#United States #Washington D.C. #NCCN #Cancer Care #Health Information

NCCN Hosts Patient Advocacy Summit on Improving Access to Accurate Health Information

The National Comprehensive Cancer Network® (NCCN®) recently convened a significant Patient Advocacy Summit in Washington, D.C., aimed at enhancing the accessibility and reliability of health information for cancer patients. This annual gathering unites esteemed experts in oncology to address practical and policy-oriented solutions that empower patients in their healthcare decisions.

This year’s summit placed a spotlight on combating misinformation and effective strategies for sharing precise, evidence-based health information, vital for patients and their caregivers. Dr. W. Kimryn Rathmell, Director of the National Cancer Institute (NCI), delivered an enlightening keynote address, alongside persuasive panel discussions featuring experts like Dr. Robin Vanderpool, Chief of the NCI’s Health Communication and Informatics Research Branch.

The pivotal message from Crystal S. Denlinger, CEO of NCCN, highlighted, “When cancer patients are provided with trustworthy and transparent information, they are better equipped to make informed decisions.” Dr. Denlinger emphasized that to achieve improved patient outcomes, healthcare providers and organizations must present clear, accessible, and relatable information tailored to the diverse needs of patients facing cancer.

One cornerstone of the summit was the NCCN Guidelines for Patients, which offers comprehensive yet straightforward explanations of the latest evidence-based recommendations related to various cancer types. These guidelines are made available in multiple formats and languages, including books and webinars, all free through the NCCN organization.

The summit underscored how effective communication is crucial in a landscape often laden with medical jargon that can perplex patients. Experts spoke about the importance of adopting a language that resonates with patients and their families, reinforcing the notion that understanding can significantly affect treatment decisions and outcomes.

Moreover, speakers raised concerns regarding misinformation and the imperative to debunk myths that could lead to detrimental consequences for patient trust and treatment choices. As discussed by Martha Dawson, Immediate Past President of the National Black Nurses Association, empowering community advocates and trusted professionals is essential in addressing this misinformation crisis. “The lessons learned during the COVID-19 pandemic clearly illustrate the value of having credible voices intervening against misinformation,” Dawson noted, emphasizing the need for community-level education and support to combat misperceptions effectively.

Skyler Johnson, MD, from the Huntsman Cancer Institute, highlighted that misinformation could delay treatments and further confuse patients already grappling with difficult diagnoses. He advocated for proactive measures to resolve these challenges, emphasizing that patients require clear, trustworthy information to aid their health-related decisions. Clear messaging must be accompanied by efforts to establish and nurture trust in the patient-provider relationship, which is pivotal in navigating the healthcare experience.

Central to the summit's discussions was the commitment to build trust through consistent and straightforward health messaging, particularly as patients begin their cancer journey. Experts urged presenters to focus on inclusive communication that fosters patient engagement right from the start of their diagnosis. Randi Ervin, an advocate and survivor from the Pancreatic Cancer Action Network, shared her experiences underscoring the impact of empathetic conversations during critical moments for patients and families.

The forum concluded with a unifying theme: every interaction in patient care matters greatly. As Bryce Reeve, Professor at Duke University School of Medicine, reminded attendees, ensuring every patient’s voice is heard is a collective responsibility across sectors — from academia to community health organizations. Future collaborations with community leaders and healthcare professionals will enhance efforts towards fighting misinformation and promoting equitable access to cancer care.

Looking ahead, participants eagerly anticipate the next series of NCCN Oncology Policy Summits, which will further delve into collaboration opportunities between primary care and oncology as well as innovative approaches involving artificial intelligence and veteran care needs.

In sum, the NCCN summit served as a robust platform for education, collaboration, and advocacy, reaffirming the organization’s commitment to improving health outcomes for all individuals facing cancer. For more details on previous summits or inquiries about future events, visit NCCN.org.