Health Literacy and Communication Strategies in Oncology Proceedings of a Workshop (2020) / Chapter Skim
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Proceedings of a Workshop
Proceedings of a Workshop
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. Low health literacy can also impede informed decision making, especially as cancer care becomes increasingly complex and as patients and their families take more active roles in treatment decisions.
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The following topics were explored: • Strategies to enhance communication among diverse populations with varying levels of health literacy and to promote culturally competent communication; • Opportunities to improve patient–clinician communication across the cancer care continuum; • Media and public health strategies to build public trust and convey accurate information about cancer; • Research strategies to promote health literacy and communication; • Opportunities for health care organizations and insurers to improve communication and support health literacy; and • Stakeholder perspectives and priorities for communication and health literacy in oncology. This workshop proceedings highlights suggestions from individual participants regarding ways to improve communication in cancer care and better support individuals across the range of health literacy abilities.
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Improving Public Communication About Cancer • Disseminate accessible, engaging, and actionable public health information about cancer prevention that uses effective design principles. (Huerta, Lazard, Meade)
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Tailoring Cancer Care and Research for Diverse Populations • Include diverse participants in research. (Joseph, Kagawa Singer, Meade)
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health services should be delivered in ways that are understandable to patients and that improve health, longevity, and quality of life. She added that achieving these principles can be particularly challenging in oncology because of the complexity of cancer care.
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. Culture in Cancer Care and Communication Kagawa Singer noted a major challenge in achieving effective communication among culturally diverse populations: the majority of health psychology researchers and participants in health psychology research are from WEIRD countries -- Western, educated, industrialized, rich, and democratic.
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. Kagawa Singer said that the health care community should recognize that there are fundamental differences in cultural constructs and should view cultural differences as assets and sources of strength for patients and their families.
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Sampayo noted that, through the use of accessible media such as comic books, even children and teenagers can learn about cancer prevention and can help serve as educators for their families. Culture in Cancer Research Kagawa Singer discussed the application of culture in health research.
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COMMUNICATION ACROSS THE CANCER CARE CONTINUUM Many workshop participants discussed strategies and best practices to improve patient–clinician communication and meet patients' health literacy needs across the continuum of cancer care. Prevention and Screening Cathy Meade, senior member in the Division of Population Science, Health Outcomes, and Behavior at the Moffitt Cancer Center, discussed the need for effective cancer prevention communication.
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advocate for the creation of a national council or network that engages diverse stakeholders in establishing guidelines, procedures, and tools for communicating evidence-based information about cancer risk, prevention, detection, and treatment to patients, families, and communities. Cancer Treatment Anthony Back, professor of oncology at the University of Washington School of Medicine and co-director of the Cambia Palliative Care Center of Excellence, stressed that effective patient–clinician communication is critical, especially as cancer care becomes more complex.
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Back said that supporting communication competencies among clinicians is critical for achieving high-quality cancer care (Bernacki et al., 2019; aladino P et al., 2019) : "Having these conversations improves patient outcomes," said Back.
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with strong communication skills, which improves patient care (Tulsky et al., 2011)
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Deborah Collyar, founder and president of Patient Advocates in Research, emphasized that all patients and families, no matter their level of education, experience shock when they receive a cancer diagnosis, which can impede effective communication. Collyar suggested that decision-making tools and templates be developed for clinicians to use during cancer care, particularly during enrollment for clinical trials.
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These concerns are relevant at various times throughout the continuum of cancer care (see Figure 4)
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FIGURE 4 Time points for discussing reproductive health with adolescents and young adults with cancer. 15 SOURCE: Quinn presentation, July 15, 2019.
