Lost in Translation: Cancer Care’s Growing Health Literacy Crisis

Author(s)Maggie L. Shaw

Fact checked by: Christina Mattina, Tracy Ann Politowicz

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Key Takeaways

Health literacy failures in oncology are systemic and inequitable, intensifying disparities because cancer care demands complex, high-stakes understanding for adherence, outcomes, and therapeutic alliance.
Cancer-specific health literacy measures (CHLT-6/30) better predict decision-making efficacy than TOFHLA or REALM, supporting routine, non-stigmatizing screening integrated into clinical workflows.
Digital health’s scale—apps, wearables, algorithmic feeds—creates critical digital literacy demands; tailored, community-validated materials improve comprehension, engagement, and outcomes.
Social platforms disseminate low-accuracy cancer education content, and AI can both broaden access and mislead via hallucinations, necessitating clinician engagement and policy-level credibility markers.
Shared decision-making requires eliciting patient and family role preferences and translating risks/benefits into personally meaningful outcomes that connect numerical data to values and daily function.

An NCCN Policy Summit webinar on May 7 warned that cancer care is failing patients, as poor health literacy, misinformation, and digital overload widen gaps in understanding.

At a moment when nearly 9 in 10 Americans struggle to process complex medical information, the arrival of a cancer diagnosis can often trigger a secondary crisis: a total breakdown in comprehension. With close to 40% of women and men in the US expected to receive a cancer diagnosis in their lifetime and 18.6 million cancer survivors currently navigating the health system,^1,2 the gap between what providers say and what patients understand has real consequences for treatment adherence, clinical outcomes, and trust.

The stakes for improving patient-provider communication have never been higher, when, despite decades of awareness, health literacy remains a problem in clinical settings.

“Health Literacy in the Cancer Care Digital Age,” a Policy Summit webinar from the National Comprehensive Cancer Network (NCCN) on May 7, convened clinicians, researchers, patient advocates, and industry leaders to confront this challenge that is simultaneously ancient and urgent: When patients cannot understand what they are told, care fails them regardless of its clinical quality.

A Crisis Hidden in Plain Sight

Crystal S. Denlinger, MD, CEO of the NCCN, framed health literacy not as a patient deficiency but as a systemic failure, one that disproportionately harms people already coping with one of the most complex diagnoses that medicine has to offer.

“While difficulties understanding medical terminology can impact treatment adherence and outcomes for patients dealing with any medical condition,” she said, “the risks and complexities inherent to a cancer diagnosis serve to heighten disparities in health literacy levels and their corresponding patient outcomes.”

Robin C. Vanderpool, DrPH, reinforced framing health literacy at the intersection of communication science, digital technology, and health equity. She described a health information environment that has grown so complex and contradictory that even engaged, motivated patients can be led astray. Vanderpool is chief of the Health Communication and Informatics Research Branch in the Division of Cancer Control and Population Sciences at the National Cancer Institute.

“We find ourselves in a very noisy and a very complex health communication ecosystem, where health information changes, maybe by the minute, if not by the day, and we are overloaded by all the different technologies that we have available to us,” she explained.

Measuring the Digital Deluge: More Information = Less Understanding

That there also is an inadequacy of existing tools to detect limited health literacy in patients with cancer was a central theme of the webinar. Levent Dumenci, PhD, MS, professor of epidemiology and biostatistics at Temple University’s Barnett College of Public Health, drew a distinction between general health literacy and cancer-specific health literacy, with profound clinical consequences. Dumenci and his team developed and then evaluated—among more than 1300 patients with cancer—the Cancer Health Literacy Test (CHLT)-6, designed to identify individuals with limited cancer health literacy, and CHLT-30, designed to measure cancer health literacy along a continuum.³

“We used [the] efficacy of making health decisions as an outcome because this is the only outcome embedded in the definition of health literacy. Controlling for important covariates, we found that cancer health literacy is a significant predictor of medical health literacy,” he highlighted. “What was surprising was [that] the 2 most widely used hospital instruments, TOFHLA [Test of Functional Health Literacy in Adults] and REALM [Rapid Estimate of Adult Literacy in Medicine], were not predictive of our outcome…they basically know nothing.”

Another consensus was that the digital revolution has invariably transformed how patients seek health information—but not always for the better. Beyond the more than 350,000 health-related apps available in the Apple App Store, according to Vanderpool, wearable devices generate continuous data streams; social media algorithms curate health content based on engagement, not accuracy; and artificial intelligence (AI) tools are beginning to function as a new kind of medical adviser—one that does not always tell the truth, several panelists noted.

Devlon Jackson, PhD, MPH, assistant research professor of behavioral and community health, Department of Behavioral Health, University of Maryland School of Public Health, described the challenge of critical digital literacy, or the ability to find health information and evaluate its credibility across a fragmented and often misleading information ecosystem. She spoke of the importance of intentional, culturally informed tailoring of health information and continuous testing.

