In keeping with roundtable tradition, the workshop concluded with its members offering their reflections on the day’s presentations and discussions. To start the conversation, Bernard Rosof recounted a talk given the day before by the National Academy of Medicine (NAM) president Victor Dzau, who was discussing what the NAM might look like over the next decade. Dzau noted that the 1999 Institute of Medicine report To Err Is Human played a seminal role in launching the quality improvement movement in health care and suggested that perhaps a new slogan going forward would be, “To care is human.” Connecting that back to this workshop, Rosof said that this slogan encapsulates one of the main points he heard repeatedly during the day’s discussions and that it is exactly what the health literacy community is trying to accomplish.
Michael Wolf said that what struck him was how important assessment is when it comes to learning about patients, what their experience dealing with the health care system has been, and where they are in terms of knowledge and understanding, whether regarding health literacy in general or mental or behavioral health issues specifically. “I think before we get to payment models and restructuring our health care system, we have to start to understand the full extent of the barriers that patients face as they engage in health care,” he said.
Michael Paasche-Orlow said that without thinking about the dualism he discussed in the previous panel session and about why doctors and not patients are at the core of how health care is organized, there will be no chance of doing better by patients with mental and behavioral health issues. It is imperative that health systems commit to treating the whole patient
and that they challenge the basic assumption that there is the mind and then the rest of the body.
Steven Rush from the UnitedHealth Group said that what stood out for him was the extension of the November 2017 roundtable workshop that discussed the business case for health literacy. By contrast, he said, the discussions at this workshop focused on why health literacy is so important for a group of individuals who are perceiving, processing, and communicating information because of a behavioral or mental health issue. “As I am preparing to do some training for clinicians,” he said, “today’s presentations gave me ammunition to talk about the dollars and cents, but also the why.”
Ellen Markman said the day’s discussions reminded her of a workshop held several years ago on the child care workforce, where many of the recommendations called for collaboration among those with professional expertise in various areas as well as with parents and teachers. Markman said that, to her, the emphasis on collaboration brought out in this workshop speaks the importance of teams working together for the benefit of the patient rather than different pockets of expertise not communicating with one another. She said she was also impressed by the amount of attention paid to the issues of stigma and bias, including implicit bias, and to the importance of dealing with those to help this population of individuals and reduce the barriers to care.
Lawrence Smith said that the day’s discussions concerning communication helped him realize that health literacy is about bringing patients to the point where they can participate actively in their care. He noted that asking patients to work harder on their own behalf requires an unbelievable trust in the system and that without communication, trust will never develop. “Without trust, no one, even if they understand their illness, will ever go along with the things you are just telling them to do,” Smith said. Behavioral health issues, he noted, add a new layer of complexity to determining effective strategies that can improve communication and build trust.
Vanessa Simonds from Montana State University also spoke of the importance of trust and respect, particularly when working with communities where the community members look different than the people that are providing care and also with those who are experiencing the stigma associated with behavioral health or substance use disorders. She said she was struck by the comment that it takes a special kind of provider to develop trust in that environment.
Cindy Brach commented that universal precautions are not about treating everyone the same but about treating everyone as if they are at risk. “It seems to me that universal precautions and real health literacy connect well with behavioral health,” she said. Part of the point of health literacy, she said, is to make it easier for patients to navigate settings and systems, which requires integration. Her organization, AHRQ, offers an academy
for integrating behavioral health and primary care. “There are resources, and I urge everyone to take a look,” she said, noting that AHRQ also offers modules on how to work with people who have limited English proficiency and to create psychological safety for that person. Brach also noted that the patient and caregiver’s interests are not always aligned, which adds a layer of complexity to any communications involving patient and caregiver.
She then raised the issue of open EHR notes that are available to patients, saying that there is an opportunity to use open notes as another health literacy strategy to help change the language providers use with their patients. Finally, she emphasized the importance of Brandon Pate’s presentation that showed cost savings associated with collaborative care. She suggested that the roundtable should consider commissioning a paper that marshals evidence on the cost benefits of collaborative care.
Gayle Mathe commented on the need to understand what it is that keeps clinicians from various fields from using what they have learned about communicating better with their patients. “Why do we know what we should do but cannot implement it as individual clinicians?” she asked. “That is a problem that needs to get solved.” Mathe also pointed to Pate’s presentation as an example of how the health care system can reach out to patients they might never otherwise touch and wondered what else the system could do along those lines.
Johanna Martinez said she was reminded by the day’s discussions about the power of words and how even simple words can create bad or good outcomes, fear or trust, access or barrier. Examples include the difference between “committing suicide” versus “dying by suicide,” or “substance abuse” versus “substance use disorder.” “Sometimes the very pragmatic, small, simple things can lead to better outcomes for most people,” she said.
Winston Wong from Kaiser Permanente commented that the criminal justice system has become a de facto mental health delivery system. This is particularly troubling, he said, when looking at the intersection of these issues as they apply to equity and communities of color and tribal communities. “We are reproducing an intergenerational aspect of how mental health is criminalized in our society, and we are never going to make progress until we address the issues that overlap between health literacy, access to care, and racism and class issues,” Wong said.
