Linda Harris opened the workshop’s final discussion session and said that one thing she would like to hear more about when explaining precision medicine to the public is details about using genomic information to inform lifestyle, physical activity, and diet—and not only in terms of actions to take, but also with regard to dosage. She was referring to the possibility that given a certain genetic background, too much exercise may have unintended consequences. Suzanne Bakken commented that she would continue to mull over the difference between accurate and complete, something that she had not considered before. She said she would also think more about the history of tailored health communication and how that differs from what today is being called precision communication. Ruth Parker remarked that she sees a great deal of promise in marrying health literacy to precision medicine.
Cindy Brach said she began the day thinking that risk communication is hard and that after the day’s discussion, she is even more worried about meeting the challenge of communicating risk because doing so is not objective but rather normative. She said that she worries that the information people receive from genomic sequencing could lead to an increase in unnecessary health care as people learn they are at risk for some condition and feel the need to do something about it without understanding the context or size of that risk. “I think the discussion has raised a number of health literacy questions about responsible discovery,” she said. “When is it appropriate to expose people to all of this genetic information, and how can we help people use it to improve their lives, as opposed to increasing their risk of unnecessary procedures?”
Michael Villaire said that he is excited that precision medicine is the next step in the evolution of medical care, but he is concerned about the density of information that precision medicine will generate, given that people already have a difficult time understanding treatment options and choosing among them. While he is heartened about the awareness that health literacy will be important, he said he worries that when it gets down to level of the face-to-face clinical encounter, the infusion of health literacy will not be enough to explain this information in a way that benefits patients. He also expressed concerned that people will misuse the information they receive to suit their particular situation, and as an example he referred back to the lifestyle changes that Francis Collins made after learning he was at risk of developing type 2 diabetes. Someone learning that he or she is at low risk of developing type 2 diabetes may, for example, respond to that information by adopting a diet that is unhealthy for other reasons. Health literacy, he predicted, will play an important role in minimizing that risk.
Earnestine Willis referred to Michael Wolf’s remarks on the intersection of the Precision Medicine Initative (PMI) and health literacy and reiterated the importance and challenge of building trust and understanding among populations and subpopulations that have been historically disadvantaged and underserved by the health care system. The importance of Easter’s emphasis on getting boots on the ground now cannot be overstated, Willis said, nor can the issue of affordability and the cost to health care providers of providing health-literate information. “Precision medicine is going to change how we practice,” Willis said.
Marin Allen commented that she sees a nexus around the topic of risk communication and the associated challenges, and she said she hoped the roundtable would think more about this subject. She also commended the link between bi-directionality and skills that was brought up over the course of the day and of the need to engage practitioners to improve their communication skills.
Andrew Pleasant from the Canyon Ranch Institute said that he was an early participant in the Cornell Genomics Initiative, which added an ethical, legal, and social issue dimension to the Human Genome Project. This led to the realization that it is important to consider who is not at the table when having discussions about genomics and precision medicine, and in the case of this workshop, Pleasant pointed out, the public did not have a representative present, nor did the mass media or the religious community. Pleasant also said that the field of public communication of science and technology predates that of health literacy, and he mentioned two books—Between Understanding and Trust, which came out in 2000 and concerns the public communication of science and technology, and Health Literacy: A Prescription to End Confusion, which the Institute of Medicine released in 2004—as an illustration of the different approaches these two fields take.
“Health literacy is mired in a deficit model,” Pleasant said. “We heard that today. We heard a little about the engagement or participation model, less about the contextual model, and nothing about what the public communication field would call the lay expertise model that values the expertise the public brings to the process.” He said he wondered if precision medicine, by valuing different sources of expertise, will change health literacy more than health literacy influences precision medicine. He also said that to be successful, health literacy will need to be better at identifying which approaches work for which people.
