Health Literacy and Communication Strategies in Oncology

Health literacy—the degree to which individuals can access, comprehend, and use information to make health care decisions—is a critical skill that enables individuals to engage in healthy behaviors to reduce disease risk and improve health outcomes across the continuum of cancer care. However, estimates suggest that more than one-third of the U.S. adult population has low health literacy.

The National Cancer Policy Forum and the Roundtable on Health Literacy of the National Academies of Sciences, Engineering, and Medicine hosted a workshop to examine strategies to better support individuals across the range of health literacy abilities and to consider opportunities to improve communication in cancer care.

Read on to see what workshop participants had to say.

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Promoting Effective Communication in Cancer Care

Many workshop speakers discussed the challenges of effective communication in cancer care and the importance of meeting diverse health literacy needs across the cancer care continuum.

Speakers suggested the following strategies:

Implement communication training programs for oncology clinicians that include strategies for improving listening skills, promoting open dialogue, and tailoring information to match patients’ communication preferences. (Anthony Back, Sylvia Chou, Gwen Darien, Galen Joseph, Nina O’Connor)
Incorporate patient-reported outcome measures to better capture patients’ experiences and care needs, enhance communication, and facilitate shared decision making. (Deborah Collyar, Frank Penedo)
Ensure that clinicians clearly articulate the distinctions and components of palliative care and hospice care and address patients’ and families’ questions about these care options. (Nina O’Connor)
Provide complex health information to patients clearly and concisely, even if simplification reduces precision. (Galen Joseph)
Facilitate open discussion of cancer treatment costs with patients and families by offering training to clinicians and developing patient-centered tools to build health insurance literacy. (Mary Politi)
Assess and proactively addressing patients’ social determinants of health. (J. Leonard Lichtenfeld, Kim Parson)

Communication is not about just being a nice doctor. It is an essential skill set that every oncology clinician should have.
— Anthony Back, University of Washington School of Medicine

Clinicians should communicate clearly, without jargon, in a way that encourages dialogue and conversation.
— Gwen Darien, National Patient Advocate Foundation

Several speakers discussed the importance of effective communication among clinicians, patients, and family members.

Improving Public Health Communication about Cancer

Many speakers discussed opportunities to build public trust by engaging community members in the development and dissemination of public health messaging about cancer. Several speakers also described the emergence of misinformation as a public health threat, and provided strategies to counter inaccurate information about cancer.

Speakers suggested the following strategies:

Disseminate accessible, engaging, and actionable public health information about cancer prevention that uses effective design principles. (Elmer Huerta, Allison Lazard, Cathy Meade)
Create a national council or network to engage diverse stakeholders in developing guidelines, strategies, and tools for communicating evidence-based information about cancer to patients, families, and communities. (Cathy Meade)
Study the effects of exposure to cancer-related health misinformation. (Sylvia Chou)
Partner with social media platforms and using social media to communicate cancer information to the public and respond to misinformation. (Sylvia Chou, Lisa Fitzpatrick, James Hamblin)
Build trust with members of the public and patients by actively engaging them in conversations about health and by communicating health information clearly and in plain language. (Gwen Darien, Lisa Fitzpatrick, Marjorie Kagawa Singer)

We have to show up and engage people where they are in their community. We cannot keep expecting them to come to us.
— Lisa Fitzpatrick, Grapevine Health

While we are disseminating evidence-based information about cancer, we also have to think about how our messages may be countered by false information.
— Sylvia Chou, National Cancer Institute

Several speakers discussed the emergence of false and inaccurate information about cancer.

TAILORING CANCER CARE AND RESEARCH FOR DIVERSE POPULATIONS

Workshop speakers highlighted the importance of meeting health literacy needs of diverse populations and promoting culturally-competent communication. Speakers also emphasized including diverse perspectives and participants in cancer research.

Speakers suggested the following strategies:

Include diverse participants in research. (Galen Joseph, Marjorie Kagawa Singer, Cathy Meade)
Incorporate diverse patient voices in research design and dissemination. (Sylvia Chou, Darci Graves, Cathy Meade)
Develop evidence-based frameworks for integrating culture in oncology research and care. (Elmer Huerta, Marjorie Kagawa Singer)
Disseminate knowledge about the effects of health literacy on health outcomes and further strengthening the evidence base through research that engages under-represented communities. (Cathy Meade)
Adapt patient-clinician communication to meet that cultural and linguistic preferences of patients and their family members. (Darci Graves, Elmer Huerta, Marjorie Kagawa Singer, Ivis Sampayo)

Patient-centered care needs to be culturally and linguistically appropriate. We don’t need to do more—we just need to do better.
— Darci Graves, Centers for Medicare and Medicaid Services

PROMOTING HEALTH LITERACY WITHIN HEALTH CARE ORGANIZATIONS

Many workshop participants described procedures, policies, and programs that health care organizations can employ to assess and address the health literacy needs of patients and their families.

Speakers suggested the following strategies:

Create readiness checklists within health care organizations to ensure that patients’ literacy and communication needs are addressed. (Gwendolyn Quinn)
Regularly assess health literacy needs to identify opportunities to tailor communication and build health literacy skills. (Shalewa Noel-Thomas)
Implement patient navigation programs to address barriers to care, including the potential for reduced access due to health literacy limitations. (Shalewa Noel-Thomas, Mandi Pratt-Chapman)
Train all health care organization employees in best practices for communication and strategies to address the health literacy needs of patients and families. (Lisa Fitzpatrick)
Implement policies within health care organizations to support patient self-management, particularly during key transitions in cancer care. (Heidi Donovan)

Supporting patients and families in the very complex tasks of monitoring, communicating, and managing disease- and treatment-related symptoms is essential for quality cancer care.
— Heidi Donovan, University of Pittsburgh School of Nursing

LEARN MORE

To read the full Proceedings of a Workshop, visit nap.edu/catalog/25664.

FOOTNOTES

[1] Kutner, M., E. Greenburg, Y. Jin, and C. Paulsen. 2006. The health literacy of America’s adults: Results from the 2003 national assessment of adult literacy. (nces 2006-483). Washington, DC: U.S. Department of Education.

SOURCE: NASEM. 2020. Health Literacy and Communication Strategies in Oncology: Proceedings of a Workshop

Statements, recommendations, and opinions expressed are those of the individual participants. They are not necessarily endorsed by the National Academies of Sciences, Engineering, and Medicine and should not be construed as reflecting any group consensus.