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| Current Bibliographies in Medicine | |
Understanding Health Literacy and its Barriers (CBM 2004-1)
Current Bibliographies in Medicine 2004-1
Understanding Health Literacy and its Barriers
| Table of Contents Series Note PDF Version of This CBM Sample Citations Introduction Bibliography: Comprehension, Readability, Usability, and Other Assessment Economic and Other Access Barriers Internet, E-Health, and Informatics Language and Other Communication Barriers Materials Development and Strategies Professional-Patient Communication Risk Communication and Comprehension Toolkits, Handbooks, Audiovisuals |
January 1998 through November 2003, plus selected earier and later citations 651 Citations Prepared by 2004 May U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Library of Medicine Each bibliography in the Current Bibliographies in Medicine (CBM) series covers a distinct subject area of biomedicine and fulfills a current awareness function. Online databases and the Internet are the primary sources for citations in these bibliographies. Relevance to the subject is the only criterion for inclusion of works in a CBM; the format, ownership, or location of the material are not considered. Other publications in the Current Bibliographies in Medicine series are available through the Library's World Wide Web site at http://www.nlm.nih.gov/pubs/resources.html Comments and suggestions on this series may be addressed to: Karen Patrias, Editor PubMed®, LocatorPlus®, and the NLM Gateway The Library offers three interfaces to its databases; all are available on the World Wide Web. PubMed provides access primarily to the journal literature; LocatorPlus is an online catalog of the books, journal titles, and audiovisuals held by the Library; and the NLM Gateway serves as an entry point for a variety of databases and other Library products. Further information on PubMed, LocatorPlus, and the NLM Gateway may be found at http://www.nlm.nih.gov/ The Portable Document Format (PDF) version of this bibliography will soon be available from http://www.nlm.nih.gov/pubs/cbm/healthliteracybarriers.pdf. Note that PDF documents require the use of the Adobe® Acrobat® Reader, which may be downloaded from the Adobe Web site at no charge. Citations are formatted according to the rules established for Index Medicus®*. Sample journal, monograph, and Web site citations appear below. An availability statement follows many journal article citations. This statement contains an Internet hyperlink to the citation in the NLM PubMed retrieval system. The PubMed record includes an abstract for most articles and may also provide a link to the publisher's Internet site. Journal Article: Roter DL, Rudd RE, Comings J. Patient literacy. A barrier to quality of care. J Gen Intern Med. 1998 Dec;13(12)850-1. Available from PubMed; PMID 9844085 Order, with separating punctuation: Monograph: Thompson TL, Dorsey AM, Miller KI, Parrott R, editors. Handbook of health communication. Mahwah (NJ) Lawrence Erlbaum Associates; 2003. 753 p.Order, with separating punctuation: Web Site: Health Literacy [Internet]. Mount Pleasant (MI): Michigan Adult Learning & Technology Center; [modified 2003 Apr 16; cited 2004 Apr 30]. Available from: http://www.malt.cmich.edu/healthlit.htm Order, with separating punctuation: * For details of the formats used for references, see
the following publications: |
Understanding Health Literacy and its Barriers
What is health literacy? The current operational definition used in Healthy People 2010 is: "the degree to which individuals have the capacity to obtain, process and understand basic health information and services for appropriate health decisions."1 Health literacy is the means by which holders of knowledge can make that knowledge understandable and usable for the receiver.
In the five years since the National Library of Medicine released the first Current Bibliographies in Medicine (CBM) on this topic2, national interest in health literacy has increased. A growing number of disciplines are contributing new knowledge about the implications of literacy challenges and the disproportionate impact of those challenges on some groups and populations. So much had been added to the literature, it was clear the time had come for another bibliography.
At the core of this accelerated interest is the growing realization that more than 90 million Americans struggle to understand basic health information.3 For example, one research study in a public hospital found that one-third of English-speaking patients could not read basic health materials. More than a quarter could not read appointment slips and forty-two percent did not understand labels on prescription bottles.4 The 2000 census counted 20 million people who speak poor English, 10 million who speak no English. The White House Office of Management and Budget in a 2002 report estimated the number of patient encounters across language barriers each year at 66 million.5
Ascertaining public need, using appropriate communication strategies and tactics, ensuring access and usability, identifying and removing obstacles within systems, and continuously evaluating the efforts to ensure improvement, are all competencies required to achieve health literacy. The Institute of Medicine of the National Academy of Sciences emphasizes the significance of these competencies saying, "Health literacy is where the expectations, preferences and skills of individuals seeking health information meet the expectations, preferences and skills of individuals providing information. Health literacy arises from a convergence of education, health services, and social and cultural factors, and brings together research and practice from diverse fields."6
Low or limited health literacy might best be described as a weakness in connecting-or a complete failure to connect-the audience with appropriate health information materials, services, or resources. Addressing this chasm of communication, Federal public health leaders, including the Secretary of the U.S. Department of Health and Human Services and the Surgeon General of the United States, are currently calling for national action on health literacy. The Secretary emphasized, "The health of our country depends on our understanding of basic health information in order to lead a healthy life." 7 Echoing the same theme, the Surgeon General highlighted health literacy needs and proposed specific steps to capitalize on the Healthy People 2010 initiative on health literacy. He noted, The ability to access, understand, and use health-related information and services is critical to the success of my three priorities: improving emergency preparedness, and eliminating health disparities, and preventing disease." 8
Resources for these three foci are within this bibliography. Candidate citations were identified primarily by searching online databases and the Internet. We selected only English language material and generally excluded letters, editorials, or literature published before 1998, unless they provide an important historical context. The selected citations are from a variety of disciplines to highlight resources available to medical, health, education, and communication professionals as they tackle this important national challenge. Primarily, this bibliography includes citations from literacy literature only when in a health literacy context. In this context, selections are from health education, communication (interpersonal, institutional, systems, interactive, listening, accessibility), risk, compliance, informed consent, professional-patient interaction, cultural competence, and health disparities research.
