As is customary at a Roundtable on Health Literacy workshop, the final session was devoted to roundtable members’ reflections on the day’s presentations and discussions. Catina O’Leary from Health Literacy Media began the session by commenting that much of the discussion during the day focused on patients and the care team, with only a slight nod to communities and health literacy at the population level. The field needs to think bigger and stop doing the same things that it has been doing for the past 20 years, she said. In the same vein, she agreed with comments made by Partnership Federally Qualified Health Center’s Laurie Francis about the terms the field uses. This struck her as highly relevant, given that health literacy now sits under a bigger tent with more stakeholders and requires different solutions and strategies that are more inclusive. She then referred to observations made by the Hofstra/Northwell Zucker School of Medicine’s dean, Lawrence Smith, about changing the culture of the care team; O’Leary wondered how health care can create a culture that changes how it thinks about power and privilege and decision making. She also voiced the need to stop blaming the patient and for the health care system to adopt the attitude that health literacy is not its fault, but it is now the system’s problem to solve from the perspective of the patient.
Kim Parson from Humana focused on improvements she heard that the health care profession needs to make time for, including eliminating silos within and between organizations, eliminating the check box mentality of an after-visit summary, making health records portable, developing health literacy metrics that measure health outcomes, and designing and co-creating policies, processes, and communications with its patients, caregivers, payers,
and policy makers. Parson said she heard the need for focusing on teaching wellness and how to engage with the health industry from an early age, to accept responsibility for mistakes and be held accountable for making things right, to encourage patients to take an advocate or caregiver to all physician visits to record instructions and ensure the patient gets all questions answered, and to rethink using the term “health literacy.” Also needed is more effort incorporating health literacy into the solutions for a patient’s problems, busting myths, and most importantly, finding time to listen.
Steven Rush from the UnitedHealth Group appreciated that the day’s discussions moved out of the patient–clinician environment to hear what pharmaceutical companies, health insurers, and others are talking about regarding health literacy. He agreed that there may need to be new terms to talk about health literacy with certain target audiences, and that it is important to ask how a health literate communication solution will address a specific problem. Rush also appreciated the idea that the National Committee for Quality Assurance is talking about creating communications in clear, understandable, everyday language.
One message that Christopher Dezii from Bristol-Myers Squibb heard was the need to recognize in building the case for health literacy that it inextricably links to many other concepts. For example, he works on disparity issues, which at their core contain a health literacy issue. Referring to the hurricanes that struck the United States and its territories in the Caribbean, he said it would be important and reasonable to declare the situation with health disparities a national disaster, given what those events revealed. That, he said, might mobilize action.
Michael Villaire from the Institute for Healthcare Advancement commended the authors of the commissioned paper for assembling the evidence supporting the case for health literacy and the ensuing discussions on how to develop convincing arguments using that evidence to sway the people who still think of health literacy as fluff, as a nice but not essential thing to do. He then challenged everyone attending the workshop who provided good examples of what they are doing in their organizations to “identify a peer organization and ask them to step up to the plate and do the very same thing so that we can start to spread this out,” said Villaire. “We need to get outside of this room, have action, and start to have a domino effect out there.” He voiced concern about the challenge of disseminating the good programs that the authors found in the grey literature, rather than in the peer-reviewed literature, and encouraged those who develop those programs to talk about them with their peers.
Lori Hall from Eli Lilly and Company said an important message she heard is that empathy cannot be outsourced, automated, digitized, or operationalized. Empathy, she said, emphasizes the power of human touch and a kind, caring approach to change everything for a patient, including the
trajectory to meaningful conversation and an engaged, empowered patient and family. She also encouraged the roundtable to include the patient voice in its work going forward.
