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Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop (2016)

Chapter: 5 Communicating Risk and Uncertainty in the Clinical Setting

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Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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5

Communicating Risk and Uncertainty in the Clinical Setting

The workshop’s third panel session featured two presentations addressing the challenges of incorporating health literate methods in communicating risk and uncertainty with patients. Lori Erby, the associate program director for the Johns Hopkins University/National Human Genome Research Institute (NHGRI) 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.

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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CLINICAL COMMUNICATION TO INCREASE PATIENT UNDERSTANDING1

Verbal communication presents a challenge for individuals with limited health literacy, and conveying information related to multifactorial disease is particularly challenging, Erby said, adding that she first became interested in health literacy while completing her training as a genetic counselor. “When you think about the laundry list of elements that might go into a person’s precision medicine calculation, that will be a very complex communication context,” she said. Fortunately, she added, evidence already exists that supports specific communication interventions that could be important in a health literacy environment. At the same time, she questioned whether there should be a push for precision communication alongside precision medicine. “Is a one-size-fits-all list of techniques what we really want, or should we take the opportunity now to be doing more than that?” she asked.

Erby referred to Howard Koh’s model of organizational health literacy which relies on a universal precautions approach (Koh et al., 2013). She said that she would focus on the productive interactions component of that model which takes place between the health care team and the patient and family. She then discussed the challenge of communicating information verbally. Focus group studies of patients who had lower levels of education or who had difficulty managing their care found consistently that these people felt they could not understand what was being presented to them and that even if someone spoke directly to them, they felt the information was not accessible and that nobody was listening to them (Baker et al., 1996; Bennett et al., 2006). Even when interventions were put in place, such as teaching people orally in a class, these individuals had low levels of health knowledge (Baker et al., 1996; Schillinger et al., 2004; Williams et al., 1998).

Erby and her colleagues (2008) have found that individuals with lower levels of literacy do learn less from verbal exchanges. In one particular study, individuals listened to and watched a video of one of two genetic counseling sessions. One session was a standard prenatal genetic counseling session, and the other was a cancer genetic counseling session. In both settings, people with lower levels of health literacy had lower levels of knowledge at the end of the session. However, even those individuals with

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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.

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
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higher levels of health literacy scored no higher than 50 or 60 percent on a relatively easy test of their knowledge at the end of the exercise, Erby said.

Given these results, Erby and Johns Hopkins colleague Debra Roter began thinking about how they would look at the communication exchange in a way that would provide some insight about what might be difficult to grasp for a person who has limited health literacy skills. They decided to look at the elements of a verbal exchange that might be parallel to factors that others had studied in print materials, such as the use of jargon or generally complex language (Doak et al., 1996). 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) (see Figure 5-1). They also operationalized how to look at concept density, how information can be contextualized in a personalized versus generalized manner, and whether there are elements of the content itself that make comprehension difficult.

Using this framework, Erby and her colleagues are now looking at comprehension of genomic information in a group of individuals who have mild cognitive impairment and who may be at risk of developing Alzheimer’s disease. She explained that the communication used in this study has been

Image
FIGURE 5-1 Framework for understanding oral literacy.
SOURCES: Erby slide 8 (Roter et al., 2007).
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

thought through in terms of the concepts that will be disclosed in the clinical visit at which results will be disclosed. Moreover, the clinicians in this study, largely genetic counselors, are highly trained at working with this group of patients. Nonetheless, there has still been substantial variability and jargon use in the taped sessions. For example, one session included the use of the terms allele, MCI, prevalent, cognitive, revert, vascular, dementia, oxygenated, comorbidities, buccal, heterogeneous, hippocampus, and phenotyping.

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). The analogue patients had much higher satisfaction scores when the genetic counselor was more interactive. When the researchers measured the analogue patients’ knowledge after watching these taped session, they found that less literate analogue patients learned more when the sessions were interactive and the information was personalized, and they learned less when the sessions contained high language complexity. What Erby found most interesting was that the analogue patients who scored higher on the health literacy measure scored lower on knowledge when assigned to the interactive sessions. “This was completely counterintuitive to us,” said Erby, who added that it points to the need for precision communication tools. “We need to think about the characteristics of the people we are communicating with because they matter in terms of their different ways of learning,” she said.

Another study Erby mentioned, conducted by other investigators, looked at the differences in how health care providers and family members spoke when discussing informed consent (McCarthy et al., 2012). Perhaps not surprisingly, she said, the physicians in the study spoke with greater language complexity and with more words per turn than the patient’s family members.

