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This article was downloaded by: [North West University]On: 21 December 2014, At: 17:45Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
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Health Care Is For the Literate:Improving Health One Step at a TimeJanet M. Schneider aa Consultant, Department of Veterans Affairs , VA Library Network ,Lakeland , Virginia , USAPublished online: 29 May 2012.
To cite this article: Janet M. Schneider (2012) Health Care Is For the Literate: ImprovingHealth One Step at a Time, Journal of Consumer Health On the Internet, 16:2, 263-275, DOI:10.1080/15398285.2012.674001
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Journal of Consumer Health on the Internet, 16(2):263–275, 2012ISSN: 1539-8285 print/1539-8293 onlineDOI: 10.1080/15398285.2012.674001
WEBHEALTH TOPICS
Priscilla L. Stephenson and
Mary Virginia Taylor, Column Editors
Health Care Is For the Literate: Improving Health One Step at a Time
JaNet M. SchNeIDerConsultant, Department of Veterans Affairs, VA Library Network,
Lakeland, Virginia, USA
The health care system favors the literate. People who know how to gain access, complete myriad and formidable forms, and understand the information they are given have a much higher probability of receiving quality health care, following self-care regimens accurately, and maintaining their health. Improving health literacy has become a national imperative, as evidenced by recent major health policy changes and reforms. A cultural shift involving administrators, clini-cians, and consumers is necessary for equalizing health care for all citizens and can be facilitated through the numerous informational and educational sites now available on the Internet.
KEYWORDS Health Literacy
INtrODUctION
an individual’s health literacy status, even from moment to moment, can be difficult to identify. the most well educated, highly literate person can
this article not subject to US copyright law.comments and suggestions should be sent to the column editors: Priscilla L. Stephenson
([email protected]) and Mary Virginia taylor ([email protected]).address correspondence to Janet M. Schneider, VaLNet consultant, 2821 Knights Station
road, Lakeland, FL 33810. e-mail: [email protected]
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become completely illiterate in a health care environment due to illness, pain, fear, wardrobe malfunctions (flapping hospital gowns), and unfamiliar medical terminology (Nielsen-Bohlman 2004). Declines in cognitive function and visual and auditory acuity due to aging serve to lower literacy levels as well (Berkman et al. 2011). the vast amounts of information dumped on a patient can blur the ability of that patient to both discern what is truly impor-tant as well as translate that information into appropriate decisions and actions.
health literacy has become a matter of major health policy and reform. the Joint commission, an independent, not-for-profit organization that accredits and certifies health care organizations and programs in the United States, has continued to strengthen its patient-centered communication stan-dards, calling communication a cornerstone of patient safety and quality care. Standard rI.01.01.13 of The Joint Commission Comprehensive Accreditation Manual for Hospitals mandates that the hospital “respects the patient’s right to receive information in a manner he or she understands” (Comprehensive Accreditation Manual 2010). healthy People 2020 targets health communication and information technology with thirteen goals to improve the health literacy of the population, measured by the number of persons who report that their health care providers talk and listen to them in a way they can understand, show respect for what they have to say, and involve them in decisions about their health care (Health Communication 2011).
a collaborative approach by health care administrators, clinicians, and patients is needed to form an open, safe dialog that fosters an environment in which patients receive the information they both need and want in an understandable format. the greatest challenge may well be to change the culture of health care, from the predominantly paternalistic, fragmented system of today to a patient-centered, holistic approach that enhances com-munication and ultimately results in better care. It is ironic that economics and mandated standards, rather than humanity and ethics, may well ensure that improvements are made in this area.