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Survivorship Care Frank Penedo, associate director for cancer survivorship and translational behavioral sciences at the University of Miami Miller School of Medicine's Sylvester Comprehensive Cancer Center, discussed challenges in communicating health information among the growing population of cancer survivors.9 He noted that as of 2019, there were more than 16.9 million Americans living with a history of cancer, a number projected to reach more than 26.1 million by 2040 (Bluethmann et al., 2016)
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Some responses trigger automatic alerts to social work or nursing staff. 10 Survivorship care plans include a comprehensive summary of oncology care and a follow-up plan, and serve to facilitate communication between patients and their care teams after discharge from cancer treatment (IOM, 2006)
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. Palliative care is provided in partnership with the patient's care team and is available any time during cancer care, regardless of the other treatments a patient receives (see Figure 5)
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Clinicians may also find it difficult to broach the topic of palliative care and advance care planning without training, because they fear it may take away a patient's hope. However, "there are many ways we can teach health care providers to talk about palliative care while maintaining hope," said O'Connor.
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It would also fund research on best practices for palliative care and a public awareness campaign about palliative care. To ensure that every University of Pennsylvania Health System patient with serious illness at has a conversation about advance care planning, O'Connor and her colleagues employ a strategy developed by Ariadne Labs and the Harvard T.H.
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Chou described two NCI initiatives to promote research on public communication and strategies to address misinformation in cancer. The first is a funding opportunity to develop innovative approaches to studying cancer communication across the continuum of cancer care in the evolving media
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She suggested that the public health community partner with social media platforms to promote the dissemination of accurate health information. James Hamblin, writer and senior editor at The Atlantic, suggested that the public health community participate actively in social media to disseminate credible information and counter misinformation.
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The DC Department of Health's Thriving and Surviving workshop series, for example, includes seven weekly 2.5-hour sessions on self-management and communication skills led by cancer survivors or caregivers. For those with low health literacy, she said that more intensive services are warranted, including involvement of community health workers, as well as patient navigation for people diagnosed with cancer.
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He noted that members of the public, as well as professional organizations, expect ACS to serve as a trusted source for information about cancer; to convene and provide leadership in the fields of cancer research and policy; to embrace health equity; and to meet the needs of patients, caregivers, and the general public. Wender said that ACS views its mission as a "360 degree effort" across a variety of activities and venues (e.g., online chat, call centers, personal guidance, and scientific articles)
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Community Engagement and Health Communication Lisa Fitzpatrick, founder of Grapevine Health and lecturer at the Milken Institute School of Public Health at The George Washington University, started to think about opportunities to engage the public with effective health communication when she was asked by an audience member at a presentation how to find answers to health questions outside of clinician office visits. Years later, Fitzpatrick secured a small grant from The Commonwealth Fund to evaluate the potential for broadly disseminating accessible health information through digital media.
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. These deficiencies are important, he explained, because a large proportion of the population seeks health information from online media; in a 2010 poll surveying 1,066 adults, 88 percent reported looking for health information online (Harris Poll, 2010)
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RESEARCH STRATEGIES Many workshop participants discussed ongoing research in the fields of health literacy and communication in oncology, as well as avenues for future research, such as communication about cancer genetics, visual design strategies in messaging, and health insurance literacy. National Cancer Institute's Research Portfolio and Priorities for Future Research April Oh, program director of the NCI Health Communication and Informatics Research Branch, said that addressing health literacy and its contributions to health disparities is a major NCI research priority.
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This change reflects the understanding that health literacy cuts across a wide range of health issues and is fundamental to achieving health equity. An internal review of NCI's portfolio of health literacy research found that grant applications with aims related to health literacy primarily focused on the development or evaluation of interventions within particular racial or ethnic populations and addressed cancer screening, informed and shared decision making, or patient–clinician communication.