Cindy Brach from AHRQ heard that there is no single case for health literacy, and that the argument depends on the audience. She was struck by the importance of creating arguments based on solving problems that are important to an organization’s leadership and suggested enlarging that idea to issues that are important to an organization’s priorities. “Is it patient safety? Is it patient engagement? Is it becoming a patient-centered medical home? Health literacy fits into all of those,” said Brach. “Let the health literacy case be a chameleon.” At the same time, buy-in from leadership does not always result in change because change ultimately results from the bottom up, from getting clinicians and other staff who have contact with patients to act. “We need to grab teachable moments as they occur, and we need to make health literacy work for the people who have to do the transformation work and make the case at that level, too,” she added.
She noted that she heard two strategies for getting people to the “Aha!” moment. The first was to get staff to try some health literacy strategies and realize their patients have not been understanding them. “Just try that teach-back method with your last patient of the day or do a brown-bag medication review and see whether there are any medication errors going on,” Brach suggested. The second strategy is to use patient narratives to win hearts and minds.
For Jay Duhig from AbbVie Inc., the message that stood out was on the opportunities to apply health literacy principles when communicating with caregivers. He also thanked the roundtable members for their willingness to expand the definition of health literacy and the many dimensions in which health literacy applies. He reiterated Brach’s comment about the importance of using patient narratives when making the case for health literacy, and noted that he has brought in patients and caregivers to speak to audiences in his organization and has seen the effect their stories have on winning hearts and minds.
Earnestine Willis from the Medical College of Wisconsin also appreciated starting the day with the patient perspective and said those stories drove home the point that health literacy is a tool or tactic to bring the humanity back to the practice of medicine and to get providers to listen to and engage their patients. She commented on the use of paid community investigators and wondered if there should be paid community institutional review boards to ensure that research reflects the community voice. Her final comment was on the need for health care systems to be more nimble and organic in how they serve their customers and to remember that compliance does not equal success when it comes to consumers.
Wilma Alvarado-Little from the New York State Department of Health thanked the speakers on the first panel for their powerful stories and hoped they were not retraumatized by relaying their stories to the workshop. The important points she heard from those presentations were that communication breakdown was the most common cause of medical errors, that Martin Ratermann told his story not looking for sympathy but to be a partner in the roundtable’s efforts, and Jennifer Pearce’s comment that health literacy is about experience, not words. Regarding the commissioned paper, she thanked the authors for identifying gaps that she now sees as opportunities to continue to move the field forward and look at the case for health literacy from a strength-based perspective. She then commented on Hall’s mention of motivational interviewing and trauma-informed care, noting that those are about meeting patients where they are and that they can apply equally to meeting the provider where she or he is when trying to make them effective partners. Alvarado-Little also spoke about the need to define leadership and remember that leaders are not always the people who have a particular title, and she wondered how to help those doing this work who see themselves as leaders or potential leaders in this field and in their organizations.
Jennifer Dillaha from the Arkansas Department of Health said the message that stood out the most for her in almost every presentation was the supreme importance of listening and treating people with respect. “If we do not find the time and a way to do that in whatever system we work in, then we cannot succeed,” said Dillaha. She added that there must be ways for those working in this field to live that message, promote it, and implement it in their organizations.
One important point for Suzanne Bakken from Columbia University was that while technology can be a problem, it must be part of the solution, and it can be when using the principles of co-producing and co-designing with patients. She noted that the National Library of Medicine will be releasing a strategic plan that completely changes the definition of what a librarian is and has many initiatives related to the personal health library, which she predicted will have major health literacy implications. She also predicted that the OpenNotes movement will have great implications for health literacy and present new opportunities for the field to make health information more meaningful to patients.
Bakken then announced that the National Academies had opened a new website centered around the 2017 Pathways to Health Equity report,1 which includes a discussion of the link between health equity and health literacy (NASEM, 2017). She also noted that the home for work on the science of
1 For more information, see https://www.resources.nationalacademies.org/infographics/healthequity/healthequity.html (accessed February 1, 2018).
caregiving is at the National Institute of Nursing Research, which has a grant program focused explicitly on creating health literate resources for caregivers of individuals with Alzheimer’s disease and other forms of dementia.