As Erby had noted earlier, multifactorial disease is a particularly challenging context in which to communicate information is all areas of medicine, not just in the context of genetics. Not only is the information complex, but provider knowledge and comfort and patient understanding and values play essential roles in determining communication effectiveness. Erby said that much is known about how patients understand genetic information and about the difficulties they have in grasping genetic concepts. “We also know that how people apply genetic and other information to their decision making and the actions they take is going to be tied to their personal values,” Erby said. “If where we want to go with precision medicine is to

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

not just inform people of their risks but help them act upon those risks, we need to be thinking in our communication about what the information we give them fits within their own system of values.”

She added that the provider piece is important, too, particularly because physicians who are not classically trained as geneticists and who are not completely comfortable talking about genetics and genomics will, in an era of precision medicine, be increasingly called on to deliver such information. While acknowledging the importance of the work that Joseph McInerney discussed earlier about efforts to help educate health professions about genomics and make it easier for them to have fruitful discussions with their patients, Erby said that the discomfort non-geneticists feel with this subject matter is going to affect the communication process negatively.

There is evidence to support particular communication interventions—specifically, the universal precautions that the Agency for Healthcare Research and Quality has promulgated, said Erby. These include

  • Listen carefully and try not to interrupt patients when they are talking; pay attention and be responsive.
  • Use plain, nonmedical language.
  • Use the patient’s words.
  • Slow down; speak clearly and at a moderate pace.
  • Limit and repeat content; prioritize what needs to be discussed, limit information to three to five key points, and repeat those points.
  • Be specific and concrete.
  • Show simple graphics and use demonstrations.
  • Invite patient participation; encourage patients to ask questions and be involved.
  • Apply teach-back.

What does not exist to any extent, however, is research relating actual variation in communication practice to actual patient outcome, Erby said. Having that information will be essential, she said, for developing communication practices for these more complex scenarios in which people are trying to understand multiple risks and integrate those with their own lifestyles. She suggested that the Precision Medicine Initiative (PMI) Cohort, with its million individuals, presents an opportunity to study different communication contexts and how they can be improved. 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.

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

THE CHALLENGE OF LOW HEALTH LITERACY WHEN COMMUNICATING RISK IN THE CONTEXT OF PRECISION MEDICINE2

The promise of personalized medicine is that it will generate personalized therapies, but it will also generate hard-to-understand personalized risk and benefit information, Ancker said. She added that if the goal of the PMI is to broadly reflect the diversity of the U.S. population, then it is important to recognize that the PMI Cohort will include a significant number of people with low literacy (Kutner et al., 2006) and an even larger number of people with low numeracy (Ancker and Kaufman, 2007; Galesic and Garcia-Retamero, 2011). Low health literacy and numeracy are associated with other markers of disadvantaged status, she added, including poverty, lower educational attainment, belonging to a minority race or ethnicity, and a lack of insurance, and these in turn are often associated with various medical issues.

When thinking about risk, it is important to recognize that much of the information about risk will be quantitative information, Ancker said. As a result, the numeracy component of literacy will present a particular challenge that the PMI will need to address. People with low numeracy will, for example, have a hard time drawing meaning from the statement, “You have a 5 percent cancer risk.” It is known that people with low numeracy are likely to have an inflated perception of what that number means; it could feel more like a certainty to someone with low numeracy than to someone with high numeracy (Peters et al., 2012; Reyna et al., 2009). Research has also shown that when that framing is flipped from “You have a 5 percent chance of getting cancer” to “You have a 95 percent chance of not getting cancer,” people with low numeracy are more likely to be influenced by the change in frame than people with higher numeracy (McNeil et al., 1982; Peters et al., 2011).

Ancker remarked that when Appelbaum pointed out that about 5 percent of the people in the PMI Cohort would have a secondary genetic finding, he also automatically translated that, saying that 19 of 20 will not. “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

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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.

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

to perceive 5 out of 100 as a higher risk than 5 percent because it is more concrete and easier to visualize (Peters et al., 2011).

As an aside, Ancker said that statistics have been used as a rhetorical device historically to promote racist interpretations and racist policies (Parrott et al., 2005), and that a book called The Bell Curve has polluted the use of the term “bell curve” by arguing that African Americans were less intelligent than whites. As a result, Ancker said she tries to avoid using that term when teaching introductory biostatistics and introducing the concept of the normal distribution (Finucane et al., 2000). “All of this is to say that numbers are not necessarily perceived as objective pieces of truth as much as we hope as a scientific matter that they would be,” Ancker said.

