The final panel session of the workshop featured a moderated discussion in which the panelists, each representing a different sector of the health care enterprise, responded to specific questions developed by the workshop planning committee and posed by moderator Laura Noonan, director of the Center for Advancing Pediatric Excellence at Levine Children’s Hospital. The panelists were Christopher Trudeau, assistant professor in the University of Arkansas for Medical Sciences’ Center for Health Literacy, representing the legal sector; Lori Hall, director of health literacy at Eli Lilly and Company (Lilly), providing a pharmaceutical industry perspective; Thomas Bauer, senior director of patient and family education at Johns Hopkins Health Centers, providing insights from the health care system perspective; Laurie Francis, executive director of Partnership Health Center, representing the federally qualified health center sector; and Lawrence Smith, dean of the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, providing insights from the education and training sector. An open discussion followed the moderated panel discussion.
The first question Noonan posed to the panel was to ask them to think about how to increase the company leadership’s awareness of health
1 This section is based on the moderated discussion among Laura Noonan, director of the Center for Advancing Pediatric Excellence, Levine Children’s Hospital; Christopher Trudeau, assistant professor, University of Arkansas for Medical Sciences’ Center for Health Literacy;
literacy and its benefits. Smith said that if he was speaking with the chief executive officer of Northwell Health, he would say that chronic disease cannot be managed without health literacy. “We are now in the chronic disease management business full-time,” said Smith, who noted that at least half of his organization’s efforts focus on prevention. “You cannot do prevention without health literacy because nobody will come for preventive interventions. You will not have a patient base that thinks you treat them respectfully without health literacy and interventions to assure that. I think I could make a very strong business case on a moral, ethical, and medical quality basis.”
Bauer said he agreed with Smith, and that his argument has always been based on the quality and satisfaction aspects of the Quadruple Aim. “What has worked more effectively for me is one-on-one meetings with key leaders throughout the organization and finding those that also will support the message,” said Bauer. The purpose of those meetings, he explained, is to have advocates in the executive suite who engage in the critical conversations that take place throughout the organization and to which he is not a participant. From his experience in two organizations, he learned the importance of first making the case in small demonstrations, celebrating and sharing those victories, and then allowing them to grow organically. “When that happens, the word spreads through the organization and that organic growth becomes fire and fire then leads to the spread,” said Bauer.
From her perspective as the executive director of a federally qualified health center (FQHC), Laurie Francis said she feels certain that “health literacy will only find purchase if we build it into quality, cost, access, and equity. For those of us in health centers, it is absolutely about value and value-based care, not just cost.” In her opinion, the field needs to do more with metrics to better understand why a health literacy intervention will improve control of hypertension. One action her organization in Montana is doing is disaggregating populations to look just at those who are currently in control of their chronic disease and better understand that population using a social determinants screening tool. Francis also recommended an article on organizational transformation (Halfon et al., 2014) that her former health center in Oregon used to guide its efforts and to help her understand the language that would resonate with leadership.
Trudeau, referring to Smith’s comment about the importance of understanding the critical issues for executives, noted that compliance and risk
Lori Hall, director of health literacy, Eli Lilly and Company; Thomas Bauer, senior director of patient and family education, Johns Hopkins Health Centers; Laurie Francis, executive director, Partnership Health Center; and Lawrence Smith, dean, Donald and Barbara Zucker School of Medicine, Hofstra/Northwell, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
are major concerns among health system executives. Explanation of benefits, informed consent, and patient care plans all have a compliance aspect to them, and so from his perspective, tying health literacy to legal concerns could make a compelling case in the executive suite. He considers health literacy to be both sword and shield. The shield is the compelling evidence laid out in the commissioned paper showing that health literate communication must be the standard of care. “We are starting to get information on what type of interventions work and what interventions may not work so well. That is the shield. Those organizations that adopt those principles now are going over and above the standard of care. And those that do not, they are subject to the sword,” said Trudeau. In his opinion, combining return on investment and compliance makes a compelling argument to move any type of organization toward a patient-centered approach and having activated members.
