Relevance of Health Literacy to Precision Medicine Proceedings of a Workshop (2016) / Chapter Skim
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5 Communicating Risk and Uncertainty in the Clinical Setting
5 Communicating Risk and Uncertainty in the Clinical Setting
Pages 45-60
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From page 45... ...
and Genetic Counseling Training Program and an adjunct assistant professor in the Department of Health, Behavior, and Society at the Johns Hopkins Bloomberg School of Public Health, talked about effective communication in the clinical setting, and Jessica Ancker, an associate professor of health care policy and research at Weill Cornell Medical College, discussed the challenges of communicating risk to low-health-literacy populations. Terry Davis, a professor of medicine and pediatrics at the Louisiana State University Health Sciences Center, and Cathy Wicklund, the director of the Graduate School in Genetic Counseling and an associate professor in the Department of Obstetrics and Gynecology at Northwestern University, then gave their reactions to the two presentations, and Laurie Francis, the senior director of clinic operations and quality at the Oregon Primary Care Association, moderated an open discussion among the workshop participants.
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From page 46... ...
However, even those individuals with 1 This section is based on the presentation by Lori Erby, the associate program director for the Johns Hopkins University/National Human Genome Research Institute and Genetic Counseling Training Program and an adjunct assistant professor in the Department of Health, Behavior, and Society at the Johns Hopkins Bloomberg School of Public Health, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
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From page 47... ...
. The elements that she and Roter examined included jargon, complex language uses such as complex sentences and multisyllabic word use, and dialog pacing and interactivity, which involve presenting information in chunks and in a way that engages the listener (Roter et al., 2007)
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From page 48... ...
In a study in which volunteers were asked to watch a randomized selection of 96 simulated genetic counseling sessions involving an average of 30 different genetic counselors and to imagine themselves as the client in each session, Erby and her collaborators found that the level of understanding of these "analogue patients" was strongly affected by things that increased the complexity of the language, whether the use of jargon or the use of generally complex language (Roter et al., 2007, 2009)
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From page 49... ...
She noted in closing that none of the competencies expected of genetic counselors explicitly mentions health literacy even though those competencies involve counseling and education specifically and, more generally, facilitating informed decision making that matches clients' needs.
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From page 50... ...
"I thought that was interesting because even for this highly numerate room, you switched the framing back and forth so that people could hear it both ways." She also noted that he switched the format of the message, going from a percentage to a frequency format, and she explained that people with low numeracy are more influenced by this kind of formatting difference. They are less likely, she said, to recognize that 5 percent is the same thing as 5 out of 100, and there is even evidence that they are more likely 2 This section is based on the presentation by Jessica Ancker, an associate professor of health care policy and research at Weill Cornell Medical College, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
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From page 51... ...
In addition, the resources used to augment and assist in the communication process can also play a positive or negative role in communicating risk, depending on whether or not those information resources are designed in a way that bridges the gap between readers of different levels of skill (Ancker and Kaufman, 2007; Paasche-Orlow and Wolf, 2007; Rudd, 2010)
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From page 52... ...
In a related project, the same health network worked with NLM and Epic, the electronic health record vendor, to embed hyperlinks to lowliteracy educational materials in the clients' electronic health records. Ancker's analysis has found that these links are being used more often by the demographic groups that historically have had higher rates of low literacy.
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From page 53... ...
FIGURE 5-3 Survival curves require expertise or training to interpret correctly. SOURCE: Ancker slide 16.
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From page 54... ...
Davis said that the message to slow down when presenting complex information to patients 3 This section is based on comments by Terry Davis, professor of medicine and pediatrics at the Louisiana State University Health Sciences Center, and Cathy Wicklund, director of the Graduate School in Genetic Counseling and associate professor in the Department of Obstetrics and Gynecology at Northwestern University, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
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From page 55... ...
As Davis noted, a picture is worth a thousand words, but which thousand is what is important. She also said that she thought Ancker's emphasis on framing risk was important, and she added that verbal cues, facial expressions, tone of voice, and body language can also act as framing cues that affect how a patient perceives risk.
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From page 56... ...
She said that she was also struck with the need for the health literacy community to examine how to explain the intersection between genetics, lifestyle, environment, and behavior. "It feels as though we concentrate on how to explain genetics to people, but it does not feel we spend time inviting conversations around lifestyle and understanding a person's environment and experiences," she said, asking the panelists for their thoughts on how clinicians can learn to listen better and invite participation in a way that builds trust and engages patients.
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From page 57... ...
While the medical profession considers it ethical to try to persuade people to take actions that will benefit their health, there are cases -- such as choosing a particular medical treatment -- where it may not be ethical. "If we do not acknowledge that we have goals as well, I think we may fail ethically," she said.
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From page 58... ...
Rosof asked the panelists if they had any thoughts on what the health care team needs to learn about communicating risk and uncertainty. Ancker said that researchers are actually the people who need to learn, and what they need to learn is how to productively employ all of the information that precision medicine will generate.
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From page 59... ...
Ancker said that this comes back to identifying goals. The goal may be to raise someone's awareness of being in a danger zone, which is why she thought Bakken's stoplight graphic was an effective choice of conveying blood pressure information.
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From page 60... ...
She asked if the panelists could provide any guidance on how to work with a visually impaired patient who cannot pick up on non-verbal cues or see informative graphics or else with a hearing-impaired patient. Ancker responded that from an informatics point of view, one notable exception to the meaningful use provision that patients should have access to their medical records concerns people with either visual or auditory limitations.
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