The good news, she said, is that addressing these issues is not just about the patient. Certainly, Ancker said, the patient brings skills and knowledge to the table, but the person providing the information also brings a certain degree of communication skill—or lack of skill. 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). The larger context of a person’s social networks, as well as social media and traditional media, can also play a positive or negative role in access to, interpretation of, and application of health risk information, as can the health care delivery system.

Indeed, Ancker said, it is relevant for health care systems to consider whether they are devoting the necessary resources to making patient education materials that are appropriate for low-literacy audiences and to training their medical providers to communicate effectively. “Those decisions are being made at a larger level,” she said, “and that larger level is itself embedded in the entire society, which decides things such as whether people have access to health insurance.” The bottom line, she added, is that whether people have the ability to apply risk information to problems in their own lives in an effective way is a product of all of these factors, not just an individual’s skills.

From the perspective of the PMI and health care delivery, this observation means that there are a number of places to intervene beyond the patient, such as at the provider level or the information resource level. One project that Ancker has been involved with, in collaboration with the National Library of Medicine (NLM), developed a system-level intervention that improved access to information at the Institute for Family Health, a federally qualified health center network in New York City (Ancker et al., 2011). This project involved deploying an electronic patient portal so that patients could access their medical records. Initially, the health network had

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

an opt-in policy and an English-only portal, which led to significant racial disparities in using the system, which Ancker and her colleagues’ analysis identified. After the initial analysis, the health network switched to an opt-out policy—everyone now has a patient portal account unless specifically declining—and deployed a Spanish portal and created a mobile app. The result was that racial disparities disappeared almost entirely, Ancker said. “This is an example of a system-level effort to ensure access to information, and we are seeing the payoff in terms of who is using this information,” she noted.

In a related project, the same health network worked with NLM and Epic, the electronic health record vendor, to embed hyperlinks to low-literacy 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. “We are seeing these links being used disproportionately by the people we think need it most, which is exciting,” she said.

Information-level interventions can also move things in the right direction, she said, particularly when it comes to using different approaches to talking about risk. “We can use numbers, words, and various visualizations, including the type Suzanne Bakken described,” Ancker said. “The take-home message is that the choice of which to use has a great deal to do with what you are trying to tell people.” For example, if the purpose is to persuade someone to take action, it might be useful to present information in a way that magnifies the difference in risk before and after taking action. However, a different presentation might be useful if the purpose is simply to compare the before and after risk without seeking to influence the viewer’s judgment (see Figure 5-2). While one of these approaches is obviously more persuasive, it may not be ethical to persuade people one way or another if they are comparing two different treatments with two different benefits. Information can also be presented in a way that is intended to motivate a behavior, Ancker said, such as graphics designed to encourage smokers to quit developed by the American Cancer Society.

After displaying several other graphics that presented risk in different formats that had the goal of helping people draw meaning from numbers, Ancker noted that the choice of information format may also depend on the intended audience’s literacy and numeracy. For example, low-numeracy readers are more likely to believe that 1 in 2,000 is a smaller risk than 1 in 5,000 or that 140 out of 1000 is bigger than 14 out of 100. Survival curves (see Figure 5-3) are another way of presenting information that works better for experts, while icon arrays (see Figure 5-4) work better with patients than experts. She cautioned, though, that while innovation can be good, it is important to test new approaches because the results they produce may be counterproductive (Zikmund-Fisher et al., 2011).

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Image
FIGURE 5-2 The choice of information format depends on the communication purpose.
SOURCE: Ancker slide 13.
Image
FIGURE 5-3 Survival curves require expertise or training to interpret correctly.
SOURCE: Ancker slide 16.

“Medicine is not one size fits all,” Ancker said, “so should we be surprised that information is not one size fits all?” Her hope, she added, is that the next big step from the PMI is the precision communication initiative. “That is what we should be heading toward,” she said in closing.

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Image
FIGURE 5-4 Icon arrays are better accepted by patients than by experts.
SOURCE: Ancker slide 16.

REACTIONS TO THE PRESENTATIONS3

Davis’s first reaction was that neither presentation mentioned the importance of having a normal conversation in a normal tone of voice when it comes to building relationships and trust. She also noted that great clinicians follow the doctrine of “ask before tell,” that is, that one should ask a little about patients to find out where they are in their lives and what they want to know before presenting findings and risk. Davis said that the message to slow down when presenting complex information to patients

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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.