Considering the question through a pharmaceutical industry lens, Hall said that while a pharmaceutical company is full of people who care deeply about patients, there is no one-size-fits-all message to deliver across an entire organization. She reminded the room full of health literacy ambassadors that they each had their moment when they realized how important health literacy is, and the challenge is to find the message that will make the light bulb go on for people with different roles and agendas in an organization as large and diverse as a pharmaceutical company. What appeals to a scientist in the organization will be different from what interests someone in the marketing department. “By customizing the message and breaking through the noise, we allow people to have the ‘Aha!’ moment first before they are ready to hear and listen to supporting data,” said Hall. She has had a great deal of success in taking this approach and acknowledged that it takes work to customize a message for each new group in the organization. In her mind, helping people in the organization feel they can become heroes in their own story is the best path forward. “You have to do your homework and have real insight into the one or two or three things that they are working on and your message should start with ‘I understand that you are focused on these three things in the next quarter. Here is how health literacy can help you get there.’”
In a follow-up question, Noonan asked the panelists how the health literacy community can get invited to speak at the meetings that executives, legal staff, or pharmaceutical company representatives attend, knowing that those people are not likely to attend a health literacy conference. Smith said that at his medical school, the definition of a good doctor is someone who creates a positive effect in the patients they treat. “Once you decide that that is what a great doctor is, then health literacy and communication skills and empathy and all those other things become tools for effectiveness, not nice things to do to a patient,” said Smith.
One thing Bauer did when he was first starting a health literacy effort in his organization was to send emails on a regular basis to key decision makers relaying the results of studies he would hear about at health literacy conferences. Eventually, those emails got through. “It was a powerful way to get that message to a group of individuals who are too busy to go to a conference on health literacy alone,” said Bauer. Francis suggested that titling meetings or conferences, “the role of health literacy in improving health equity,” would draw a wider audience, particularly from FQHCs, as would “the role of health literacy in containing costs.”
Trudeau said that he had to break down two sets of walls in the health care system and in the legal world. He noted that in 2016, he sent a proposal to the Michigan Bar Association’s health law section for a conference session on health literacy and why it matters to lawyers. Within hours, the conference organizer called him and said she had been practicing health law for 15 years and had never considered the relationship between health literacy and her field. Since then, he has written articles for the Michigan Bar Journal and similar publications. “We have to start targeting these new markets that we do not often think of because we have to make the people who do not hear our message or who are not predisposed to our message have that ‘Aha!’ moment, then they can start making the connections themselves rather than having us do it for them,” said Trudeau.
When asked if she was seeing health literacy sessions at pharmaceutical meetings, Hall said not as much as required, but health literacy is appearing as a topic at conferences on medication adherence and patient experience. She noted that in preparing for this workshop, she used her participation as an opportunity to get in front of the senior executives at Lilly and get their input. The answers, she said, were compelling. One leader acknowledged that they have so many competing priorities that they do not even know what they do not know, which in this case means they may not even know that the field of health literacy exists. Another executive told her that the field needs to make more noise and engage in more promotion with quick, repeatable messages that break through the existing noise using creativity, humor, and alternative media. A third executive, who is engaged with health literacy as a critical issue and is one of her supporters at the company, suggested that the field organize a health literacy forum for the pharmaceutical industry that would exist in the noncompetitive space to share ideas and data and stimulate research.
Noonan, commenting on advertising that tells people who have taken a particular drug to call a legal team pursuing a class-action claim, asked Trudeau if the day was coming when a commercial would tell people who received a particular piece of patient education material that they could not understand or act on to call a law office. “You raise an interesting point, and I think that is the next frontier,” said Trudeau. “Now that we know
what we know regarding health literacy and what patients understand and do not understand, that can guide our future development of the regulations.” He predicted, however, that this would take time because laws generally take time to change.
Before moving on to the second question, Noonan challenged the panelists to advocate for a session or workshop on health literacy at all of the professional conferences they attend. “Maybe that will also raise awareness,” she said. She then posed the second question to the panel: “What are the selling points or data that will move leadership in your specific industry to take action?”
