Report on the First Annual Research on Health Literacy Conference
MICHAEL PAASCHE-ORLOW, MD, MA, MPH
Boston University School of Medicine
The problem of low health literacy has been acknowledged, Paasche-Orlow said. Now researchers are trying to figure out how to do something about it. A great deal of research is needed because, while there has been an increase in publications on health literacy, the majority of studies have been observational, with very few clinical trials.
The Health Literacy Annual Research Conference (HARC) was created as an interdisciplinary meeting for investigators who are dedicated to health literacy research with two aims: to advance the science of health literacy research and to serve as an engine to promote professional development in the field. The first meeting, held in October 2009, had two themes: the role of health literacy research in the elimination of health disparities, and health literacy and health information technology. After keynote addresses on the role of health literacy in patient education1 and on the role of health literacy in health disparities,2 four panels of invited speakers discussed measurement; health literacy and verbal interactions; health information technology (HIT) interventions; and organizational assessment and change. Current gaps in the research were examined by invited speakers and in breakout sessions relating to public health
approaches to health literacy, health disparities and health literacy, and health IT. All of the presentation slides are available on the conference website.3 A special issue of the Journal of Health Communication, guest edited by Paasche-Orlow, Lauren McCormack, and Elizabeth Wilson, reported on the HARC meeting and was published in September 2010, with free full text access online for 6 months.4 HARC II took place October 18-20, 2010, during the preparation of this report.
Limited health literacy has been linked to worse health outcomes for a range of medical conditions, Paasche-Orlow said. In addition, limited health literacy is more prevalent in specific racial and ethnic minorities. Although these findings have been widely acknowledged, little systematic research has been conducted to elucidate the role of health literacy in the creation of health disparities or to evaluate the possibility that interventions relating to health literacy may help eliminate health disparities.
In thinking about underlying contributions to health disparities, one perspective is that unneeded complexity in public health and health care systems transforms underlying educational disparities in our society into health disparities. Therefore, health literacy can be a roadmap to developing interventions to address health disparities. To differentiate the pathways through which people experience worse outcomes, both health disparities and health literacy need to be measured.
In a study of 204 patients with HIV, an initial analysis did not include literacy (Osborn et al., 2007). Results appeared to show that African American patients were much more likely to not adhere to their HIV medication regimen than whites. But when literacy was controlled for, the race effect diminished. The literacy variable was the only significant independent predictor of nonadherence. Those two very different results would lead to different types of interventions.
In a second study, patients were asked their preference regarding end-of-life care if they developed advanced dementia (Volandes et al., 2008). In an analysis that did not consider health literacy, African-American subjects appeared to be much more likely to want more aggressive care at the end of life. A handful of other studies support this conclusion. But the studies typically do not control for socioeconomic factors, and certainly not literacy. When controlling for health literacy in the study by Volandes and colleagues (2008), the race finding evaporated, and health literacy was found to be the dominant predictor of wanting more aggressive care at the end of life. Finally, when subjects were shown an educational video, differences by race as well as health literacy dropped. The preference for
aggressive care was not a true underlying cultural preference, but rather a misunderstanding and lack of communication about end-of-life care.
In the studies discussed above, as stated previously, analyses that control for health literacy and those that do not, yield vastly different responses. If the issue is one of cultural differences, clinicians are asked to respect and protect that preference. But if the issue is a literacy issue different interventions are needed, interventions that address the issue of poor health literacy.
The second theme of the HARC conference was health literacy and health information technology. Much of the motivation to work in health literacy revolves around the desire to address the needs of vulnerable populations. How will patients with limited literacy skills be able to access technologies? And if they obtain access, will they be able to use the technologies? The open marketplace may not serve the patients with limited literacy. What needs to be done, Paasche-Orlow said, is to make sure that as the health IT movement gains momentum, it does not exacerbate disparities. It is probable that advances in health IT will, in the short term increase disparities, he said. But if work is done now, perhaps that can be overcome.
Across two different intervention studies, to be published in the special issue of the Journal of Health Communication, researchers found that people with limited literacy are able use health IT systems. In these studies, an interface that talked to users who responded by touching the screen was used, demonstrating that it is possible to build an interface that people can and will use.
Health literacy research takes a long time, both to obtain funding and to implement. But the research itself is a form of advocacy. By examining the effect of health literacy on different aspects of health care and health outcomes, researchers can reveal interventions that might work to eliminate or reduce problems, Paasche-Orlow concluded.