In an era of increasingly complex advances in oncology, how can health professionals help cancer patients with low health literacy better understand their diagnoses and treatment options? In an effort to improve cancer communication strategies with patients, the National Cancer Policy Forum (NCPF) of the National Academies of Sciences, Engineering, and Medicine (NAS) convened a meeting of invited speakers in Washington, D.C. The event was held in collaboration with the NAS Roundtable on Health Literacy. A written summary report of the meeting will follow.
At the meeting, the point was repeatedly made that skills in cancer communication can be taught and learned, and it is the responsibility of health professionals to make sure all their patients (including those with low health literacy) truly comprehend the information they are being given.
“This is a really big challenge; it's a very complex area,” said meeting co-chair and NCPF member Karen Basen-Engquist, PhD, MPH, the Annie Laurie Howard Research Distinguished Professor; Director for Energy Balance in Cancer Prevention & Survivorship; and Professor of Behavioral Science at the University of Texas MD Anderson Cancer Center.
“Low health literacy leads to poor health outcomes,” said meeting co-chair and Roundtable on Health Literacy member Michael Paasche Orlow, MD, MA, MPH, Professor of Medicine at Boston University School of Medicine. “We're talking about empowering people,” added Orlow, noting that a cancer patient with low health literacy is faced with making major decisions at a time of emotional and psychological turmoil and is therefore vulnerable. The problem has been well-defined; now, Orlow believes it is time to think about what can be done.
Identifying Health Literacy
Health literacy is generally defined as the degree to which individuals have the capacity to obtain, process, and understand the basic health information and services needed to make appropriate health decisions, said Marjorie Kagawa Singer, PhD, MA, MN, RN, FAAN, Research Professor/Professor Emeritus in the Department of Community Health Sciences and the Department of Asian American Studies at the UCLA Fielding School of Public Health. She said that only about 12 percent of adults have proficient health literacy, and 14 percent of adults (about 30 million people) have health literacy below the basic level.
The vast majority of adults also lack the skills needed to manage their disease, said Kagawa-Singer. “Where are we missing the boat? In essence, everywhere,” she said. She also noted that the U.S. is a pluralistic society with citizens of many cultural backgrounds. Navigating the U.S. health care system requires being aggressive, and many cultures do not embrace or foster that trait.
“System navigation is certainly a challenge,” said Shalewa Noel-Thomas, PhD, MPH, Bureau Chief for the Cancer and Chronic Disease Prevention Bureau at the Washington, D.C., Department of Health and former Director of the Office of Minority Health and Health Disparities at the Maryland Department of Health.
She noted that the term health literacy encompasses many aspects: health systems literacy, including understanding self-care, primary care, urgent care and emergency room care, and how to access services; insurance benefits literacy, including understanding co-pays, deductibles, prior authorization, and networks; and health behavior literacy. Most patients with low health literacy need intensive support, such as help from navigators and community health workers, she noted.
For patients with low health literacy, fear, poverty, fatalism, language barriers and lack of information, lack of insurance, and false beliefs play strong roles, said Elmer Huerta, MD, MPH, Director of the Cancer Preventorium, Washington Cancer Institute, MedStar Washington Hospital Center in Washington, D.C., the first Latino National President of the American Cancer Society (2007), and a senior medical contributor for CNN en Espanol.
“We need to concentrate on the person with the tumor,” not just on tumor biology, stressed Huerta, author of several books including Confronting Cancer. “Look patients in the eye and say, ‘I'm with you all the way.’” Huerta's radio and TV programs have reached Spanish-speaking populations in the U.S. and Latin America for more than 25 years, and his Cancer Preventorium, founded in 1994, has seen more than 37,000 people—mostly poor and uninsured Latinos—for prevention and early detection. Two-thirds of people seen at the Preventorium have less than a high-school education.
Huerta told Oncology Times that receiving health information from experts they trust is crucial to improving the comprehension level of people with low health literacy. He noted that he has built up a high level of trust with the Latino population over the decades that he has been communicating health information in Spanish, and that he hears from physicians in other countries who tell him their patients are educated because they listen to him.
Agreeing on the need to build trust with all patients, including those with low health literacy, was Roundtable on Health Literacy member Lisa K. Fitzpatrick, MD, MPH, MPA, founder of Grapevine Health, an organization that uses storytelling and videos to improve health literacy at the community level. She is also a professorial lecturer at the Milken Institute School of Public Health at George Washington University, a member of the Aspen Institute Global Leadership Network, and former Medical Director for the Medicaid program of Washington, D.C. She said neighborhood residents tell her, “If I can't understand you, I don't trust you.” “Value trust. It is a currency that matters. Show up and engage where people are,” she emphasized.