Bauer says he goes about tackling this problem differently. When he is with a group of people from the health care industry, he asks them if they are the health care experts in their family, and almost universally, everyone raises their hand. Then he asks if anyone has taken a call from a friend or family member and started shaking their heads because what they are hearing is not true. Somebody in the group usually smiles at that point and he asks them to share a story. “The reason this is so powerful is that health literacy is about everyone,” said Bauer. “It is not about a group of individuals that you could label. It affects everyone.” These stories, he said, become powerful because they open the door to head and heart, and then it is possible to share statistics and talk about readmission rates, patient satisfaction, and reduced emergency department visit.
Francis responded with an admission. “I am still not a convert to health literacy as a stand-alone entity,” she said. “I always use the term patient-centered communication. Health literacy is a critical piece of that, but as a pull-out, it does not work for me.” For the population she serves through an FQHC, she is more concerned about literacy in general than health literacy and more concerned about how people can become owners of their own lives and not as much about keeping people with congestive heart failure out of the hospital. “I think about power and equity and access to the information that patients want to improve their lives, which does have a health literacy piece, but I want it to be the information they want, not the information we want them to have,” said Francis. For her, health literacy, patient-centered communication, motivational interviewing, and trauma-informed care together make a difference in creating vibrant organizations that serve people well, and that translates into improved quality and contained costs.
Trudeau noted that a survey conducted several years ago by ProAssurance Corp. found that 4 of the top 10 reasons for malpractice suits had to do with weak patient education or a breakdown in communication between provider and patient. In addition, one study found that the average 250-bed hospital spends between $300,000 and $1 million annually defending medical malpractice claims. “This is not for paying the claims. This is for paying the
lawyers,” said Trudeau. A rough back-of-the-envelope calculation suggests that U.S. hospitals spend between $173 million and $624 million annually on legal fees associated with poor communication. “We need more focus on this,” said Trudeau, suggesting it could be a powerful selling point to health system executives.
Hall, who describes health literacy as a problem hiding in plain sight, liked leveraging the idea that implementing health literacy practices would allow health systems to stretch their dollars further. For pharmaceutical industry executives, a message that would resonate with them would be that health literacy could improve clinical trial awareness, increase enrollment of diverse populations in clinical trials, reduce adverse events, and improve medication adherence. At a more basic level, Hall has found that she needs to be an excellent communicator with her colleagues and company leaders and make sure she pays attention to the details, such as how she writes and formats her emails to ensure the recipient can quickly scan, process, and act upon a given request. “Make it as easy as possible for them to say ‘Yes!’” she said. Often, creating an effective, repeatable message that connects health literacy to something important to the executive suite works well. “There is a lot of strategy and psychology around what is successful,” she said.
Bauer added that the executive suite is not homogenous, and chief medical and chief nursing officers are going to need a different message than the chief financial officer. “Understanding the pain points and addressing a message to those pain points is the key,” said Bauer. He recalled that early in his career, he was spreading the message to his organization’s physicians and felt that while the message was getting across, he was not engaging or activating them. Then he started talking to the providers and was able to identify their pain point, which was that despite all their work in the office, they were having to spend additional time answering emails and call backs from patients and families seeking clarification of what they had heard in the office. “When I started to address those things and how health literacy might be a solution to that pain point, things started to change,” said Bauer. He noted one study done at the Cleveland Clinic showing that the teach-back method reduces the clinical encounter by 2 minutes, in addition to preventing another call. After getting that type of information to physicians and having them experience their own successes, the message spread quickly.
Working in Queens, New York, where the residents speak more than 100 different languages and live largely in tight-knit communities, Smith explained that delivering culturally sensitive care can win an entire community, not just the patients coming in for care. From a business model, Northwell Health is now recognizing the power of becoming the preferred provider for the Korean community, the Sikh community, the Russian--
Jewish community, and the hundreds of others spread throughout Queens. “The payoff is tremendous, both in terms of loyalty and business,” said Smith.
