The final session of the workshop featured a presentation by Scott Ratzan, vice president of global corporate affairs at Anheuser-Busch InBev. George Isham introduced him as a long-time advocate for health literacy and a former member of the roundtable. Ratzan was asked to speak about where the health literacy field needs to go from this point forward. He started by comparing where the field or discipline of health literacy is today and where the field of health communication was when he started a master’s degree program for that discipline at Tufts University 20 years ago. Some 450 people have since graduated from what was then the first health communication program in the nation, and today there are 46 such programs in the United States. “That field has found its place and I think health literacy is on its way,” said Ratzan.
Ratzan noted that there is a public–private partnership forum within the IOM that is looking at global health and safety, as well as other areas that tie into this Roundtable’s activities. He expressed hope that the two groups could engage each other. In his current position at Anheuser-Busch InBev, he is learning what beer companies do well that can be translated into public health. He also stated that everyone at this workshop, regardless of what sector they come from, contributes to health literacy and has a role to play in moving the field forward.
The Journal of Health Communication, he explained, has published several supplements specifically on health literacy and also recently pub-
1 This section is based on the presentation by Scott Ratzan, vice president of global corporate affairs at Anheuser-Busch InBev, and the statements are not endorsed or verified by the IOM.
lished an evidence summit supplement for the U.S. Agency for International Development and UNICEF that had a subset on health literacy. There were not enough data in the global health world, he noted, for the inclusions criteria of populations younger than 5 years. “There is health literacy there, but the evidence base could be much stronger in certain areas,” said Ratzan. He also said that health literacy has now become a strategic tool that is used in global organizations to maintain and generate coherence and coordination among multispectral programs, particularly because the United Nations held a regional meeting of the Economic and Social Committee in Beijing. Since then, health literacy has been included in three United Nations resolutions and has been integrated into national action plans of China and other countries. More people, he said, are realizing that literacy, communication, and education have a role to play in global health.
What drives the global community, said Ratzan, are the data showing a link between literacy and health. For example, a systematic analysis of 175 countries between 1970 and 2009 found that more than half of the recent reductions in child deaths are linked to gains in women’s educational attainment (Gakidou et al., 2010), while another study showed that education has a positive impact on an entire community’s well-being, not just on a child’s health (Basu and Stephenson, 2005).
To move forward and be most impactful, the next frontier in public health needs to be “smarter” and to consider theories and ideas from diverse fields, including behavioral economics, social psychology, sociology, demography, and communication. He referred to the model that Ruth Parker presented in the workshop’s first panel session that puts health literacy at the intersection between an individual’s skills and abilities and the demands and complexity of the information and what is being asked of the individual. The importance of this model, Ratzan said, is that it points not just to the role of the individual, but to the system as a place where work is needed to improve health literacy. He then discussed Ilona Kickbusch’s model that says that efforts to impact health literacy and create a health-competent society require a system that is functioning; an educational system active in the home, community, and workplace; and media and new technology that can reach into society. In addition, a foundation of support must exist in the policy and political arena for such efforts to maintain a sustainable focus on the health of the individual (Adams et al., 2009; Kickbusch, 2010).
What Ratzan has done, he said, is take Parker’s model and add a third arrow, one that denotes the integration of more social influence and technology into the health literacy framework as a means of inspiring individuals to make the right choices to benefit their health. He also took as a challenge the idea that health could be represented by a small number of variables in the same way that astrophysicist Martin Rees described
the universe using just six numbers (Rees, 1999) and created the Digital Health Score, which functioned something like a credit score and serves as a health literacy metric for chronic disease (Miron-Shatz and Ratzan, 2011; Ratzan et al., 2013). The score includes measures of body mass index, blood pressure, cholesterol, fasting blood sugar, smoking or tobacco use, physical activity, and alcohol usage, with no adjustment for age and one adjustment for gender and alcohol use. The Digital Health Scorecard is a HIPAA-compliant app for an Android or Apple smartphone that can give consumers an overall health score and ideas on what could happen if they improved their health risk factors. One thing he learned from this exercise was that no matter how good an idea is, without marketing muscle behind it or the ability to disseminate it using older technologies, it will just sit in the app stores.