“When we tailor the materials, health information, as well as digital health tools, it can improve adherence to using these materials, understanding of these materials, and health outcomes,” she said. “However, we have to be really intentional when we think about the tailoring…we have to find out from community members if that is what they want to see and if that is going to influence their use.”

Laura Chambers, DO, MS, a gynecologic oncologist at The Ohio State University Comprehensive Cancer Center–Arthur G. James Cancer Hospital and Richard J. Solove Research Institute, whose research focuses on social media and cancer, offered sobering data on the accuracy of cancer information circulating on platforms such as TikTok and Instagram.

“I think the reliability issues are significant. I’ve done several studies now where we’ve looked at posts that have been created on TikTok [and] Instagram,” she explained. “We’ve reviewed the posts for their content and the accuracy of the information, and really across the board, we found that there’s really low overall accuracy of content, especially content that’s driven to be educational.”

The Promise and Peril of AI in Cancer Care

AI was simultaneously one of the webinar’s most discussed tools and one of its most cautionary topics. The panelists drew a careful distinction between AI’s potential to lower barriers to information—acting as what some called “Dr Google 2.0”—and its documented tendency to generate confident-sounding, factually incorrect responses, a phenomenon known as hallucination.⁴

Dana Gaymon Spencer, MDiv, who leads strategy and innovation for population health at Genentech and speaks from both professional expertise and lived experience as a patient, called for policy-level intervention to establish credibility markers for AI-generated health content, “because the truth is that it is a systemic problem; it’s not just an individual problem.” She explained that data from HHS’ Healthy People 2030 “basically redefined the definition of health literacy to include organizational health literacy, and that definition of organizational says that organizations within the health care system have a responsibility to ensure that the things that they put out for patients and caregivers are plain language, culturally relevant, and meet the needs of the patients.”

The panel reached a broad consensus that providers should neither dismiss nor discourage AI and social media use, but instead use them as bridges, inviting patients to share what they have found online and treating those conversations as clinical opportunities.

From Passive Recipients to Active Partners

Shared decision-making, the collaborative process through which patients and providers jointly navigate treatment choices, emerged as a recurring theme and an ongoing casualty of inadequate health literacy. When patients cannot fully understand their options, they often default to passive acceptance, agreeing with whatever their provider recommends without genuine engagement.

Don Dizon, MD, the Jane F. Desforges, MD, Chair in Hematology and Oncology, Tufts University School of Medicine, brought a culturally informed perspective to the discussion. He noted that decision-making autonomy is not a universal value and that providers must first understand a patient’s and their family’s preferences for involvement before assuming what shared decision-making should look like.

“We need to understand, when it comes to it, that everyone is going to enter that space with their own preference of how involved they want to be,” he stated. “Now, if we take that into account, we need to ask ourselves, when it comes to this person in this decision, who else needs to be in that room to hear this conversation, who else needs to have the understanding of what the latest literature is?”

Dhruti Ramchandani, MPH, MASM, MCHES, program manager and gerontologist at City of Hope National Medical Center, described the systemic changes required to make health literacy an organizational priority rather than an afterthought. Prompted by moderator Cliff Goodman, PhD, a consultant in health care technology and policy—who over a decade ago noted to The American Journal of Managed Care^®, “Most patients consider they have insufficient information upon which to base decisions at the time they’ve got to make those decisions”⁵—Ramchandani discussed the importance of translating numerical data into what patients and their care teams care about.

“One area that wasn’t mentioned [is] customizing and making it known how this will impact you personally,” she said. “That looks like, ‘If you take your treatment on this day, then you may feel well enough on day 7 to do this activity that’s really important to you.’ I think connecting the numbers to values is also important, as best as that’s feasible to do.”

Building Organizations That Patients Can Navigate

The webinar’s final moments turned from individual communication strategies to systemic transformation. A “health literate organization,” as defined by the National Academy of Medicine, is one that ensures equitable access to understandable health information and embeds that commitment into its leadership, operations, and culture.⁶

From plain language standards to patient advisory committees to state-level policy frameworks, the panelists agreed that to deliver a consistent message, health literacy cannot be a project with a finish line. It is an ongoing institutional commitment that must evolve as the information landscape changes, and health literacy screening should be embedded into clinical workflows as naturally as vital signs—not as a judgment of a patient’s intelligence, but as a clinical signal that shapes how a provider communicates.

The panelists called on listeners to encourage patients to ask questions, implement validated screening tools, distinguish education from understanding, respect the patient’s experience, and, above all, recognize that health literacy is not the patient’s problem to solve. It is the health system’s responsibility to address.

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