On a more optimistic note, Wong said there is precedent for looking at how health literacy can address issue of care for those with mental and behavioral health issues—specifically from the work done on HIV and AIDS prevention. Progress was made there when HIV/AIDS was identified as a global issue and not just an American one, which meant that prevention efforts had to consider different cultures and languages. Also helping was the recognition that HIV/AIDS was a public health issue and not just one affecting individual clinicians and patients. The issue of helping care
for those with mental and behavioral health disorders has to be elevated to the level of neighborhood, community, and even states and regions when trying to demystify and de-stigmatize mental health. The third lesson from the work on HIV/AIDS prevention, Wong said, is that it was not done specifically around clinical leaders, but rather around leaders from the community. He pointed out that HIV/AIDS is a complex disease, both medically and socially, and yet the public is starting to understand and de-stigmatize what it means to be at risk for HIV infection and to think about prevention and treatment.
Terry Davis said she was struck by how much the health care system needs to improve in order to make it easier and more useful for patients and to support them when the system discharges them to their homes. “We sometimes forget that they are not well when we discharge them, and they need help,” she said. Davis added that all patients want to feel that their doctor cares about them and their situation and that at her medical school, students are embracing this idea and valuing humanism more than she has seen in the past. “There is real value for humanism in medicine,” she said.
Michael McKee from the University of Michigan Medical School said he wanted to emphasize the need for a collaborative environment, which, he said, should include patient navigators and community brokers as well as social workers, nurses, and interpreters. “We need to get the community members to be part of this,” he said. He agreed that diversifying the workforce is important but said there will still be obvious differences in education and income, for example, between members of the care team and many patients, which is why it is imperative to have community members be part of the system that provides care for these individuals.
McKee also remarked on his growing concern that the health care system is becoming even more fragmented and said that it is important to protect some of the gains that have already been made. He said he worries about the growth of concierge models of care that will provide for longer visits, more personalized medicine, and multiple communication channels since this development will likely only benefit those who already have resources. “We need to be on guard and figure out ways we can protect those who do not have those resources,” he said. His final comment was on the need for medical schools to do a better job teaching how to communicate and how to engage certain types of patients. “We put a lot of work on looking at very rare conditions when the bigger, more prevalent conditions are not well addressed,” McKee said.
Laurie Myers from Merck Sharp & Dohme Corp. said she started the day aware that depression can be a barrier to medication adherence but that the day’s discussions highlighted for her the fact that medication is an important part of managing both mental health and the general health of
people with behavioral health challenges. “For me, in my role,” she said, “it really reinforces the need for pharma companies to continue to think about simplified dosing and clear information about medicine and disease to reduce the cognitive burden.” She then remarked that education can be a tool to address the stigma associated with mental health. As an example, she recounted how her eighth grade daughter had to do a family tree that included health conditions, and it served as a means of starting a dialogue with her child.
Christopher Dezii said he heard two important points. The first was that stigma is a significant barrier to health literacy and to the deconstruction of dualisms. The second was that cognitive screening is part of personalized medicine. Gemirald Daus said he had been thinking about how to get effective interventions out into the world, particularly with regard to collaborating with nonprofit organizations, community-based organizations, and community health workers.
Earnestine Willis said she wanted to reinforce the idea that interpersonal, bidirectional communication is foundational to building trust and empathy, particularly for those populations for which there is work needed to achieve health equity. She also commented on the importance of collaborative care, including approaches for addressing the social determinants of health if the ultimate goal is to address health disparities. Willis’s final comment was the need to look at school shootings as a symptom of mental health issues.
Jennifer Dillaha said that when she was trained in infectious diseases, she learned that the key factor predicting medication adherence was whether the patient perceived that the people in the clinic cared about him or her. “It occurs to me that using health-literate practices is a good vehicle for communicating that respect,” she said. Dillaha also commented on the fact that the health care system still tolerates poor communication skills and other behaviors toward patients that should never have been tolerated. Currently, the only way to address this problem is through a quality improvement process, she said, but it may be necessary to have stronger disciplinary actions in response to poor quality scores.
Olayinka Shiyanbola said that the comments about the need to support and advocate for patients, caregivers, and providers resonated with her. “It is not just building the trust of the patient with the clinician,” she said, “but also building the trust of the family member or caregiver with the clinician and provide support and resources to them.” She also said that she did not hear much discussion about access issues, and she wondered whether the people who are turning to social media for information and support have access to the health care system, and she wondered further how to bring those individuals into the health care system. Rosof noted that social media is an important venue for the autism community.
Catina O’Leary remarked how much she appreciated starting the day with people who are living the experiences that served as the focus of the day’s discussions and that she also appreciated that they stayed for the entire workshop. “I think it holds us accountable to communities,” she said. “It changes the tone of the conversation to know that people are in the room and they are asking questions. I think it is a big deal when the roundtable spends the time to get people who can speak their truth bravely and then also stay here to be part of the conversation.” She commented that health literacy should not be a silo and that the way to make that a reality is to push the field into these new spaces. She suggested, for example, thinking about interventions beyond teach-back and plain language, such as motivational interviewing, that have components that health literacy could embrace. “Just because we did not create it does not mean we cannot use it,” she said.
Annlouise Assaf from Pfizer Inc. said that when thinking about the intersection of behavioral and mental health and health literacy, it is important to make sure to fully understand with extensive inputs from both patients and the community exactly what the needs and wants of the people are before jumping in and telling them what they want and how to fix things. “I think when you are talking about people who have issues with health literacy or who have issues with mental health, that is even more important because it might take a while for them to get across to you what they need,” she said, “but they do know what they want and what they need. It is important that we involve them in that process.” It is also important, she said as the final comment for the day, to make sure that all stakeholders understand what is meant by the words “mental health” and “behavioral health” and that they are using them in the same way when talking about possible solutions.