Taking off from that comment, Noonan asked the panel if there is a business case for becoming the destination for medical care based on patient experience rather than on offering robotic surgery or other technology. Smith said absolutely, and his experience as a physician was that his practice increased during his 25 years as a primary care doctor because someone walked out of his office satisfied. “When I got the next-door neighbor and the uncles and aunts and cousins of the patient I saw that day, that is how my practice grew,” he said. Francis agreed as well, although she extended the idea to the entire health care team needing to be good at listening and communicating to their patients. This is particularly true at an FQHC, where the clients are often not heard in many aspects of their lives.
Noonan then posed the final question: “What do people who lead this work in your organizations need to do to advance adoption of this work if it is not already a highly reliable process in your organization or your industry?” Francis replied that building leadership support is critical, as is designing materials around both the internal customer and external customers, patients, and staff members. Also needed are metrics that reflect the incorporation of changes in health literacy at the care team level and with respect to quality of care.
Bauer joked that he is often asked how big his team is, and his answer is, “You are looking at it.” In fact, though, he has an army working for him, a group of people who do a little bit across the organization, such as patient education teams at each of his health care system’s hospitals and in each of its home health entities. He has people on the payer side and community physician side at Johns Hopkins Health System who devote a little of their time to this work because it has become their passion as a result of leadership support and understanding that it is a vital component of delivering good care. In fact, he said, leadership support has enabled him to create a small amount of capacity for many people to spread the word about health literacy, which is why he would reiterate what others have said about the importance of cultivating leadership support as a first step.
In addition, Bauer said he would build strong partnerships with the people who manage the organization’s EHR. Integrating health literacy work into the EHR so it is easy for patients and the health care team to access is essential to the work he is doing, said Bauer. Similarly, he would establish a partnership with the quality assurance teams to create opportunities to improve patient participation and satisfaction. He noted that in an environment where finances are tight, he does not expect to get more money or more people to drive his programs. “What becomes most incumbent upon me is to share that message with passion, patience, and persistence to
continue that focus so in a time when there are so many conflicting priorities, this remains one of them,” said Bauer.
Smith seconded the importance of building leadership support and recruiting an army. His favorite tactic for recruiting that army is to collect enough data to convince everyone there is a real problem. “Once everyone believes we have a problem that has to be fixed, all of a sudden people get activated,” said Smith. “It is very hard to ram a solution down someone’s throat when they think you are trying to solve a non-issue.” Given the pervasiveness of the problem, he said it should not be hard to find supporting data in any organization.
One takeaway Hall recognized in trying to activate the leaders in her company is that there is much to borrow from the principles of health literacy. This starts, she said, with understanding what leaders need, meeting them where they are, and customizing the message according to what is important to them, not what is important to her as the health literacy director. It goes a long way, she said, when leaders feel understood regarding the pressures they are under and the competing priorities they deal with every day.
From a legal perspective, Trudeau would emphasize some of the ways in which health literacy can advance the mission of risk compliance managers and the legal staff. For the legal staff, it is important to get the message across that health literacy and the law are not mutually exclusive. “I always talk about law and health literacy,” said Trudeau. “It is a win-win, not one or the other.” When Trudeau speaks to lawyers and risk compliance managers, he mentions the regulations that support patient understanding, including the caregiver acts that AARP has been advancing in some states. Delaware’s regulation, for example, requires notice and training to the caregiver in ways that they can understand, he explained. Another area he emphasizes is how health literacy relates to organizational strategic priorities and regulations about patient engagement, patient-centered care, and patient understanding. At academic medical centers, regulations on informed consent are a big issue with a tie-in to health literacy. The common rule, for example, focuses on patient understanding of informed consent, and Trudeau believes it provides a legal construct for arguing about the importance of health literacy.
All of those activities, said Trudeau, are just the first step. The second step is training legal staff members and risk compliance managers on how to weave health literacy principles into what they do. Picking up on Trudeau’s last comment about training, Noonan equated the current situation for health literacy to that which existed earlier when quality improvement was introduced to health care and tens of thousands of physicians had no idea what to do because they had not been trained. As the dean of a medical school, she asked the panelists to address the challenge of how she is going to train medical students and faculty in the principles of health literacy.