Stacey Rosen said that in her opinion, precision medicine promises to be disruptive on many levels even at this early stage of data collection. She said she is encouraged, though, by the early inclusion of ethics, cost containment, and health literacy in the PMI because these important considerations are often not discussed until after scientific discovery is made. Laurie Francis echoed Rosen’s excitement about how health literacy is being discussed early and the fact that it is bringing to the table the idea that the patient is the expert in communication, not the research community. The day’s discussions, she said, repeatedly stressed the importance of making the PMI patient-centered and of understanding the context of people’s lives when communicating with them. Catina O’Leary added that the emphasis on community, diversity, and developing multiple frameworks was also encouraging, although she reiterated Pleasant’s comments about missing input from the public at the workshop.
O’Leary then said that she was a little dismayed about the idea that 1 million people may not be a big enough cohort to realize the full potential of the PMI. As an operations person, she said, she is confident that it will be possible to recruit, engage, motivate, and retain a cohort of this size, but also that it will be hard to do so, particularly when it comes to the last 10 percent of the cohort. This last 10 percent is important to retain, O’Leary said, because its members are different from those in the first 90 percent. It will also be challenging to layer health literacy on top of this effort, and figuring out how the health literacy community can support the PMI. One comment that worried her, she said, was that the train may have already left the station even though the PMI is but 1 week old. Finally, she highlighted the need to consider how mental health and substance abuse will complicate health-literate communications.
James Duhig from AbbVie Inc. said he thought that the suggestion of examining how the meteorology community explains risk and probability was a good one, and he noted how venues such as reality television can make complex information relatable and actionable to the general public. He had a question, though, about how the roundtable can convene stakeholders to share best communication practices with others. He suggested that that the health literacy field could share best practices by demonstrat-
ing them on smaller groups within the context of the PMI, and he questioned whether the roundtable could focus efforts relating to collaboration on communication practices that could lead to the optimization of the overall PMI effort.
Christopher Dezii said he appreciated how the challenge of creating and sustaining the PMI Cohort kept coming back to developing and maintaining strong, effective avenues of communication. Steven Rush voiced the same appreciation, and he then asked how what the PMI hopes to achieve is different from shared decision making and to what extent shared decision making was taking place today. He also wondered what motivates people to engage in shared decision making. One topic that he said he would like to hear more about was the readiness to accept information and use it to make changes, and he said he thought the roundtable could bring together stakeholders to discuss how health care can be redesigned to help people process information better. Addressing these issues, he said, could produce a business case to support health literacy. Kim Parson from Humana also commented on the importance of communication but added that communication has to become conversation. “It is going to be important to put as much emphasis on how we have those conversations with patients and families and learn what their expectations are for sharing and understanding the findings being shared with them as we are putting on the communication process,” Parson said.
Wilma Alvarado-Little agreed that there needs to be an emphasis on encouraging discussion, not just communication, and she said that that will require partnerships, particularly with communities where there is a level of mistrust because of past misdeeds by the research community. She voiced concern over the possible costs associated with following up on genomic information and over the potential impact on various populations, and she noted the challenges of conducting conversations in languages other than English and with patients from cultural and spiritual backgrounds that may react in different ways to this type of information. She applauded the work being done in Spanish while noting that there are other large communities in the United States that use languages other than English or Spanish.
Terri Ann Parnell from Health Literacy Partners agreed with Alvarado-Little’s emphasis on addressing language needs and with Pleasant’s idea that the PMI could provide opportunities to advance and change the field of health literacy. In her opinion, she said, the PMI challenges the health literacy community to be more agile in its thinking and to consider working with new types of partners outside of the health care enterprise that have done a better job engaging, empowering, and educating their constituents. Parnell also said she was concerned about the information overload that the PMI may place on patients, adding that it will be important to keep that concern in the forefront as the field moves forward.
