NCCN Patient Advocacy Summit: Navigating Communication, Health Literacy, and Misinformation

On December 6, 2024, experts participating in the 2024 National Comprehensive Cancer Network (NCCN) Patient Advocacy Summit presented critical insights into the evolving landscape of oncology while spotlighting efforts to combat misinformation and advance health literacy. The NCCN Summit speakers emphasized the importance of innovation, collaboration, and communication in transforming cancer care.

W. Kimryn Rathmell, MD, director of the National Cancer Institute of the National Institutes of Health (NIH), introduced the concept of a 360 era in cancer research that is marked by inclusivity, collaboration, and technological innovation. The increasing use of multi-principal investigator grants that bring together a diverse range of expertise is central to addressing complex challenges. Involving patient advocates in multidisciplinary teams further enriches the research ecosystem by fostering innovation and enhancing outcomes. “Leveraging crowd-sourced data and challenging established norms fosters innovation and improves research outcomes,” emphasized Dr. Rathmell.

Some of the key priorities addressed by speakers at the summit included preventing, detecting, and treating cancer effectively while improving the patient's experience. In addition, efforts to maximize data utility to eliminate inequities, enhance workforce diversity, and ensure access to high-quality care are becoming increasingly important. These efforts are strengthened by resources like the Physician Data Query; in addition, the Cancer Information Service provides evidence-based, accessible information tailored to diverse audiences. This resource is available in multiple languages and formats to bridge gaps in health literacy and foster informed decision-making.

A Hopeful Outlook with AI

Artificial intelligence (AI) and other emerging technologies are revolutionizing cancer diagnosis and treatments. One promising innovation is TrialGPT, a tool that personalizes clinical trial searches and streamlines enrollment. Dr. Rathmell expressed optimism in tools like AI, because they help personalize searches and improve access to clinical trials in ways that were not possible in the past. Such advancements are pivotal in addressing the rising incidence of early-onset cancers and adapting to evolving patient demographics.

“There [are] 2 areas [in which] I see AI being a great benefit to this space. The first is managing information overload. The second big opportunity with AI is with how quickly we can get information out,” explained Deepa Chari, vice president and head of global scientific communications at GSK. The ease of proliferating misinformation and disinformation poses a significant challenge to advancing health literacy. False narratives on health and medicine often exploit emotional appeals and undermine trust in credible sources. The NCI’s strategy includes ensuring the development of factual and transparent information and acknowledging uncertainties in scientific research to build trust.

Battling Misinformation Through Patient Education

Effective communication is central to combating misinformation and empowering patients. Bryce Reeve, PhD, highlighted the need for an adaptive system that facilitates meaningful dialogue between care teams and patients. He commented, “We need to figure out a better way of making the state available but also [ensure] that the clinician [helps] the patient to digest that information in a timely way.” This approach involves actively listening, using plain language guides and visual aids to enhance understanding, and progressively introducing technical terms as patients’ knowledge grows.

Demystifying medical terminology is another crucial aspect of successful patient communication. Simplifying terms like neuropathy and inflammation and presenting complex concepts in accessible ways, such as using visual aids to explain treatment adverse effects, promotes health literacy. Melinda Butsch Kovacic, MPH, PhD, lead investigator at We Engage 4 Health, emphasized balancing technical accuracy with patient comprehension: "We can’t get away from higher literacy words. We just have to explain what they mean in a way that people understand.”

Patient and family engagement is a cornerstone of effective oncology communication. Techniques like the teach-back method, in which patients explain their understanding of treatments, ensure clarity and empower active participation in their care. Care teams can foster trust and adherence by connecting medical recommendations to tangible outcomes such as explaining how vaccinations prevent specific cancers.

The Importance of Advocacy in Cancer Treatment

Organizations like the HPV Cancers Alliance in New York, New York, exemplify effective communication and advocacy. Executive Director Lillian Kreppel—a survivor of stage II, HPV-related anal cancer—explained her organization’s mission to normalize conversations about HPV and encourage preventive measures. By addressing misinformation and stigma surrounding HPV-related cancers, members of the alliance advance education, outreach, and personal engagement. Their efforts include hosting webinars, participating in public events, and advocating on Capitol Hill as part of initiatives like Cancer Moonshot. Grassroots initiatives such as engaging individuals in discussions about vaccination and prevention show the transformative power of personal interaction.

Social media’s role in spreading misinformation is a pressing concern, particularly for newly diagnosed patients seeking reliable information. Clifford Goodman, PhD, a consultant for health care technology and policy, noted, “The explosion of social media has enabled sources of misinformation and disinformation to be diffused so widely. This is hard to counter.” A call for government-sanctioned verification systems, such as checkmarks for credible organizations and experts, aims to simplify the process of identifying trustworthy resources. Tim McDonald, a survivor of stage IV colorectal cancer and an ambassador for FightCRC, emphasized the potential impact, commenting, “Imagine if we had government agencies [and] nonprofit organizations in this field that were verified that could help patients like me understand what I’m dealing with.”

Combating misinformation requires nuanced strategies that respect patients’ perspectives while presenting correct information. Debunking false beliefs must be approached carefully to avoid reinforcing misconceptions. Organizations like the NIH and the FDA are encouraged to actively promote reliable information.

Ultimately, effective oncology communication demands a multifaceted approach. This includes contextualizing medical information, fostering adaptability, and prioritizing patient engagement. By enhancing health literacy, reducing stigma, and leveraging technology, these efforts empower patients and families to make informed decisions and improve their overall experience within the health care system. The combined insights from experts and advocates as highlighted at the NCCN Patient Advocacy Summit illustrate the transformative potential of communication in advancing oncology care.