Most of my phone is community oncologists,” she said.

Distance compounds the problem. Many of Larkin’s patients are rural and underserved. Early-phase trials require in-person visits to monitor toxicity, and the first reaction to a referral is often logistical, with travel time being a primary obstacle. Trust plays a role, too. Research invites “guinea pig comments,” and “it’s incumbent upon the health practitioner” to leave the door open for longer conversations, she emphasizes.

Larkin’s preferred model, which Emory’s network of referring community oncologists parallels, pairs a deep academic conversation with local treatment. Patients travel once to hear what the disease is and what to expect, “and then go home and get treatment that is administered by a local oncologist in the comfort of their community.” Virtual visits, off-site laboratory work, and travel and lodging reimbursement can make the arrangement easier, although patients often do not know such help exists.

For health plans and delivery systems, the open questions are practical ones: how to measure whether a patient truly understands; who funds the pharmacists, navigators, and travel support that make thorough explanation possible; and who academic and community oncology practices are linked. The answers will help determine whether health literacy is treated as a patient characteristic or as a measure of how well a system communicates.

References

1. Health literacy in Healthy People 2030. Office of Disease Prevention and Health Promotion/HHS. Accessed October 11, 2026. https://odphp.health.gov/healthypeople/priority-areas/health-literacy-healthy-people-2030
2. Health literacy universal precautions toolkit, 2nd edition. Agency for Healthcare Research and Quality. Accessed October 11, 2026. https://www.ahrq.gov/es/health-literacy/quality-resources/tools/literacy-toolkit/healthlittoolkit2.html
3. Shaw ML. Lost in translation: cancer care’s growing health literacy crisis. AJMC^®. May 8, 2026. Accessed October 11, 2026. https://www.ajmc.com/view/lost-in-translation-cancer-care-s-growing-health-literacy-crisis
4. Aranha ANF, Patel PJ. Health literacy, preventive health screening, and medication adherence behaviors of older African Americans at a PCMH. AJMC. September 12, 2018. Accessed October 11, 2026. https://www.ajmc.com/view/health-literacy-preventive-health-screening-and-medication-adherence-behaviors-of-older-african-americans-at-a-pcmh
5. Rosenberg J. Implementing solutions to close the rural cancer care gap. AJMC. April 11, 2019. Accessed October 11, 2026. https://www.ajmc.com/newsroom/implementing-solutions-to-close-the-rural-cancer-care-gap
6. Shaw ML, Tyson T, Hill-Collins P. Removing barriers to rural health care equity. AJMC. March 22, 2022. Accessed October 11, 2026. https://www.ajmc.com/view/removing-barriers-to-rural-health-care-equity
7. Cancer facts & figures for African American/Black people 2022-2024. American Cancer Society. 2022. Accessed October 11, 2026. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/2022-2024-cff-aa.pdf
8. De Santis CE, Miller KD, Sauer AG, Jemal A, Siegel RL. Cancer statistics for African Americans, 2019. CA Cancer J Clin. 2019;69(3):211-233. doi:10.3322/caac.21555
9. Bhutani M, Lonial S, Mikhael. Disparities in multiple myeloma among African Americans. J Natl Med Assoc. 2023;115(2S):S26-S31. doi:10.1016/j.jnma.2022.10.001