health care administrators must recognize the necessity for provid-ing patient-centered care, which builds health literacy concepts into all levels of service. this includes plain language not only in all written documents but also in oral interactions (Wynia and Osborn 2010). Internet pages must follow set guidelines for accessibility and usability. the physi-cal environment of hospitals and large health care centers should reflect consideration of literacy issues in signage and navigational aids. Staff training should be mandatory on health literacy practices, with demon-strated competencies and proficiencies. clinicians must have the capacity to evaluate their own skills, challenges, and barriers and learn how to elicit and maintain thoughtful conversation with their patients (Bickmore et al. 2010). Oral communication is frequently just as strong a barrier as
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written; using plain language is critical, and those with strong accents or dialects may be completely incomprehensible to their patients (roter 2011). Patients must be given opportunities to gain assistance, when needed, to acquire those skills needed to talk to providers, navigate the health care system, recognize quality care, know how to prepare for a clinical visit, and share in their care through partnering with their provid-ers (Smith et al. 2009).
Many valuable websites have already been described in the literature, with more cropping up every day. the sites selected for this webliography provide good content for a variety of needs and information seekers, includ-ing administrators, trainers, healthcare providers and consumers.
tOOLKItS
Agency for Healthcare Research and Quality: Health Literacy Universal Precautions Toolkit<http://www.ahrq.gov/qual/literacy/>
the agency for healthcare research and Quality commissioned the University of North carolina at chapel hill to develop and test this toolkit, which offers primary care practices a way to assess their services for health literacy con-siderations. a quick start guide, implementation steps, twenty tools, and vari-ous sample forms to assist clinicians in improving communication practices are provided.
Centers for Medicare and Medicaid Services: Toolkit for Making Written Material Clear and Effective<http://www.cms.gov/WrittenMaterialsToolkit>
An eleven-part toolkit to develop health-literate materials is available from the Centers for Medicare and Medicaid Services (CMS). It is designed to help authors make their written material easier for people to understand and use. The Toolkit provides:
• Tips for taking a reader-centered approach to developing and testing materials.
• Guidelines for writing, graphic design, and culturally appropriate translation from English into other languages, with discussion and examples that show how to use the guidelines.
• Step-by-step guidance on how to test materials with readers, emphasizing quick and low-cost ways to get the most meaningful feedback directly from readers and use it to make improvements.
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• Cautions about the uses and misuses of readability formulas to assess written material.
• Things to know if authors are writing material for older adults.
Minnesota Health Literacy Partnership: Health Literacy Program for Minnesota Seniors (HeLP MN Seniors) Evidence-Based Workshop Program<http://www.healthliteracymn.org/resources/help-mn-seniors>
the University of Minnesota health Sciences Libraries and the Minnesota health Literacy Partnership teamed up to create an evidence-based program to increase the literacy skills of older adults. the site provides a program guide, assessment and evaluation materials, PowerPoint presentations, hand-outs, promotional flyers, and pre- and post-tests for those wishing to repli-cate the workshop at local levels.
National Business Group on Health: Communication Toolkit: Using Information to Get High Quality Care<http://communicationtoolkit.airprojects.org/>
the california healthcare Foundation and the National Business Group on health have compiled a communications toolkit to help businesses teach their employees to find quality health care, make wise health care decisions, and be informed health care consumers. While aimed toward maintaining a healthy workforce, the materials are valid for other populations as well and can be tailored for specific needs.
National Institute for Literacy: Research Based Health Literacy and Instruction Guide<http://healthliteracynetwork.org/materials/>
this eighteen-part health literacy guide from the National Institute for Literacy meets both the need of adults to enhance their literacy skills as well as their need to navigate the health care system, in order to achieve better health care for themselves and their families. chapters integrate literacy skills and practice with pertinent health information. In a scientifically based research environ-ment, use of these materials led to an increase in participants’ literacy scores on standardized tests used to validate literacy gains. equally important for these adult learners, is that they significantly increased health literacy and knowledge.
