Health Literacy Research Funded by the NIH for Disease Prevention

Abstract

Background: Advancing health literacy is a fundamental step toward achieving population health. To that end, the National Institutes of Health (NIH) funded research to increase scientific understanding of how health literacy can reduce disparities and enhance the health of the United States.

Objective: This study identified and evaluated NIH-funded health literacy research focusing on disease prevention.

Methods: New R01, R03, and R21 research project grants awarded from fiscal year (FY) 2004 to FY 2017 studying health literacy and disease prevention were identified. Study characteristics, including the role of health literacy, how health literacy was measured, populations studied, and study design, were coded for each grant. Administrative grant data were obtained from the NIH's internal database. Research impact was assessed using the relative citation ratio (RCR).

Key results: There were 192 grants studying health literacy and disease prevention awarded by 18 NIH institutes and centers from FY 2004 to FY 2017, covering a wide variety of health conditions including cancer (26.0%), infectious diseases (13.5%), nutrition (8.3%), drug/alcohol use (7.8%), and cardiovascular disease (6.3%). Most grants studied the health literacy skills of patients (88%), with a few studies assessing the health literacy practices of health care providers (2.1%) or systems (1%). There was good representation of populations with traditionally low levels of health literacy, including Black/African American participants (30.2%), Hispanic/Latinx participants (28.6%), older adults (37%), and people with low income (20.8%). The scientific articles generated by these grants were more than twice (RCR = 2.18) as influential on the field as similar articles.

Conclusions: The NIH provided support for a wide array of prevention-focused health literacy research. The value of this research is highlighted by the number of funding institutes and centers, the diversity of populations and health conditions studied, and the effect these grants had on the field. Future research should move beyond patient-level health literacy to health literacy practices of health care systems and providers. [HLRP: Health Literacy Research and Practice. 2020, 4(4):e212-e223.] PLAIN LANGUAGE SUMMARY: This study describes health literacy research funded by the National Institutes of Health that focused on disease prevention. These grants sought to prevent a variety of health conditions, but health literacy research over the past 14 years continued to concentrate on the capacity of patients despite increased attention on the health literacy practices of health care providers and systems.

Figure 1.

National Institutes of Health institutes and centers administering health literacy research grants in prevention for fiscal years 2004 to 2017 (N = 192). FIC = Fogarty International Center; NCI = National Cancer Institute; NHLBI = National Heart, Lung, and Blood Institute; NHGRI = National Human Genome Research Institute; NIA = National Institute on Aging; NIAAA = National Institute on Alcohol Abuse and Alcoholism; NIAID = National Institute of Allergy and Infectious Diseases; NICHD = Eunice Kennedy Shriver National Institute of Child Health and Human Development; NIDCD = National Institute on Deafness and Other Communication Disorders; NIDCR = National Institute of Dental and Craniofacial Research; NIDDK = National Institute of Diabetes and Digestive and Kidney Diseases; NIDA = National Institute on Drug Abuse; NIEHS = National Institute of Environmental Health Sciences; NIMH = National Institute of Mental Health; NIMHD = National Institute on Minority Health and Health Disparities; NINDS = National Institute of Neurological Disorders and Stroke; NINR = National Institute of Nursing Research; NLM = National Library of Medicine.

Figure 2.

Health conditions studied by health literacy research grants in prevention for fiscal year 2004 to fiscal year 2017 (N = 192). Note that the percentages do not sum to 100% because some grants study more than one health condition.

Figure 3.

National Institutes of Health total award amounts and number of active awards for health literacy research grants in prevention from fiscal year 2004 to fiscal year 2017 (N = 192). The bars on the graph represent active grants in each year of the grant award period, and the line shows the award amounts for each year a grant is active.

Figure A.

National Institutes of Health institutes and centers administering health literacy research grants overall for fiscal year 2004 to 2017 (N = 368). FIC = Fogarty International Center; NCATS = National Center for Advancing Translational Sciences; NCI = National Cancer Institute; NEI = National Eye Institute; NHLBI = National Heart, Lung, and Blood Institute; NHGRI = National Human Genome Research Institute; NIA = National Institute on Aging; NIAAA = National Institute on Alcohol Abuse and Alcoholism; NIAID = National Institute of Allergy and Infectious Diseases; NIBIB = National Institute of Biomedical Imaging and Bioengineering; NICHD = Eunice Kennedy Shriver National Institute of Child Health and Human Development; NIDCD = National Institute on Deafness and Other Communication Disorders; NIDCR = National Institute of Dental and Craniofacial Research; NIDDK = National Institute of Diabetes and Digestive and Kidney Diseases; NIDA = National Institute on Drug Abuse; NIEHS = National Institute of Environmental Health Sciences; NIMH = National Institute of Mental Health; NIMHD = National Institute on Minority Health and Health Disparities; NINDS = National Institute of Neurological Disorders and Stroke; NINR = National Institute of Nursing Research; NLM = National Library of Medicine.

Figure B.

Health conditions studied by health literacy research grants overall from fiscal year 2004 to fiscal year 2017 (N = 368). Note that the percentages do not sum to 100% because some grants study more than one health condition.