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However, there are ongoing challenges for integrating genetics in cancer care. One of these challenges is the underrepresentation of minority populations in genomic databases, which creates barriers to high-quality care for diverse populations (Smith et al., 2016)
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She added that clinicians should strive for clarity and conciseness when communicating complex health information, even if this simplification reduces precision. Visual Design Strategies to Improve Cancer Communication Allison Lazard, assistant professor in the Hussman School of Journalism and Media at the University of North Carolina at Chapel Hill and associate member of the Lineberger Comprehensive Cancer Center, said that cancer communication needs to be engaging and relevant for the intended audience: "We need to know what they think and feel, how they behave, and once we have an understanding of those [things]
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The high costs of cancer care, including patients' cost-sharing requirements for their care, are associated with missed medical appointments and rationing of prescriptions, even among
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. Politi added that the high financial burden associated with cancer care extends beyond medical consequences; for example, patients with cancer who face high care costs report low quality of life and high levels of medical debt (Banegas et al., 2016; Kale and Carroll, 2016; Ramsey et al., 2013)
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PROCEDURES, POLICIES, AND PROGRAMS TO ASSESS AND ADDRESS HEALTH LITERACY NEEDS 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. Strategies for Health Care Organizations to Address Low Health Literacy Urmimala Sarkar, professor of medicine in the Division of General Internal Medicine at UCSF and associate director of the UCSF Center for V ulnerable Populations, described the vision for a health-literate health care organization: it is one where everyone -- members of the health care team, the patient, and family members -- has the same information, which enables seamless communication and helps patients and clinicians engage in shared decision making.
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Patient Navigation Programs Pratt-Chapman noted that 80 million Americans have trouble understanding and using health information, which can contribute to a lack of 20 The Suitability Assessment of Materials rates written materials across six domains: content, literacy demand, graphics, layout and type, learning stimulation and motivation, and cultural appropriateness. See SAM: Suitability Assessment of Materials for Evaluation of Health-Related Information for Adults at http://aspiruslibrary.org/literacy/SAM.pdf (accessed September 26, 2019)
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and that navigation services need to be sensitive to the contextual barriers to effective care delivery. She proposed that navigation services and providers be tailored to meet specific health objectives: for example, she said that community health workers would be most appropriate to deliver health promotion interventions, while nurse navigators would be most appropriate to provide symptom management during active cancer care.
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36 FIGURE 7 Patient navigation support for health literacy and patient–clinician communication across the cancer care continuum. NOTES: While education on palliative care, hospice care, and advanced care planning are included in this diagram as a component of end-of-life care, they are important across the continuum of cancer care (IOM, 2013b)
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Core elements of self-management support in cancer care include increasing confidence to manage symptoms and illness, supporting self-monitoring, facilitating knowledge and uptake of health behaviors, and supporting the development of skills for communicating with a care team.
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. Within the clinical setting, she suggested that the oncology community encourage family caregiving by identifying and supporting family caregivers and involving them as integral members of the care team throughout the continuum of cancer care.
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. Lastly, she suggested identifying and implementing models of care and payment that enable the health care team to support self-management across key transitions in the cancer care trajectory.
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STAKEHOLDER PERSPECTIVES AND PRIORITIES Many workshop participants representing diverse backgrounds and roles in cancer care discussed opportunities for action to improve cancer communication and to better support the health literacy needs of patients and their families. Potential Priorities in Research Meade noted that during her 25-year tenure at a cancer center, she has learned that the cancer community needs to improve its strategies for disseminating information about cancer research and care.
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She noted that patients are often confused by the complexity of oncology care and stressed the importance of conveying a coherent framework for understanding the rapidly evolving landscape of cancer care. Gwen Darien, executive vice president for patient advocacy and engagement at the National Patient Advocate Foundation, said that her experiences as a three-time cancer survivor and patient advocate have informed her perspectives on effective communication in cancer.
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She called for additional research to design and evaluate multilevel interventions to improve health literacy and patient–clinician communication. She noted that many participants spoke about the importance of building trust and strong partnerships between health care organizations and communities across the cancer care continuum.
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2007. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care.
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2018. Addressing health-related misinformation on social media.
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2018. Adopting clinical genomics: A systematic review of genomic literacy among physicians in cancer care.
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2016. Self-reported financial burden of cancer care and its effect on physical and mental health-related quality of life among US cancer survivors.
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2017. Cancer care in low-resource areas: Cancer treatment, palliative care, and survivorship care: Proceedings of a workshop.
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2019. Evaluating an intervention to improve communication between oncology clinicians and patients with life-limiting cancer: A cluster randomized clinical trial of the serious illness care program.
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2018. Continued challenges to the adoption and implementation of survivorship care plans.
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2019. Cancer prevention.
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