Spanish-speaking populations, by virtue of their size, have garnered the majority of LEP and non–English health literacy research funding in the United States. Despite the fact that more than 376 languages are used in the United States, a review of the literature reveals very few of these studies extend beyond English and Spanish. Schillinger, Bindman, Wang, Stewart, and Piet (2004)
demonstrated that even when accounting for language barriers, inadequate reading and health literacy were highly prevalent in one Latino population sample; only 55% of Hispanics have a high school diploma, and only 10% have a bachelor’s degree (Schillinger et al., 2004
). Inadequate health literacy may be even higher for smaller linguistic minority groups as a result of a paucity of accessible media and patient education.
Certain immigrant populations and Deaf ASL users live in relative isolation. These populations provide unique research challenges and opportunities because of reduced social interactions with the media and limited contact with allopathic norms, public health and prevention messaging, and health education. These groups experience poor patient–provider communication and frequently rely on inaccurate and inconsistent information from their social networks and the Internet (McKee et al., 2011
; Valentine & Skelton, 2009
; Vernon & Lynch, 2003
Deaf ASL users, in particular, present a unique study population because they struggle with poor communication (i.e., due to hearing loss), language discordance, and possibly inadequate health literacy partly because of decreased opportunities to correct misinformation, and limited health surveillance (McKee et al., 2012
). Deaf ASL users are considered an LEP population by the U.S. Department of Health and Human Services (U.S. Department of Health and Human Services, 2001
); yet, they are rarely included in health literacy and LEP research studies. This is likely due to limited health and demographic information about Deaf ASL users, scarcity of adapted and validated research surveys and instruments in ASL, difficulty recruiting and accessing this population for research, inadequate supply of Deaf ASL proficient investigators, and concern about handling potential cognitive issues when present.
The exclusion of linguistic minorities is ultimately due to the fact that they are minorities. The research funding and the workforce are limited. Investigators want to have the largest possible impact and have research products that reach a critical mass. Although smaller language populations may be challenging to recruit and study, they are often most in need; work with such populations underscores a striking absence of health information accessible in languages beyond English and Spanish. Rudd and Anderson (2006)
argued that existing health literacy interventions can be modified to apply to at-risk individuals and that environmental evaluations of health care systems to reduce literacy and language barriers could benefit a broad array of patients. The same approach to currently existing health literacy and LEP research tools and interventions can help identify critical steps needed to create greater inclusivity in research.