Smith said that he would start with medical students because they are “infinitely easier to train than faculty.” Medical education at his institution uses a problem-based learning curriculum, and communication skills and patient exposure are part of that curriculum from the first day of school. “This is a very different, radically student-centered curriculum,” said Smith. From day one, students engage in elaborate exercises involving complex cases for which the students learn both the biologic science that underpins the case and the social determinants of illness, health literacy issues, and compliance with medication challenges. “We throw other things into those cases, so they understand that effectiveness is never just knowing the [material]. It is also turning your knowledge of the [material] into effective action,” said Smith. What the medical school has learned is that segregating the nonbiologic aspects into separate exercises relegated them to the “touchy-feely stuff.” “But when we incorporate them into the solution to the patient’s problem, suddenly they became as important as understanding the biochemistry and physiology of the patient,” Smith said.
Smith acknowledged that while this approach works well with students, he does not think it would work at all with the attending staff. “I am not sure what would, except pointing out to them that when they are misunderstood with what they think are crystal clear patient conversations, bad things happen to the patient,” he said.
Trudeau recounted a story about an emergency department physician whose patient satisfaction levels were very low. At the time, he was experimenting with the idea of using Ask Me 3 as the framework to present information and teach-back to verify knowledge transfer. When Trudeau went back to talk to this physician a month later, the physician said his experience was humbling because he had just learned that his patients had never understood him completely. As a result, that physician began using those methods as his own quality assurance mechanism. Trudeau added that in that emergency department, patient satisfaction scores rose 40 percent and the staff became one of the most powerful proponents for his work. He noted that his current institution includes exposure to health literacy, social determinants of health, and health equity in the interprofessional training that all health professionals must take. Francis said that in her work at an FQHC, she disaggregates the population and does subpopulation management as a way of creating health equity and bringing health literacy principles into play.
Hall said that health literacy is still in its infancy in her organization, and her challenge is to continue building awareness and break through the noise. “People have to buy in to the problem before they are ready to think about solutions,” she said. One approach she has been doing is collecting myths and misconceptions about health literacy that exist in her company and is creating an on-demand eLearning experience around myth
busters. She is using this approach to address the misconception that health literacy applies only to the work of a few groups in the company, or that this is a “government-manufactured health crisis,” or something that only applies to certain vulnerable populations—not the rest of us. “I am hoping that this myth busters approach will challenge people’s assumptions about what this really is and who it applies to,” said Hall.
Noonan concluded the panel discussion with her reflections. Her first was wondering how to pay for educating the entire medical profession about how to use health literacy principles. Just training all of the nurses at her institution on teach-back and Ask Me 3 cost $4 million. “How do we get somebody to write the check?” she asked. “How do we get somebody to say this is a line item just like the electric bill?” In her opinion, this is the cost of doing business well for patients. Her second comment concerned the concept of coproduction, which means involving the patient in the design process, whether it is of a letter, a bill, or a process. To her, that gets to the heart of a patient-centered approach.
Alicia Fernandez from the University of California, San Francisco, remarked that she works with language barriers and the law has been a wonderful sword and something of a shield, with most of the big advances resulting from lawsuits brought by patients. From her understanding, language barrier work is an affirmative case through the Civil Rights Act, but to her knowledge, there is no equivalent to Title VI for the right to understand, or at least attempt to understand, one’s physician. In her mind, this diminishes the sword, and she asked Trudeau if there have been discussions about creating an affirmative standard to move this field forward. Trudeau agreed that the sword is dull regarding health literacy and said data are needed to promote the case for an affirmative standard. There is the Plain Language Act of 2010, he noted, but it lacks teeth and is more of a guideline for agencies, not for hospitals. One avenue for sharpening the sword might be through Joint Commission standards.