Lori Hall from Eli Lilly and Company said she was struck by the disruptive nature of the PMI, which she said can be both good and bad. The PMI will deeply affect public trust and the nature of patients’ relationships with both clinicians and the health care industry as a whole, she said, and it will require unprecedented collaboration among all stakeholders to make sure that the relationships that result are good ones. Hall added that one stakeholder not heard from at the workshop was the pharmaceutical industry, and she said that she wondered what role her industry can play in furthering the goals of the PMI. She suggested that the pharmaceutical industry might be able to help with recruitment, given that finding participants in clinical trials is a challenge the industry deals with regularly. She also said she wondered if one approach to recruitment and retention might be to honor participants as clinical research heroes. “I think there is something to say for helping participants feel they are not just a cog in a wheel or a commodity in a process, and instead that they are the expert on themselves and they will help in ways that exceed expectations,” Hall said.
Terry Davis said that she had four take-away messages from the workshop. One was the important role that health literacy will play in recruiting and retaining vulnerable populations. A second message was the importance of building relationships and trust in the community. A third was the need to hire and train people to act as navigators and coaches to help individuals be full participants in this effort. The final message was that it is possible with the right approach to create informative graphics that more easily communicate risk to the public.
Betsy Humphries agreed with the comments that precision medicine could have as big an impact on health literacy as health literacy will have on precision medicine. One message that she found interesting, she said, was that any deterministic view of health and health care is a mirage—that the science of genetics and the interaction of genetics with environment and lifestyle creates probabilities for outcomes. Many people, however, do not want to hear that message, she said. They want definitive answers when they see their health care providers. Addressing this disconnect will be a challenge, she said, but one she believes will drive the health literacy community to learn more about how to communicate effectively and honestly with the public.
Another voice missing from the day’s conversations was that of patient advocates, said Laurie Myers, who pointed out that there was not a single speaker or moderator who did not have an advanced degree. She said that it will important to consider from a patient’s perspective what genetic information will mean to that patient’s family and how children and adolescents will have different opinions than adults or a health care providers about what information they want to know. Other concerns that participants are likely to have will include whether they can have a caregiver present
during the conversation and how they will pay for follow-up visits once they receive the free information from the PMI. Privacy is a very important issue to patients, as are the fears that there will be discrimination, that their health insurance premiums will increase, or that they will be fired based on the results from genomic sequencing. Given all of the publicity about credit card breaches, it should not be surprising that privacy is on the minds of the public, Myers said.
Myers noted that patients are also likely to want to know what will happen if they change their minds about participating in the future or about what kind of information they want to know. They may even want to know if they or anyone else will benefit financially should something be discovered from their biological samples and where and how those samples are stored. Myers highlighted the challenge of helping patients understand the meaning of their data, given how little is actually known today about the link between specific mutations and health outcomes. Participants may also want to know what would happen if the PMI ceases to be funded after the next election cycle.
Jennifer Dillaha said she was worried about the impact of the huge data load from the PMI on primary care clinics that are already struggling with electronic health records and health literacy. “Is this going to completely overwhelm the primary care system in my state so that it cannot provide the necessary patient support?” asked Dillaha, who works in Arkansas. “What needs to be in place so that all of the people who receive this information or participate in the PMI can be appropriately supported in a health-literate way where they receive their health care day in and day out?” Answering these questions, she said, will require focusing on the patient, not the data or the disease. Her concern, she said, is that if that is not the focus and if these data cannot be used in a way that improves the quality of care, the PMI has the potential to do many things badly. Having said that, based on the day’s presentations and discussions, she said she has good reasons to hope that the end result will be positive.
Bernard Rosof, providing the final comments of the day, reiterated the importance of understanding the audience for whatever information there is to be passed between participants and providers. That will be a challenge, he said, because of the scope of the PMI and the multifaceted audiences that will exist within the PMI Cohort. Rosof then raised the issue of how the PMI is going to measure how successfully it is communicating with participants, which will first require determining what the PMI wants the learner to know, to value, and do with the information received. Rosof suggested that one reason progress has been slow in meeting the goals spelled out in the Institute of Medicine report Crossing the Quality Chasm was that the community attempting to change the system did not understand its audience terribly well and did not know how to measure success.