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aDMINIStratIVe/GeNeraL INFOrMatION SIteS
Agency for Healthcare Quality and Research: Health Literacy Interventions and Outcomes: An Updated Systematic Review<http://www.ahrq.gov/clinic/tp/lituptp.htm>
the agency for healthcare Quality and research (ahrQ) continues to provide great resources for health literacy. Its 2011 update is a systematic review of health care service use, health outcomes related to differences in health literacy levels, and interventions designed to improve these out-comes for individuals with low health literacy. Disparities in health out-comes and effectiveness of interventions among different sociodemographic groups are examined. Future research priorities include justifying appro-priate cutoffs for health literacy levels prior to conducting studies, devel-oping tools that measure additional related skills, particularly oral (spoken) health literacy, and examining mediators and moderators of the effect of health literacy.
Centers for Disease Control and Prevention: Health Literacy: Accurate, Accessible, and Actionable Health Information for All<http://www.cdc.gov/healthliteracy/>
the centers for Disease control and Prevention provides information and tools to improve health literacy for public health. these resources are for all organizations that interact and communicate with people about health, including public health departments, health care providers and facilities, health plans, government agencies, nonprofit/community and advocacy organizations, childcare and schools, the media, and health-related industries.
Centers for Disease Control and Prevention’s National Center for Health Marketing. The Plain Language Thesaurus<http://depts.washington.edu/respcare/public/info/Plain_Language_Thesaurus_for_Health_Communications.pdf>
the aim of the thesaurus, compiled by the centers for Disease control and Prevention’s National center for health Marketing, is to help make health information clear and easy to understand. It offers plain language equiva-lents to often-used medical terms, phrases, and references.
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Food and Drug Administration: Communicating Risks and Benefits: An Evidence-Based User’s Guide<http://www.fda.gov/downloads/AboutFDA/ReportsManualsForms/Reports/UCM268069.pdf>
the Food and Drug administration’s risk communication advisory committee released this online book in august 2011. Key topics in risk com-munications are covered; the content goes beyond basic reading issues to include other factors that influence health literacy such as communication design and the effect of perceptions and emotions on interactions. Implementation strategies are included, as well as advice on how organiza-tions can test the quality of their communications.
Healthy People 2020<http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicId=18>
the Office of Disease Prevention and health Promotion, under the U.S. Government’s health and human Services Department, developed the healthy People web site to provide “science-based, 10-year national objec-tives for improving the health of all americans.” the 2020 summary and objectives specifically targets the need to improve the health literacy of the population, increase the proportion of persons who report that their health care providers had satisfactory communication skills, and increase the use of appropriate health information technology through its health communication and health information technology objectives.
Institute of Medicine: Health Literacy Implications for Health Care Reform: Workshop Summary<http://iom.edu/Reports/2011/Health-Literacy-Implications-for-Health-Care-Reform.aspx>
the Institute of Medicine’s July 2011 report looks at opportunities to advance health literacy in association with the implementation of health care reform, since many of the newly eligible people who could benefit from the Patient Protection and affordable care act (aca) legislation may be unable to take advantage of new health care options because of their low literacy status. Ways to improve health literacy along with efforts to expand coverage, provide equitable care, and improve health care quality are examined.
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Taubman Health Sciences Library, University of Michigan: Plain Language Medical Dictionary Widget<http://www.lib.umich.edu/plain-language-dictionary>
the librarians at the taubman health Sciences Library at the University of Michigan have developed a widget that can be placed on web sites, allowing those wishing to translate medical terminology into plain language to select the desired medical term from the drop-down box; a thesaurus of alternative terms is then provided.
U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion: Health Literacy Online: A Guide to Writing and Designing Easy-to-Use Health Web Sites<http://www.health.gov/healthliteracyonline/>
More americans are using the Internet to find health information than ever before. however, the Internet poses major challenges for those with limited literacy or computer skills. the Office of Disease Prevention and health Promotion (ODPhP) presents health Literacy Online, a how-to guide for web managers and professionals. It includes research-based recommenda-tions and examples to help organizations create clear, user-friendly health web sites (see Figure 1).
FIGURE 1 health literacy online: a guide to writing and designing easy-to-use health web sites. (color figure available online.)