Ratzan then brought up the question of how to link this type of work with communication strategies for Ebola, something he said should be simple but is not. He noted that in 2013 he predicted that the health community was not prepared for communicating health-literate information about the next global pandemic (Ratzan, 2013), and as it turned out, he was correct (Ratzan, 2014). This was a failure not of health literacy, but of how the system implements health literacy. “If we can use this as an example of that teachable moment and be prepared for the next one, it would make a huge difference,” said Ratzan. The health literacy community, he added, has a great opportunity to do something in this regard.
Another opportunity for the community is to take advantage of mobile technologies to enhance health literacy. Mobile telecommunications, he said, can bridge the global health gap and bring health and health information to millions of people. Some 85 percent of the world’s population is now covered by one or more commercial wireless signals, and mobile phones have a much broader reach than other forms of digital communication and therefore can be an important avenue for reducing the digital divide. As an example, he described an application, Text4Baby, that can deliver free tips on a cell phone to help mothers through their pregnancy and their baby’s first year of life. This was developed through a public–private partnership with the White House Office of Technology Policy and involved some 800 nongovernmental organizations. The app is now being evaluated by HRSA and the methodology used to develop it has been published (Whittaker et al., 2012). He noted that Text4Baby is a simple, generation 1.0 example of how health can be within arm’s reach, though he also cautioned that in addition to putting health within arm’s reach, cell phones are creating a health hazard—distracted driving—within arm’s reach, too.
Ratzan then challenged the health literacy community to start thinking big in terms of what it can accomplish with respect to big issues. The World Economic Forum, he said, comes out with a Global Agenda Report
each year that lists the biggest risks to the world’s financial system, and it turns out there are many health issues on this list, including chronic diseases in developed countries, developing world diseases, climate change, and pandemics. This list prompts a rhetorical question of whether the health literacy community is doing enough in these areas, but it also led Ratzan to discuss another area in which he is interested: traffic accidents, the number one cause of death worldwide for persons ages 15 to 29 and the eighth leading cause of death for all age groups globally. This is a public health issue that is only projected to get worse and soon become the fifth leading cause of death, surpassing diabetes and lung and throat cancer, he said.
In his new role at Anheuser-Busch InBev, Ratzan said he is trying to think big and create a new coalition called Together for Safer Roads with the big vision that roads are safe for all people: pedestrians, bicyclists, motorcyclists, and drivers alike. So far, this effort has drawn in companies such as AIG, AT&T, Chevron, Facebook, IHeartRadio, PepsiCo, and Walmart. This initiative was launched at the United Nations Headquarters on November 13, 2014, with the goal of bending the curve on road traffic accidents so that they are no longer one of the leading causes of death and injuries worldwide. Health literacy, said Ratzan, needs to play a role in setting the new social norms that are needed to meet this challenge.
The path forward on health literacy, said Ratzan, will involve the Internet, and the field must figure out a way to leverage this web of technology to benefit and not harm individuals. If computers replace primary care physicians in some places, for example, will that lead to having empowered, engaged, emancipated, and competent consumers? It can if health literacy principles play a role in the development of such technology. The biggest challenge for the field is to empower consumers, said Ratzan, not just in the United States, but worldwide.
Ratzan concluded his presentation with a list of key areas that the roundtable and the field should consider. He believes, for example, that it would be great to have a new IOM consensus report on health literacy that included recommendations for integrating in the new health system the use of new technologies and for including health literacy in the ACA. He also proposed elevating health literacy models for social and behavior change with effective communication training to change social norms and to link with key organizations and institutions.