Terry Davis from the Louisiana State University Health Sciences Center commented that, like Francis, she does not use the term “health literacy,” believing it to be jargon just like “health activation,” “health engagement,” and “patient engagement.” “I am not sure this is a term we want to ride on from now on,” she said. Francis said that all this discussion is about improved health outcomes, maybe safety and equity, and about patient-centered, team-based care, where there is a natural role for health literacy to meet patients around their priorities. Bernard Rosof from the Quality HealthCare Advisory Group and Donald and Barbara Zucker School of Medicine at Hofstra/Northwell pushed back on the idea that health literacy
and the like are jargon. “But team-based care, patient-centered care, family and patient engagement and health literacy have all focused on the patient at the center of our activity. If you lose that perspective that the patient is the center of our activities, then you have lost what we are trying to accomplish,” said Rosof. “I would not like to lose the phrase ‘health literacy’ in what we are talking about going forward. That seems to me to be a step backward.”
Sochan Laltoo, a public health instructor from Trinidad and Tobago, offered his opinion: health literacy is based more on solutions rather than on problems, and to him, he sees it as a proactive approach to try to prevent health crises from arising and that it should be applied at the population level as part of disease prevention. “We should not have to deal with patients,” he said. “We should be focusing on the population.” Trudeau agreed with this idea and said that if the nation were designing a health care system from the ground up from a policy perspective, health literacy would be a population-based approach. He commended Jennifer Dillaha and her colleagues in Arkansas for taking that approach and wondered if that approach would benefit everyone.
Jay Duhig from AbbVie Inc. asked the panel for ideas on how to integrate health literacy into mHealth, digital health, and other technological developments that are making rapid inroads into the health care system. “To me, it is frightening that we would import the same problems that we have now when we shift to tools that could potentially address them,” said Duhig. Bauer replied that he did a survey in 2016 with more than 1,000 health care professionals in his organization. “What we found when you start talking of integration of health literacy into the electronic world is that our staff did not know what educational materials were approved to use and what was not approved, how to find approved materials, and which documents are the right ones to use,” said Bauer. For example, a search of his organization’s EHR for diabetes turns up 236 documents. “Which is the right one to give to patients?” he asked.
One lesson Bauer learned was that it was harder to work in the EHR than it is to go to Google and pull information, which is not the ideal situation, and as a result, he has been working to make it easier to work in the EHR rather than going to Google for information. Today, when a health care professional activates a care plan, the EHR deploys a teaching plan with teaching points using health literate materials that support the patient. The next step will be to make it easier for patients to access that information themselves through the patient portal.
One concern going forward, he said, is the proliferation of health-related apps for smart phones. “Are they good? How vetted are they? How are they maintained?” he asked. His hope is to not end up where every patient has a different app with no single source of vetted information. As
a model for what he hopes will develop, Bauer noted the learning process that bariatric surgery patients go through before their surgery. There is a 6-month minimum educational period preceding surgery, and there are apps built to support the patient that allow them to report to and interact with their medical team.
Regarding mHealth, Trudeau is worried that the technologies being developed are following the same path as EHRs, which is that they are being developed with the goal of saving chief financial officers money and not for the benefit of patients. In his opinion, the developers of these technologies need awareness training and should be encouraged to design their technologies from the ground up rather than to be compatible with the leading EHR products. It may be necessary, he said, to incentivize that type of development through regulations or grants.
Stanton Hudson from the University of Missouri noted that the discussion has not included the patient as a member of the health care team, and he wondered if any of the panelists had success partnering with patients to strengthen the case for health literacy. Bauer replied that he had just had his second meeting with his patient and family advisory council dedicated to health literacy. “One thing they will tell you is to involve them at the beginning,” said Bauer. His plan going forward is to have this group review the strategic plan he developed to make sure the members’ perspective is included in the plan to ensure that efforts going forward are driven by a true partnership with the members of his health care organization.
Francis wondered if the field should start asking what the role of health literacy is in health care and helping individuals improve their health and well-being, listening to the answers, and then identifying natural insertion points for health literacy. She noted that she uses a technique known as empathic inquiry. The doctors and nurses found that once they started asking different questions that helped them better understand their patients’ lives and how they could help, they started getting completely different answers. Smith added that his institution has experienced what he calls sentinel events in which well-informed patients who understood their illnesses warned their health care teams that something bad was going on, and instead of being listened to, they were labeled as aggressive, disruptive patients. “If we are going to educate and empower our patients, we have a lot of work to do on the culture of the care team to have care teams actually listen to the patient,” said Smith.