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

is important, as was the information about jargon. “We are swimming in jargon,” Davis said. “We do not even know when we use it unless somebody calls us on it, and usually the patient will not do that.” The need to personalize messages and the means of communicating them was another important lesson from the presentations, she said, as was the need to help primary care providers develop the skills to understand and communicate this new type of information—which they may not be comfortable with—to their patients. So, too, was the need to test graphics to make sure they are conveying the intended message. 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. So, too, can a person’s life experience. As an example, she cited a hypothetical woman who learns that she has a BRCA mutation that increases her risk of developing breast cancer. If everyone that woman knows who has had breast cancer has died, that will frame her belief about what her risk is going forward. Davis also said she appreciated Ancker’s comments on the need to help patients apply the information they receive to their specific situation.

With regard to making a person’s information available through a portal, Davis cautioned that receiving information without having a learned intermediary to put it in context can cause fear and anxiety. As an example, she recounted the story of a colleague who had a spot on her lung, went online to her portal, read the radiologist’s report, and became very scared. “She needed a learned intermediary, a physician she trusted, to help her make sense of what the radiologist said,” Davis said. In the same way, while having apps and graphics is good, patients will still need trusted relationships with people to help them put information in context.

Cathy Wicklund said she thought that precision communication was the key concept that came out of the two presentations. She cautioned, however, that the idea that information and risk estimates are important to people could be a product of the assumptions that researchers and clinicians, herself included, make based on their cultural views that information is important. She says that she sees this in her first year genetic counseling students who are so excited about all of the genetic information they have and believe their patients should be just as excited to hear it all. This gets to the importance of first listening to the patient and finding out what they want and then crafting a message that fulfills those wants.

Wicklund also noted the importance of understanding risk perception. “We have to be cognizant of all the things that account for people’s perception of what their risk is and how they make decisions,” she said. What makes for an informed decision and what that means is an interesting

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

question, said Wicklund, and a good decision for a particular individual might be one that has less regret or conflict or that boosts a particular individual’s confidence concerning what lies ahead. Deciphering what a given patient needs will require more than standardized approaches and scripts, Wicklund said; it will take a conscious effort on the part of clinicians and providers to develop the skills necessary to apply precision communication. It will also require health care systems to give clinicians the time to listen to their patients and use those learned skills.

As a final comment, Wicklund cautioned that the PMI needs to be careful about respecting autonomy, and she said that it should move away from a paternalistic view of “This is what the participants need to know.” However, it is also important to recognize that not everybody values autonomy in the same way and that, depending on the culture a person comes from, he or she may not want choices. This will be an important point to remember, she said, as the PMI works to assemble a diverse cohort.

Laurie Francis then commented that she appreciated the emphasis the two panelists gave to bidirectional communication and to the concept of variability in the style of communication in which both providers and patients engage. 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.

Erby said that she agreed completely that building a foundation for a relationship with the patient is critical and that focusing just on explaining genetics is not going to make everything else fall into place. “Risk is hard for people to capture,” she said, but she added that there is evidence that partnering with patients, making them feel that the conversation is starting from a place that is important to them and accounts for where they are in their lives, can be an important anchor point for a discussion about risk. Ancker referred to the extensive work that has been done on patient portals and other consumer-facing technologies which shows that one predictor of success is the ability to get support when needed. Having access to support is a demonstration, she said, that the system cares about the individual. One predictor of success for a patient portal, Ancker said, is whether patients know that they can use it to communicate directly with their providers to engage in bidirectional conversations that strengthen the patient–provider relationship. Erby added that she and her colleagues believe that well-designed technology should be able to improve communication and strengthen the patient–provider relationship but that there

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

needs to be a conscious effort to ensure that the technology does in fact accomplish that task.

Wicklund remarked that focusing on long-term outcomes—rather than on the short-term outcome of what needs to be conveyed in a specific patient–provider encounter—might enable the health care team to build the relationships and trust that will provide insights into a patient’s life that point to ways to improve the patient’s ability to retain information and act on it. Too often, Wicklund said, clinicians focus on the short-term outcome of covering everything on a check list. Davis agreed that too often clinicians are giving diagnoses in a vacuum of not knowing much about a patient’s lifestyle and concerns. As an example, she said that when a clinician tells a patient he or she has diabetes, the one-sided conversation is usually about changing the patient’s lifestyle and checking blood sugar levels. In the meantime, the patient is worrying about dealing with the insurance company and paying for insulin supplies. Wicklund also reiterated Ancker’s comment that doctors like numbers better than patients do, and so a patient may not understand the benefit of maintaining a certain blood sugar level.