Ratzan noted that Columbia University, where he teaches a course as an adjunct professor, is going to offer a state-accredited health communication certificate program that will have a health literacy component, a step he believes will raise the level of the health literacy field in the same way that the creation of the health communication program at Tufts benefited the health communication field. He applauded the IOM’s continued efforts to drive the field of health literacy forward, but said it is time for other
organizations to get involved and start their own activities. Along those lines, it is important to continue to build and disseminate the interventions that will enable people to make smarter choices as the nation moves from an eminence-based to a patient-centered health system.
Finally, he asked, “How do we invest in communication technology and innovations and advancing these partnerships to improve health literacy and thereby produce better outcomes?” There is no longer a need to prove that health literacy and health communication make a difference in health outcomes, but what is necessary is that health literacy and health communication have to develop scale. Ratzan recounted how he used to chair an innovation working group and that he would remind people that there is no such thing as a fool-proof innovation. “You’ve got to try ideas and if they fail, learn from that and try another idea and another idea,” said Ratzan, who encouraged the health literacy community to learn from that and start pushing innovations into the marketplace.
Stacey Rosen, associate professor of cardiology at Hofstra North Shore–LIJ School of Medicine, started the discussion with two ideas that she was taking away from the workshop. The first was that not only is the field witnessing a paradigm shift in terms of moving from the myopic focus on individuals to professionals and institutions, but also in moving to a greater focus on physical determinants of health and issues of equity, where health literacy can play an important role. The second take-away, one that was not as positive, was the recognition that those who work in the field of health literacy remain disengaged from the consumers of health information. She remarked that “one of the oldest tenets in the field of health education in public health is that you do rigorous work, you do rigorous formative research, you do rigorous piloting, and you engage with members of the intended audience to help identify the problems and help generate the solutions,” said Rosen. “We don’t seem to be doing that.” What happens, she said, is that an occasional innovative program does do that, but that then does not become the baseline for rigor or engagement with the intended audience.
Along the same lines, Kim Parson, from the Consumer Experience group at the Humana Center of Excellence, echoed comments from Rima Rudd and Ruth Parker, who pointed out that patients are the experts and the field must figure out how to partner with them. “What I’ve heard throughout the day is that’s where opportunities still lie, and yet I don’t know that we really have figured out how to partner with them or if we’ve really made the amount of effort that we need to figure out how to partner with them,” said Parson. She proposed that this is an opportunity going
forward that the field should seize upon to create both a health-literate population and health-literate organizations.
Wilma Alvarado-Little, noted her appreciation of Howard Koh’s opening comments on health literacy and Culturally and Linguistically Appropriate Services (CLAS) standards, particularly as the United States becomes a majority/minority country and needs to be aware of those standards and implement them into health, health care, and social services. She also commented on Gerald McEvoy’s remarks that drugs can have different names depending on an individual’s country of origin. As a translator and language advocate, she sees the confusion that this can cause with increasing frequency. She noted, too, the importance of Wong’s remarks about health equity and race, place, and fate.
Catina O’Leary voiced her agreement with Rosen’s remarks about a lack of connection and rigor, and added that the field is also neglecting to address important methodological questions. She noted that the field hasn’t dug deeply enough to understand some of the methodologies and approaches to data analysis that it uses. “We need to think about not just what we ask but who we ask when we ask these questions, where we ask them, and who is doing the actual asking,” said O’Leary. She added that the research community needs to consider clearly the methods used to assess organizational health literacy, not just in terms of reliability and validity, but also with regard to utility, appropriateness, and bias. She appreciates the need to acquire multiple data sources, but added that “we can’t triangulate if we don’t actually have a real clear conceptualization of how these things work together and how we frame the meeting.”
Bernard Rosof reflected on Koh’s statement that there is an organizational responsibility for health literacy and a need to change culture within an organization to promote systems change. “You’ve heard me say before that culture eats strategy for lunch, and I think we need to focus on the culture change within an organization and integrate that into what other people are doing within the organization,” said Rosof. “It’s a bottom-up philosophy rather than a top-down philosophy.” He also reiterated Wong’s message that social determinants must be addressed to improve health and achieve health equity and that the conversation about that must be moved to the community so that both the health system and the community understand what is at stake.
