The Importance of Health Literacy in Cancer Care
October 2024
October is Health Literacy Month, and we’re excited to feature insights from guest contributor Tricia Mullins, Executive Director, Global Head of BeiGene’s Early Patient Engagement & Professional Societies Team.
Ensuring patients are heard and have the resources they need to have meaningful treatment or clinical trial discussions with their healthcare team is a priority for BeiGene as we strive to put patients first. We share below some key components to making sure patients and care partners get the information they need in a meaningful way.
Importance of Health Literacy in Cancer Care:
- Health literacy is vital for helping patients understand complex information about their diagnosis, treatment options and potential side effects. It’s especially crucial in cancer care due to the emotional and technical complexity of the disease.
- Informed decision-making: Patients need to understand their cancer care options to make informed decisions and give proper consent.
- Treatment adherence: Simplified instructions help patients follow treatment protocols, potentially improving outcomes.
- Health equity: Clear materials reduce disparities, particularly for patients from underrepresented or lower socioeconomic or educational backgrounds.
Key Components of Effective Health Literacy Materials:
- Plain Language: Use concise, clear language with minimal medical jargon.
- Cultural Sensitivity: Provide materials in multiple languages and account for cultural preferences.
- Visual Aids: Use infographics to explain complex concepts.
- Relevance: Tailor materials to the patient’s stage in their cancer journey.
- Actionable Steps: Include guidance for patients to engage actively with their care team.
- Accessibility: Ensure materials are readable (5th–8th-grade level), use large fonts and include options for deeper learning.
Tailoring Materials for Diverse Populations:
- Cultural relevance: Acknowledge beliefs and practices that may affect care decisions.
- Language adaptations: Provide accurate, nuanced translations in multiple languages.
- Socioeconomic considerations: Ensure access to information through print and digital formats, catering to all financial and technological capacities.
Role of Caregivers in Health Literacy:
- Caregivers as key support: They often help interpret medical information, manage treatment, and navigate daily care activities.
- Empowerment tools: Materials should address both patient and caregiver needs, offering guidance on care responsibilities and emotional support.
Impact on Treatment Decision-Making:
- Shared decision-making: Health-literate materials foster collaboration between patients, caregivers and healthcare providers.
- Patient autonomy: When patients understand their options, they feel more confident and empowered, improving adherence and satisfaction.
Challenges for Rare or Complex Cancers:
- Limited resources: Rare cancers often lack accessible information, making patient education more challenging. Rare cancers may also affect finding the right physician or cancer care team that has expertise in their rare cancer
- Collaborative solutions: Work with experts and patient organizations, including rare disease umbrella groups, to develop clear, accurate materials tailored to rare cancer types.
Addressing Emotional Aspects of Cancer:
- Compassionate language: Use empathetic communication to acknowledge the emotional toll of cancer.
- Mind-body resources: Provide coping tools like mindfulness, stress management, and mental health referrals.
Role of the Pharmaceutical Industry:
- Simplify trial communications: Break down complex information into patient-friendly language, ensuring transparency throughout the trial process.
- Include patient insights in drug development to create clinical trial materials that are health literate.
- Support care partners: Provide comprehensive materials for both patients and their caregivers, including medical information and emotional support.
If you or a loved one has cancer, please seek out materials and resources that provide you with the best opportunities to learn and cope with your diagnosis.
Thank you to Tricia and the Early Patient Engagement Team for their work in enhancing health literacy and developing accessible, patient-centered materials for patients and their care partners.
Let’s Talk About It is our monthly blog series designed to talk frankly about some of the real-life challenges and the resiliency of living with a diagnosis of cancer, as well as to provide resources and empower others. If you have topics you’d like Lisa Porat or guest contributors to explore, please email us patientadvocacy@beigene.com with your ideas.
We believe in you and the power of your story. We thank you for sharing your journey with us and others.
Lisa Marquette Porat, MSW, LCSW, FAOSW is an oncology social worker and the U.S. Lead, Patient Advocacy for BeiGene