Complicating the need to improve patients' health literacy is that currently there are many competing demands for physicians' attention and they are overwhelmed, said Anthony Back, MD, Professor at the University of Washington School of Medicine, Division of Oncology; Co-Director of the Cambia Palliative Care Center of Excellence; and co-founder of VitalTalk, an organization that offers evidence-based training courses on communication about serious illness to empower clinicians and institutions.
“Communication is a learned skill; it's not something you're born with,” said Back. “Physicians are poor judges of their own communication skills. Why don't they try?”
They say they don't have time, the time isn't right, they are unsure what to say, and they have had no formal training in communication. “Skills training improves communication,” he stressed, adding, “Serious illness conversations improve outcomes. This is not any more about being a ‘nice doctor.’” What training in communication skills is about, he said, is empowering physicians and building more patient trust.
Back said that physicians need to be attuned to the patient who seems to understand what is being said but actually doesn't. “Many patients try to be polite...they are scared to death,” he noted.
Among the strategies for improving cancer health communication emerging from the NAS meeting were the following.
- Good communication skills have high value and should be fostered among health professionals, since they build trust with patients, which improves outcomes.
- Since clinicians bear the responsibility for making sure their patients understand what is being said, they should check on their patients' level of comprehension frequently.
- Cultural values must be taken into account and respected in efforts to improve health literacy. “When we start to listen to others' perspectives, it helps us communicate more effectively,” said Kagawa-Singer.
- Carefully designed patient navigation programs can help to guide and empower cancer patients with low health literacy.
- Helping the patient feel like part of a team improves health literacy; making eye contact, holding the patient's hand, sitting on the patient's level rather than standing; and making “we” statements such as “we're going to get you through this” all help to create a sense of teamwork.
- Cancer communication skills can be taught and learned; evidence-based training should be widely disseminated in institutions and payers should reward clinician participants in such training through reimbursement.
- Excellent, trained clinician communicators should be embedded in health systems, where their communication knowledge and skills can serve as examples and influence other clinicians.
- Improving health literacy includes helping patients to accept and live with uncertainty when there are no firm answers to their diagnosis or to treating their particular cancer. Patients need to know that science is not absolute.
- Use of all forms of health communication—including social media—should be encouraged to share accurate, evidence-based health information with consumers, especially those with low health literacy. “There's a captive audience on social media; use it,” Fitzpatrick noted. “Nothing is more strongly connected to ACS than information; our information is evidence-based and rock solid,” said Richard Wender, MD, Chief Cancer Control Officer at the American Cancer Society.
- Health professionals need to be much more proactive about discrediting false health information, especially false items that go viral on the Internet. An example would be misinformation that X causes cancer, when there is no evidence to support that allegation about X.
- Clinician conversations about end-of-life and palliative care should be usual and expected, and patients should be helped to understand what the term “palliative care” means, as opposed to “hospice care.” Patients appreciate these clinician-initiated discussions.
- Cancer survivorship care plans should be carefully explained so that patients with low health literacy truly understand what they are. Many Hispanics and Latinos express confusion and misinterpret such care plans, believing that they address how the family will carry on once the patient has died, said Frank J. Panedo, PhD, Associate Director for Cancer Survivorship and Translational Behavioral Sciences at the University of Miami, Miller School of Medicine and Sylvester Comprehensive Cancer Center; Sylvester Professor of Psychology and Medicine; and Co-Leader of the Cancer Control Research Program.
- For certain populations, including teenagers and young adults, special care should be taken to ensure understanding of medical terminology, as misunderstanding can be devastating. For example, in one case a patient misunderstood the word “sterile” in a consent document to mean “very clean,” said Gwendolyn P. Quinn, PhD, the Livia Wan MD Endowed Chair and Vice Chair of Research in Obstetrics and Gynecology and Professor in the Department of Population Health and the Center for Medical Ethics at NYU Langone Health School of Medicine. The patient did not understand that “sterile” actually meant infertile, which—if the misunderstanding had persisted—could have blocked the patient's choice to undergo fertility preservation measures.
As previously reported in Oncology Times, another NAS committee recently released a consensus report containing a sweeping new cancer control plan for the U.S. One of the recommendations of that committee is to launch and expand public, engagement, literacy, and outreach activities, starting with K-12 curricula and through technology platforms, to broaden the understanding of cancer prevention as an integral component of a healthy life course.
Peggy Eastman is a contributing writer.