Robert Logan from NLM recounted the repeated experience he has had when he asks audience members how not having access to health insurance affects their lives. At first, he said, nobody answers, so he reframes the question to ask how many people in the audience have had to work extra because someone in their family was ill, and that provokes a lively discussion. He then asks if anyone in the audience had ever had this discussion in college or in high school, and in all the years he has been conducting this
exercise, only one person responded yes. He told this story to drive home the point that the field needs to work with people who want to spark discussions about prevention, wellness, and health information seeking in the K-12 setting and in universities across the country. “I realize today we’ve heard a lot about professional education and I agree with that, but I think the job is actually much more significant than that,” said Logan. He also noted as important the comments that were made throughout the day on community outreach initiatives and the opportunity to partner with community groups going forward.
Winston Wong remarked on the restlessness in the field because, as he put it, “the train always seems to be a couple of stops in front of us,” a situation he blamed on the nature of how health literacy is defined, on how society is now defining health, and on how individuals, consumers, and patients are framing questions about health for themselves in the 21st century. As a result, the health literacy conversation, he said, is only relevant to how people are starting to relate to the question of wellness and health. This is no longer just a matter of health delivery reform, but is now a broader question with regard to individuals and their interface with communities and society. “We have to be relevant to that,” said Wong. Isham called that a wise comment and one with which he wanted to be associated, and also commented on the wisdom of the practical ideas that Ratzan listed at the end of his presentation and of thinking about considering a new IOM report on health literacy. Isham also reiterated the points that health literacy should consider the context of what a good day means to the intended audience for health information, that the field is moving to broaden its horizons beyond health care to community health, and that health literacy is just one piece of a complex systems issue.
Laurie Myers, leader of health care disparities and health literacy strategy at Merck & Co., Inc., reinforced the message that health literacy will advance when it is integrated with other things that are important to health organizations. She also noted the importance of health literacy with regard to increasing the representation of minorities in clinical trials and in running clinical trials. “We need to ask patients about clinical trials, their perspectives, and what the things that are critical to them are, and we need to train minority-serving investigators, not just minority investigators,” said Myers. She said that she and her colleagues have been piloting a program around cultural competence and teach-back that has been incredibly well received. She also noted the need to educate pharmaceutical companies about the importance of health literacy in clinical trials and to apply the principles of health literacy throughout the clinical trials process, including informed consent, patient diaries in clinical trials, lay summaries of the trial procedures for participants, and ultimately in the patient labeling that is submitted for regulatory approval.
Laurie Hall, remarked that pharmaceutical companies are in fact trying to do a better job of listening to what patients and clinical trial participants want in terms of information and how they want to receive it. Pharmaceutical companies, she said, are not merely the sales and marketing machines that they are often portrayed as being, but are really motivated by the concept of shared value. She recounted something she heard from a colleague of hers who works in the clinical development innovation space, who said that in the past, those running clinical trials treated volunteers as raw materials in a supply chain process, but now volunteers are being brought into the process, being asked for input into trial design, and being honored for their contributions to the trial process. Part of that honoring, said Hall, comes from keeping volunteers engaged all along the trial process, which in turn comes back to communication. Betsy Humphreys commented that it should be possible to build into late-stage clinical trials the information on how a therapeutic candidate will be used to test the utility of that information along with the therapy itself in the clinical trial.
Continuing with her comments, Myers said she agreed with Michael Wolf’s remarks that the field has lost some energy and that it needs to expand the conversation beyond the same people who participate in virtually every meeting on health literacy. She wondered if one way to do that would be to create what she called cheat sheets on health literacy and numeracy methods for people who want to engage, but do not have the time to invest in learning everything.