Francis said that she started seeing health literacy differently as the day progressed. She also wondered if someone could develop a smartphone app that would combine 23andMe and the Adverse Childhood Events score to look at how culture and epigenetics work together to create resilience from a health literacy standpoint. She also thought about health literacy as part of the health equity issue and suggested combining the health literacy and health equity efforts to work together on important drivers of health and well-being.
Stacey Rosen from the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell commented that the needle will never move as long as health literacy is bolted on rather than baked in. She noted how the novel curriculum that Smith developed for medical students at his institution has managed to bake health literacy into how students learn and has produced physicians who care about how they listen to and speak with patients. For her, that reinforces the idea that the definition of health literacy must evolve to include how medical personnel communicate both as consumers and providers of health. She reiterated Alvarado-Little’s comment on the importance of meeting the health care workforce where it is and remembering that nobody likes to communicate badly with patients. Just as consumers need training to be more health literate, so too do members of the health care profession. “If we are educating patients to come in with a family member, to come in with a list of questions or a brown bag [with their medications], then we need to educate the health care workforce on how to deal with that educated consumer,” she said.
Andrew Pleasant from Health Literacy Media noted the importance of including rigorous qualitative and quantitative evaluation with research. Both are needed, he said. “Numbers will get you in the door, but stories will win hearts and minds, and that is what we need to do for health literacy,” said Pleasant. He also commented on the term “health literacy” as jargon and said that it will become dogma. “Health literacy is a social construct, which means it is a living idea that will and should evolve,” he said. He reminded the workshop attendees that health literacy started in the clinical context and that it took a deficit approach and often blamed consumers. Most of health, however, exists outside of the clinic, and if the field remembers that, it broadens the case for health literacy into prevention instead of sick care. Sick care, he said, is not where most people live, and if health literacy becomes part of prevention, it can then be seen as a resource for life and not an end in and of itself.
Terry Davis from the Louisiana State University Health Sciences Center said she loved starting the workshop with presentations by patients, who
she said communicated earnestly on so many levels. She also said she did not care what the field calls health literacy and that what is important is to recognize that health care is changing, so much so that the roundtable has discussions today about things that did not exist when she joined 3 years ago.
Alicia Fernandez from the University of California, San Francisco, said that she calls health literacy “effective patient care,” and that is how she teaches medical students about communication issues. In that regard, she resents having to build a case for health literacy or health equity because why would anyone be in favor of ineffective patient care. What she found useful in the discussion, and that she will use going forward, was the idea of identifying pain points or other ways to communicate that did not completely adopt the assumptions of the people who run an effective health care system. One of her worries as a physician who works in a low-income setting at San Francisco General Hospital is thinking that good care sometimes requires more money and more resources, and she dislikes the premise that to discuss effective care, she has to say it will save money. “Sometimes it will, but often it will not and that is okay, too,” said Fernandez.
Bernard Rosof from the Quality Health Care Advisory Group and the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, offering the final comments, said that while health care has changed and will continue to change, the need for effective communication has not, and in fact, it has only increased. “We can call health literacy what we will, but the need for communication remains and skilled communication is important,” he said. He then told a story about when he and Smith started practicing medicine together during the first 20 years of their careers. At that time, primary care doctors went to the hospital, and hospitalists and emergency department physicians did not exist. Instead, physicians gathered in the hospital coffee shop where they could talk to one another about patient care, their concerns about health care delivery and how they were practicing medicine, and about how to communicate with patients. “The absence of the coffee shop obviously does not mean we still do not learn communication skills, but it was a place you could practice it,” said Rosof.
Referring to his presentation, Rosof said the National Quality Strategy and the Quadruple Aim are about improving care and improving the health of the population and the community, which means taking the underserved into consideration. In his opinion, it is not possible in the absence of effective communication to address the health disparities that affect underserved populations. He also believes that the goal of improving health care for the entire population is something that the young people who are going into health care today are taking on, and that is something of which he is proud. On that note, Rosof adjourned the workshop.