Selections are also included from literature on reading, numeracy, contextualization, visual and auditory comprehension, accessibility, translation and interpreter use, the navigation of medical systems by individuals with cultural differences or literacy challenges, materials development or materials evaluation for various cultural groups or those with varying health literacy challenges, and mental health literacy. The Web sites were selected using the National Cancer Institute evaluation criteria for content 9 and usability.10,
We urge the reader to keep two caveats in mind when utilizing this bibliography. First, within it are many attempts to quantify health literacy by sets of skills or attributes in an effort to find a universal formula or "recipe" for a more universal solution to the problem of low health literacy. These attempts to find a universal solution may seem straightforward until the standards are applied to real circumstances. For example, there is a major difference between "a sixth grade reading level" applied to an actual sixth grade child who has limited life experience and "a sixth grade reading level" used as a measure of vocabulary and comprehension skill of adult who has much more life experience upon which to draw. Secondly, within the bibliography are articles describing differing approaches to evaluation of specific materials in specific settings with specific audiences that may or may not have implications for other materials, settings, or audiences.
This bibliography is meant to complement the Health Literacy CBM done earlier. Whereas that bibliography sought to define the problem and examine potential strategies, this one examines some of the barriers that may need to be addressed when designing such strategies. We hope that it will stimulate additional interest in research related to health literacy. We also hope that an increase in research and a broader understanding of research results will provide a foundation for disease prevention and health promotion for the 90 million Americans who struggle with challenges of literacy each day.
Marin P. Allen, Ph.D.
Communication Director
National Institute on Deafness and Other Communication
Disorders
Alice M. Horowitz, Ph.D.
National Institute on Dental and Craniofacial Research
May 2004
1. Healthy people 2010. 2nd ed. Washington (DC): Department of Health and Human Services (US); 2000 Nov. 2 Vols.
2. Selden C, Zorn M, Ratzan SC, Parker RM, compilers. Health literacy [bibliography on the Internet]. Bethesda (MD): National Library of Medicine; 2000 Feb [cited 2004 May 8]. Available from: http://www.nlm.nih.gov/archive//20061214/pubs/cbm/hliteracy.html
3. Kirsch IS, Jungeblut A, Jenkins L, Kolstad A. Adult literacy in America: a first look at the findings of the National Adult Literacy Survey. 2nd ed. Washington (DC): Department of Education (US), Office of Educational Research and Improvement; 1993 Sep.
4. Williams MV, Parker RM, Baker DW, Parikh NS, Pitkin K, Coates WC, Nurss JR. Inadequate functional health literacy among patients at two public hospitals. JAMA. 1995 Dec 6;274(21):1677-82.
5. Newman B. Doctors' orders can get lost in translation for immigrants: physicians question the cost and need of breaking-down the language barrier. Wall Street Journal. 2003 Jan 9:1.
6. Health Literacy [Internet]. Washington (DC): National Academy of Sciences (US), Institute of Medicine; c2004 [cited 2004 Apr 30]. Available from: http://www.iom.edu/project.asp?id=3827
7. Improving health literacy. HHS Week Rep 2003 Sep 29-2003 Oct 5.
8. U.S. Surgeon General promotes health literacy. HHS Week Rep. 2003 Jun 16-2003 Jun 22.
9. How to evaluate health information on the Internet: questions and answers [Internet]. Bethesda (MD): National Cancer Institute (US); [reviewed 2003 Dec 11; cited 2004 May 8]. Available from: http://cis.nci.nih.gov/fact/2_10.htm
10. Usability.gov [Internet]. Washington (DC): Department of health and Human Services (US); [updated 2004 Apr 15; cited 2004 May 8]. Available from: http://www.usability.gov/
This publication is not copyrighted and may be freely reproduced. However any reproductions of this bibliography, in whole or in part, should include all credits. If you wish to cite this bibliography, the correct format is:
Zorn, Marcia; Allen, Marin P.; Horowitz, Alice M., compilers. Understanding health literacy and its barriers [bibliography on the Internet]. Bethesda (MD): National Library of Medicine (US); 2004 May [cited YYYY MMM DD]. Available from: http://www.nlm.nih.gov/pubs/cbm/healthliteracybarriers.html
BACKGROUND
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American Medical Association, Council on Scientific Affairs Ad Hoc Committee on Health Literacy. Health literacy: report of the Council on Scientific Affairs. JAMA. 1999 Feb 10;281(6):552-7. Comment in: JAMA. 1999 Aug 11;282(6):525-6; discussion 526-7; JAMA. 1999 Aug 11;282(6):526-7. Available from: PubMed; PMID 10022112 Also available from: http://jama.ama-assn.org/cgi/content/full/281/6/552
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Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV. Shame and health literacy: the unspoken connection. Patient Educ Couns. 1996 Jan;27(1):33-9. Available from: PubMed; PMID 8788747
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AGE FACTORS
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COMPREHENSION, READABILITY,
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CULTURAL CONSIDERATIONS
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ECONOMIC AND OTHER ACCESS BARRIERS
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