Professional Development in Health Literacy Research
HOW DO WE BUILD THE FIELD OF HEALTH LITERACY RESEARCH?
David Baker, M.D., M.P.H.
Feinberg School of Medicine
In discussing how to build the field of health literacy research, the first question to ask is, what should health literacy research look like in 2020? Twenty years ago, health literacy research was in the era of discovery and enlightenment because it was recognized that there were patients who could not read and understand the things expected of them in the health care setting. Next came the era of epidemiology and association when it was discovered that low literacy was associated with poor knowledge and self-management skills, underuse of preventive services, higher hospitalization rates, and increased mortality. Causal pathway research came next, pathways that went beyond reading ability alone. There is still a great deal of work needed to understand causal pathways. Most recently, research is moving to the testing of interventions. The HARC conference was exciting in its breadth of research on different types of interventions. Determining how to design and implement interventions will be long, hard, incremental work.
Better educational tools that can be integrated with routine care are needed. Delivery systems—personal health records, telephone, new media—must improve. Even if the tool is excellent, if the users are not
interested or do not want to listen, the tool will not help them. A key challenge now is to identify ways to empower and activate patients.
To move health literacy research forward, there needs to be a broader multidisciplinary group of researchers working on the problem. Clinician-investigators are not the best group to be developing strong interventions; their strength is in developing strategies for implementing solutions into routine care. Cognitive psychologists and people from the learning sciences are needed to develop interventions. Strategies are needed to bring these groups together.
In terms of causal pathways, it is now recognized that worse health outcomes for individuals with low health literacy are not simply due to inability to comprehend print, multimedia, and oral messages. Causes are multifactorial, including differences in background knowledge, community beliefs and norms, information-seeking behaviors, self-efficacy, and healthcare seeking behaviors. To explore causation, there needs to be outreach to such fields as sociology and medical anthropology to understand health and healthcare beliefs, healthcare seeking behaviors, community norms, and social networks.
A study of hospitalization rates on 3,000 Medicare patients found that rates were about 30 percent higher for patients with low literacy (Baker et al., 2002). After tracking the patients for 7 years, age-adjusted mortality for people with low literacy was 52 percent higher than for those with adequate literacy (Baker et al., 2007). Clearly, there must be other factors besides the health care system that are affecting longevity. The focus needs to go beyond the healthcare system. To explore these causal pathways requires partnerships with researchers from other disciplines.
Fostering a diverse new set of investigators who can develop effective interventions requires better educational tools and systems, including more use of lessons from the learning sciences and cognitive psychology, Baker said. For implementation science, communication needs to be hard wired into the healthcare system. The question is not one of whether to use multimedia or print. It is about designing a system of integrated education and reinforcement of key messages that can be applied in everyday practice and meet patients’ learning styles.
There are several avenues for bringing in other disciplines to health literacy research. HARC is one. A new summer institute, modeled after the American Heart Association’s epidemiology conference or the National Institutes of Health’s Office of Behavioral and Social Sciences Research summer research training conference, is another possibility. A summer institute could help junior investigators develop their knowledge and skill set. Applications could be required so that attendees come in with some level of preparation, and scholarships need to be provided.
Practice-based research networks offer a tremendous opportunity
for partnerships to test practical health literacy interventions. The Health Resources and Services Administration (HRSA) is sponsoring a new network on comparative effectiveness called CHARN (Community Health Applied Research Network). There should be excellent partnership opportunities within CHARN for health literacy research. The health maintenance organization (HMO) research network is well established and is another resource to consider. The bottom line, Baker said, is that is it imperative to engage other disciplines if health literacy research is going to move forward.
HEALTH LITERACY RESEARCH: BUILDING THE FIELD
Debra Roter, Dr.P.H.
Johns Hopkins Bloomberg School of Public Health
The Institute of Medicine (IOM) has played an important role in developing the field of health literacy. Especially important is the IOM’s introduction of the notions that health literacy is a function of literacy skills in relation to literacy demand. While health literacy research has grown exponentially, it has been largely from the vantage point of individual literacy skill assessment and deficit amelioration, somewhat in regard to measurement and reduction of literacy demand, but with almost no attention to the in relation to demand pathway pioneered by the IOM report.
The focus of her presentation, Roter said, is a critical address of the state of the art. Is the field of health literacy theoretical enough to be creative? And is it creative enough to flourish?
Beginning with the notion of theoretical creativity, there is nothing as theoretically interesting as a good question; to ask the right question requires logic, intuition, and curiosity as well as background and grounding in experience. And to do this well, to keep the research question useful and relevant, is to partner with natural constituents. We cannot have confidence in the questions asked if they are asked in isolation of those who are most directly affected by the answers. The application of community-based participatory research is critical in this light because it challenges researchers to be honest. Silos exist across academic disciplines, as well as between community groups and the researchers, with the result of insulating the field and limiting its relevance. Far too frequently, participatory collaborations are missing from health literacy research. Especially lacking have been partnerships between health literacy experts and those working in adult basic education and English as a second language (ESL) groups, with the formal education system, and with health delivery sys-
tems. These types of partnerships hold the promise of mutual benefit, and provide a source of creative—and theoretical—thinking.