In addition to the importance of understanding where a patient is coming from before deciding what to say to that patient, Ancker said it is also incumbent on the clinician to state explicitly what he or she is trying to achieve. “What I find is that clinicians are often fuzzy about whether they are trying to provide information or whether they are trying to persuade,” Ancker said. She explained that, in her experience, clinicians often say they want to provide information when what they really mean is they want a patient to take a specific action. 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.

Wicklund said she agreed completely with Ancker on that point and suggested that the conversation should include setting an agenda and pointing out gaps between what the clinician and patient want and to not be apologetic about doing so. She also said that genetic counselors have changed their approach so as to be nondirective as often as possible, though there will be times when persuasion and giving advice and recommendation is appropriate, in which case it is important to be transparent about that being the goal.

DISCUSSION

Among the conversations that clinicians have trouble with, Ruth Parker said, are those about value, affordability, and cost, and she questioned if the field of genetic counseling has learned any lessons about affordability and

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

how to operationalize conversations about affordability in the context of the market-driven, multi-billion-dollar health care enterprise. Erby replied that because insurance has not historically reimbursed completely the costs for expensive genetic tests, genetic counselors have been addressing affordability for a long time, and it is an uncomfortable discussion. “As professionals, we do not want the thing that drives the patient’s decision when they are feeling vulnerable [to be] the cost,” she said. While there has been little research on this challenge, Erby said, she has learned from talking to her colleagues about how they have approached this subject, and how she has approached it is to be upfront with patients and tell them that this is an uncomfortable subject and that affordability can be a factor in the choices they make. Then, once that is on the table, she tries to work with patients to plan alternative approaches that they may be able to afford.

Wicklund said that this is a topic she and her colleagues have discussed in the context of the PMI. “It is one thing to enroll people in this cohort, but if we are going to give results back to them, we also have to think critically about access to subsequent services,” she said. “If people cannot have access to follow-up services with appropriate screening or appropriate health care, then we are creating even more disparity.” She said she believes that there is an ethical obligation to follow through with those enrolled in the PMI Cohort and become involved in their care, their access to services, and them getting the support they need in the community. Concerning how to have these conversations, Wicklund said she struggles with the right way to approach them. She said that she and her colleagues often debate whether to offer some course of action to a patient knowing the patient cannot afford it. “I do not think we have good models, theories, or research to demonstrate what would be the best way to go,” Wicklund said.

Ancker added that, from her perspective, the United States has made an arbitrary distinction between what is covered by health insurance and what is not. Other societies, she said, have drawn that line in other places. She noted that cost is only external from the clinician’s point of view, while it is completely internal from the perspective of the patient. “As a patient, it is part of your experience of health, medicine, and illness,” she said. “Cost is one of the components of decision making because of the way we have set up our system.” Wicklund said she thought that was an important point.

Communicating risk and uncertainty has long been a problem in health care, Bernard Rosof said, and this is particularly true now that health care has become more team-based care. 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. Researchers, she said, need to work with patients and providers to learn

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

how to get information into practice and then use that information to teach the health care team members. Rosof then commented that how to communicate risk and uncertainty is not something that is currently taught in medical school, but perhaps it should be. Francis added that thinking about genetic risk in the context of lives of people who may be at risk of homelessness or hunger could serve as a good reminder to the community about relative importance.

Davis wondered if part of the problem is that clinicians and researchers are more certain about things than is warranted. “We have a hard time saying ‘I do not know, and I do not know what is going to happen,’” she said. Erby said that there are times when it may not serve the patient well for the clinician to convey his or her uncertainty. “We need to be clever about how we train our clinicians to make those assessments,” she said. As an example from her own clinical experience, she said that if something had a risk of 1 in 300, she would inform the patient of the risk and explain that she was not certain how it would play out in that patient’s life, and she would help the patient deal with the uncertainty; on the other hand, if the risk was 1 in 10,000, she would not tell the patient about the risk.

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. However, she said, there may be other situations where understanding the magnitude of the difference in risk between two actions may be important, and in that situation it may make sense to discuss the actual numbers and put them in context through a discussion with the patient.