Michael Villaire commented that he is heartened by the way the medical model has been flipped from one in which patients had to come to the health care system for information to one in which the health care system reaches out to the patient and listens to what the patient needs and wants. He noted that with the passage of the ACA and the resulting influx of more people into the health care system, there are more opportunities for the health literacy community to do more listening and, in particular, to use new technologies to do so. He also remarked that health literacy is required and less optional today, which also creates opportunities for the field. What needs to happen, though, is for the health literacy community to do a better job disseminating its knowledge throughout the health care enterprise.
Ruth Parker, commenting on Ratzan’s call for a new IOM report on integrating health literacy into a new health system, asked if he thought whether emphasizing the role of technology as a means of simplifying health messages and messaging would help secure funding for such a report. Ratzan replied that while he could not answer that question, he did think that Parker’s suggestion was a good one and he did suggest that funding sources beyond the traditional government agencies that have been involved from the start should be brought into the process. He, in turn, wondered how things such as checklists, scorecards, and algorithms that have helped
make health care safer and reduce costs could be adapted using technology for the consumer. He noted that all of the big technology companies are looking for ways to get a piece of the health care pie, but the key will be to get the health and health care communities leading where technology should go rather than the other way around.
Isham’s take from the discussions about complexity is that in order to get simplicity, it is necessary to understand the causes of complexity at a more robust level, which is a place for academic research. But there is a combination of opportunities for health literacy that involves policy, initiatives in the private sector, and the development of rules and a common understanding of how complex systems work. Following up on the conversation about simplicity, Lindsey Robinson said that preventing oral disease and dental disease is simple, but implementing that and getting the word out is difficult, and that is where the field needs to pay attention to social determinants. She noted, too, that there needs to be a business case made for oral health literacy that could start with the observation that in the last recession, when many states eliminated Medicaid funding for adult dental care, emergency department visits for oral health problems soared by more than 4 million at a cost of $2.7 billion. Sixty percent of these patients had insurance, yet they could not access care because they did not understand how to get care under the provisions of their insurance.
Marin Allen, deputy associate director for communications and public liaison and director of public information at NIH, said she would like the field to develop a 360-degree operationalization of what equity is so that it does not have to be built piece by piece. She also voiced the need to integrate health literacy into core services so that it is not seen as just a nice add-on to current processes and to study the complexity of risk, particularly with regard to the emotion of risk and its relationship to trust and fate.
Andrew Pleasant, senior director for health literacy and research at Canyon Ranch Institute, also supported the need to embrace and address complexity in actionable ways that do not just accept complexity as a barrier to improving health and advancing health equity. He remarked that the health literacy field needs to get away from blaming various segments of the population because they are not fully health literate and to add a focus on prevention to future research. He then noted that the Roundtable’s next workshop, on March 24, 2015, will look at health literacy and new technology.
Cindy Brach, a member of the Roundtable, noted her surprise at hearing so much during the workshop on social determinants of health given that much of her work over the past 18 years at AHRQ has been about fixing a broken system. She also commented that back in 2010, the field seemed to be at a tipping point given that health literacy was included in the ACA, there was the Plain Writing, and there was the National Action Plan
to improve health literacy, but today, 4 years later, she said she believes the field has lost momentum. She wondered why the field is still “fighting and slogging to drag organizations to address health literacy,” when nobody would argue that it is important to patients to be able to understand communications from their health systems and for individuals to understand what to do to stay healthy. While she agreed with Rosof that culture eats strategy for lunch, she noted that “you can’t start with culture change.” What then, she asked, are the policy levers that have to be pulled to really get to a tipping point and get past it? In her mind, said Brach, “we need to link health literacy and cultural competence to patient safety, because that is what everyone is paying attention to,” particularly with the emphasis on patient-centered care, self-management, and shared decision making. In thinking about future opportunities, she said that palliative care and end-of-life care would be good areas for the Roundtable to explore. Isham concluded the discussion, and the workshop, by restating the need to move health literacy more broadly into health and to think about health literacy from a systems perspective and not just as an issue for individuals.