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In the recent NCCN policy summit "Health Literacy in the Cancer Care Digital Age," speakers and panelists discussed how best to communicate with patients and foster the responsible use of emerging technologies, with a strong focus on shared decision-making.
Between social media, AI chatbots, and wearable health trackers, patients have unprecedented access to information about their health. However, they are also being exposed to misinformation, disinformation, and opinions from sources that don’t know the full story of their health. The same tools that are revolutionizing our ability to deliver care are also making communication more complex.
On May 7, 2026, the National Comprehensive Cancer Network® (NCCN®) hosted a policy summit webinar titled Health Literacy in the Cancer Care Digital Age to address some of the greatest challenges providers are facing in today’s digital landscape. With a strong focus on shared decision-making, speakers and panelists discussed how best to communicate with patients and foster the responsible use of emerging technologies.
The opening keynote was delivered by Robin Vanderpool, DrPH, chief of the Health Communication and Informatics Research Branch at the National Cancer Institute (NCI) and a leader in health communication and technology. She laid the foundation for the webinar by defining digital health literacy as the intersection of health care knowledge and technology skills. While most providers are experienced and equipped to communicate a diagnosis to the patient, health systems must also be prepared to support navigation of online portals and telehealth platforms.
Even patients who are skilled at using technology may need guidance when interpreting the information they find, sorting through high volumes of content to find what matters, and evaluating which sources can be trusted. Digital developments are shaping the role of providers, but Dr. Vanderpool asserted that technology is not removing real people from the process.
“It’s not an either-or circumstance,” she said. “Patients are indeed getting health information from their providers in that trusted way, but they’re also getting health information from many, many other sources, including peers, websites, the news, the government, social media, and AI chatbots.”
Dr. Vanderpool introduced the concept of collaboration among patients, providers, and technology. Depending on the approach, providers can either play catch-up as patients seek information independently, or they can proactively discuss strategies to leverage available tools. “We need health care organizations and health care providers more than ever to be adept in enabling and empowering individuals to navigate cancer care in the digital age,” she said.
A panel with expertise spanning oncology, research, social work, and more discussed how assessing digital health literacy is the first step in ensuring patient-centered care, and it can often be a difficult task. Levent Dumenci, PhD, MS, professor of epidemiology and biostatistics at Temple University Barnett College of Public Health, explained that health literacy is distinct from cancer health literacy. Tools designed to measure general understanding are not always effective at evaluating oncology-specific knowledge. Dr. Dumenci recommends using tests tailored to oncology, such as his 6-Item Cancer Health Literacy Test, and encourages the use of consistent evaluation tools among providers to ensure that terms such as limited cancer health literacy hold the same definition across settings.
Other panelists advised providers to remain aware of their potential biases about which patients might struggle to understand health information and to use trusted evaluation tools instead of making assumptions. Although socioeconomic factors such as race, ethnicity, and education level can be indicators of digital health literacy, they are not causes and do not guarantee a patient’s level of understanding. Temporary factors, such as the emotional distress that comes along with receiving a cancer diagnosis, can also make comprehension more difficult. “Anyone at any point in time can experience poor health literacy,” said Dhruti Ramchandani, MPH, MASM, MCHES, program manager of patient, family, and community education at City of Hope National Medical Center.
To maximize understanding, panelists suggested using visuals, providing printed lists of suggested questions to ask the provider, and offering examples that connect risk to personal lifestyle factors and goals. It is also important to initiate timely communication at moments when patients are most receptive to education.
Another strategy that sparked a deeper conversation was tailoring educational materials to specific patient groups. There are many ways to tailor information, including the language, delivery format, and culturally appropriate word choices. Devlon Jackson, PhD, MPH, assistant research professor at the University of Maryland School of Public Health, explained that, if executed well, these changes can improve adherence, understanding, and patient outcomes. “We have seen positive outcomes with tailoring, but we can also see harm with tailoring if we’re not intentional,” she said. This is another example of how bias and stereotypes can cloud a provider’s evaluation of a patient’s needs. Iterative design and testing processes, with involvement from community members, can determine which tailoring strategies are useful and which are rooted in assumptions about social, cultural, or economic factors.
Don Dizon, MD, FACP, FASCO, professor and chair of the hematology and oncology service line at Tufts Medicine, explained that while individual resources can be tailored, overall systems are not so easily adjusted for individual patient experiences, exposing another gap. He gave the example of transgender patients with cancer, who are often left out of risk assessments and resources stratified by sex or gender. When systems are not built with these patients in mind, digital health resources become even harder to navigate and use.
The panelists also discussed social media as a source of information for both patients and providers, highlighting its strengths as an educational tool. Dana Gaymon Spencer, MDiv, head of strategy and innovation for the Population Health Center of Excellence at Genentech, acknowledged that sites like Facebook and Instagram are excellent for connecting patients to advocacy and support resources. Although the content on these sites could be better regulated and fact-checked, social media use shouldn’t be wholly discouraged.
Laura Chambers, DO, MS, a gynecologic oncologist at The Ohio State University, The James Comprehensive Cancer Center, agreed and said she prefers to encourage responsible use by having open discussions with her patients about how they engage with health content online. One gap she has identified through a recent study is that providers most often use Instagram to discuss clinical trials, while patients are more likely to turn to TikTok to build community and share their experiences. “It would be helpful to get everybody in the same spaces to have these conversations so that you’d be getting that content together,” Dr. Chambers said. This is a potential opportunity to explore how to consolidate digital communication to foster conversations among stakeholders.
The webinar concluded with best practice presentations illustrating how these themes are appearing in the real world. Tim Rinehart, MS, a medical writer at NCCN, discussed how the organization produces guidelines that use inclusive language, maintain an accessible reading level, and incorporate input from patient advocates to ensure resources are appropriate for patients and their caregivers. Elizabeth Wachsberg, a survivor of stage IV colon cancer, shared her own use of social media—first as a patient and then as an advocate—to learn and educate others about screening, diagnosis, and treatment. Finally, Richard Zraick, PhD, CCC-SLP, CHSE, professor at the University of Central Florida School of Communication Sciences and Disorders, discussed the importance of proactively assessing health literacy rather than waiting for patients to ask for resources that they don’t know exist.
Across sessions, speakers were aligned on the importance of patient understanding. Technology can be both a tool and a hurdle, but it is vital that providers and cancer organizations embrace this new landscape and the shifts it brings. Ramchandi summarized this point in the earlier panel discussion when she said, “Health literacy really comes down to respect: respecting our patients and caregiver experiences, respecting what they’re going through, their cognitive and emotional load, and...their right to understand what’s going on and participate.”