Roter said she was going to suggest something quite heretical. All too often, formal theory can, paradoxically, act to constrain theoretical thinking. Theory can come from experience, observations, or the desire to reconcile conflicting empirical results. It need not be restricted to the handbooks of usual theory that proliferate on library shelves. Much research that is considered atheoretical is actually grounded in theory (formal or informal), but investigators, particularly young investigators, may lack the confidence to explicitly link their rationale and logic to hypotheses and predictions. More exploration and deliberation of this type is needed, and new and fresh eyes may be the ones that see the patterns and connections that previously misled.
An argument can also be made for health literacy to be more methodologically imaginative. Is it possible to investigate questions in ways that step outside the box? For instance, simulations have not been widely used in literacy research, but they can accomplish training, evaluation, and research objectives not possible in natural settings. Simulators can be patient proxies, including standardized, simulated, analogue, and virtual patients. Simulated or standardized patients refer most often to healthy people, or patients afflicted with a medical condition, who have been trained to accurately and consistently present a scripted case, or in some instances, provide improvisations and spontaneous role-playing while staying in character. Another type of simulator is an analog patient. These are untrained subjects recruited on the basis of specified criteria, for instance, a person with a family history of cancer, or someone who has recently visited a health clinic or received a particular diagnosis. The subjects are instructed to imagine that they are patients depicted in a videotape, audiotape, computer program, or written vignette. Often the viewed scenario has been experimentally manipulated in some way.
There is a great advantage to using simulations, especially for investigating unusual or logistically difficult phenomena or stressful, private situations within the medical context. As John McKinley noted, it is time for us to move into second and third generation methodologies that allow for experimental manipulation to disentangle confounded phenomena, such as ethnicity and literacy (McKinlay et al., 1996). In this vein, Roter said she and her colleagues used a combination of simulation and analog studies to investigate how genetic counseling is delivered. Two hundred genetic counselors interviewed simulated patients. This is by far the largest study of genetic counseling practice (Roter et al., 2007, 2009). The study found that genetic counselors who communicate in a way that is characterized as carrying high literacy demand, using grammatically complex language, are not liked very much. The simulated patients in these sessions were
not satisfied with informational or interpersonal behavior of the genetic counselors. Moreover, analogue patients with restricted literacy were not able to recall as much from these high literacy demand sessions as they could from sessions that were more conversational.
Another creative methodology is the use of virtual reality to explore the likely response of patients to a variety of manipulated variables. It is known that analogue patients viewing computer-generated physicians act very much like patients in clinics. This line of research can shed light on the complicated domains by which cognition and emotion are communicated and also contribute to our understanding of pathways that relate to the “in relation to” component of the IOM definition of health literacy mentioned at the beginning of this talk.
The answer to the question, is the field of health literacy theoretical enough to flourish, may be tied to the extent to which we can meaningfully cross silos that foster innovative thinking, new methodologies, and authentic partnerships, Roter concluded.
Brach commented that her perspective of the presentations by Baker and Roter is that Baker focused on how to mentor and grow the field of health literacy research with new personnel while Roter focused more on the nature of research. Brach suggested that both approaches are needed in order to attract more young researchers and build a robust core of people doing health literacy work. Baker agreed: young researchers will be attracted by an interesting, exciting area that pushes the envelope in terms of methodologies. If a summer institute taught the most exciting, cutting-edge work it would be a draw. Roter suggested that this is an opportunity to create something transdisciplinary and integrative. Include an anthropologist, economist, clinical psychologist, and behaviorist at the table, she said. People will learn new ways of thinking and looking at the problem. Build something exciting and intellectually challenging, and young researchers will want to come. But it needs to be funded.
Yolanda Partida, roundtable member from the University of California San Francisco Fresno Center for Medical Education & Research, asked if there is a way to encourage practitioners to start thinking this way now. Baker replied that there are no good models yet. Take, for example, EHRs. Most practitioners still use paper records. But the technology problems with EHRs will be worked out. That will be time to engage those networks, to find out what are best practices, and to disseminate that information.
Rima Rudd offered that the way forward is to move outside the doctor’s office. Most health activities take place at home, at work, in
the community. Both presentations, however, were focused on the healthcare setting. She challenged the presenters and other researchers to envision research questions that move the discussion out of the realm of the clinician’s office and into the field of health literacy, which is community based and outside the very narrow clinical encounter. Baker agreed with the need to move beyond the clinical encounter to include research both pre- and post-encounter. Some researchers have begun this work in the area of obesity research and behavioral change research, but the focus must be on a continuum, not just one episode of care. Another point is the need for communication about health to begin early in schools. For example, people should not graduate from high school unless they know what diabetes is. Finally, the public health messages need to be the same as what people hear in the clinics, Baker said. Familiar messages in familiar language with familiar images, otherwise there is cognitive dissonance.