Stacey Rosen from the Hofstra Northwell School of Medicine at Hofstra University made two points. First, she reminded the workshop that students learn in medical school that the first vital sign is the one that matters. Keeping this idea in mind, she said, would allow both patient and clinician to frame how much information and also the type of information each patient gets. Her second point was that cost-related issues are going to be important in how these discussions are framed. “I think bringing cost into these decisions is going to become part of how we have to train clinicians because it has become part of the decision-making process,” Rosen said. Parker added that one of the building blocks for a health-literate health care organization is being able to communicate clearly what is covered by a patient’s insurance, which is another way to look at affordability. Both Rosen and Davis commented that most clinicians have no idea what various procedures cost or what a patient’s insurance will cover.

Steven Rush from UnitedHealth Group asked how precision medicine is going to deal with the portion of the communication process that stops when a patient gets bad news. As an example, he cited the well-known

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×

phenomenon that happens when a patient receives a diagnosis of cancer: the next thing he or she hears is nothing. A day or two later, reality sets in, and the patient then has many questions for the provider. Erby replied that she was glad Rush raised that point because it gets to the notion of conveying the right information to the right person in the right way at the right time. Timing is critical, she said, and the clinician needs to think in advance about where the patient will be at the moment he or she gets the information and what will be most helpful then and going forward. She noted the tendency is for clinicians to want to convey all of the information they have at once, while research shows that most people can only take in two or three new ideas at a time.

Rush then asked where psychological readiness fits in the algorithm being built for precision medicine. Rosof responded that there is a model for dealing with this that involves the health care team helping the patient move from crisis care to health-literate care. When the patient leaves a physician after receiving certain diagnoses, there should be a team that then sits with the patient for a time to address any concerns and questions the patient might have. Christopher Dezii from Bristol-Myers Squibb added he was struck by the gaps that exist in communicating risk and uncertainty.

Wilma Alvarado-Little commented that much of what she has heard is embodied in the first course that students take when pursing a master of social work degree—meet patients where they are and then take them to where you hope it will be helpful to them. 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. Wicklund said that part of the training for clinicians has to be to not rely on one mode of communication and to understand that words are a very small percent of what is actually conveyed in communication. This will be a deliberative process, she said, and she added that the PMI explicitly wants to enroll individuals with cognitive impairments and other disabilities, so information will have to be made accessible for all individuals by using a battery of approaches. Betsy Humphreys from NLM added that technology, particularly technology developed for telemedicine and telehealth, may be able to help in this regard. For example, she said, she knows a psychiatrist and mental health counselor who knows American Sign Language and uses telemedicine to provide services to a much broader group of patients than would be possible if it was necessary to meet them in person.

Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 45
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 46
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 47
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 48
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 49
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 50
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 51
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 52
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 53
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 54
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 55
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 56
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 57
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 58
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 59
Suggested Citation:"5 Communicating Risk and Uncertainty in the Clinical Setting." National Academies of Sciences, Engineering, and Medicine. 2016. Relevance of Health Literacy to Precision Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/23592.
×
Page 60
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On January 20, 2015, President Obama announced the Precision Medicine Initiative (PMI) in his State of the Union address. The PMI, by developing new approaches for detecting, measuring, and analyzing a wide range of biomedical information including molecular, genomic, cellular, clinical, behavioral, physiological, and environmental parameters, is intended to enable a new era of medicine in which researchers, providers, and patients work together to develop individualized care. Part of this effort included the creation of a national, large-scale research participant group, or cohort. The PMI Cohort Program is aimed at extending precision medicine to many diseases, including both rare and common diseases such as diabetes, heart disease, Alzheimer’s disease, obesity, and mental illnesses such as depression, bipolar disorder, and schizophrenia, by building a national research cohort of 1 million or more U.S. participants.

An important challenge to assembling the PMI Cohort will be to reach individuals who are socioeconomically disadvantaged. Individuals who are socioeconomically disadvantaged have lower health literacy; often belong to racial, ethnic, and minority communities; and are often less likely to participate in research studies and biorepositories. To explore possible strategies and messaging designs, the Roundtable on Health Literacy formed an ad hoc committee charged with planning and conducting a 1-day public workshop on the intersection of health literacy and precision medicine. The workshop participants discussed a variety of topics including an overview of precision medicine and its potential, the relevance of health literacy to the success of precision medicine efforts, and perspectives and understanding of different groups, such as health care providers, consumers, and insurers. This publication summarizes the presentations and discussions from the workshop.

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