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U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion: National Action Plan to Improve Health Literacy<http://www.health.gov/communication/HLActionPlan/pdf/Health_Literacy_Action_Plan.pdf>
In 2007 and 2008, the Surgeon General’s Workshop on Improving health Literacy held a series of town hall meetings across the United States to gather feedback from stakeholders before devising a national plan to confront the issue. the result is this report, which provides seven goals and multiple strat-egies to improve the national health literacy rate.
Usability.gov: Your Guide for Developing Usable and Useful Web Sites <http://www.usability.gov/>
Usability.gov is a one-stop source for government web designers to learn how to make web sites more readable, usable, useful, and accessible. The site addresses a broad range of factors that go into web design and development. The site can help users to:
• Plan and design usable sites by collecting data on what users need • Develop prototypes • Conduct usability tests and write up results • Measure trends and demographics
the Usability Basics section defines usability, why it is important, how much it costs, measurement, and other basic information. the Usability Methods section includes various user-centered design methods that can help improve the usability of a site.
cLINIcIaN-FOcUSeD WeB SIteS
U.S. Department of Health and Human Services, Health Resources and Services Administration: Unified Health Communication 101: Addressing Health Literacy, Cultural Competency, and Limited English Proficiency<http://www.hrsa.gov/healthliteracy/default.htm>
the health resources and Services administration (hrSa) developed this free online course in partnership with several federal agencies, including the National Library of Medicine. Users may choose to take the course for five credits (ceU/ce, cheS, cMe, cNe) or not for credit. the target audience
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includes physicians, nurses, dentists, pharmacists, physician assistants, hos-pital and health care administrators, health educators, community health and outreach workers, social workers, librarians, academic faculty, and other staff such as receptionists and office management. It is also helpful for consumers who want to improve their ability to talk with their health care providers, understand health information, and access care (see Figure 2).
University of Michigan Library: Improving Health Literacy: Training Resources <http://guides.lib.umich.edu/healthliteracy>
the University of Michigan has created a guide for health professionals who want to improve communication with patients and others and teach them-selves or colleagues about health literacy and clear communication. Its focus is on training materials, assessment tools, numeracy, and plain language.
cONSUMer-FOcUSeD WeB SIteS
Demand to Understand<http://www.demandtounderstand.org/>
Sponsored by the center for Plain Language, this site supports the under-standing that everyone deserves and has a right to clear language in
FIGURE 2 Unified health communication 101: addressing health literacy, cultural compe-tency, and limited english proficiency. (color figure available online.)
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documents and other communications that are important to their safety, financial security, and personal and environmental health. advice and cau-tions are provided to consumers needing to sign contracts and other busi-ness, financial, and health care documents.
Florida Literacy Coalition: Staying Healthy: An English Learner’s Guide to Health Care and Healthy Living<http://www.floridaliteracy.org/literacy_resources__teacher_tutor__health_literacy.html>
Developed by the Florida Literacy coalition, the site features a student resource book to encourage students to seek additional information and assistance from expert health care professionals, locate free and low-cost health care facilities, engage in open communication, and take on a more active role in their own health care management and healthy lifestyle. an accompanying teacher’s guide includes ideas for lessons, activities, and ways to facilitate learning.
Low-literate consumers are not the only ones who may learn more effectively from videos. Many sites feature podcasts and streaming media to convey their messages. While not new, these sites carry important content to supplement other resources.
ONLINe VIDeOS FOr PrOFeSSIONaLS
AMA Foundation’s Health Literacy Video: You Can’t Tell by Looking<http://www.ama-assn.org/ama/pub/about-ama/ama-foundation/our-programs/public-health/health-literacy-program/health-literacy-video.page>
the twenty-minute video found here is included in the aMa’s health Literacy Introductory Kit and can be viewed in its entirety at this link. It is designed to raise awareness and spark discussion about low health literacy as well as portray the extent of the issue in an average medical practice.
American College of Physicians Foundation Health Literacy < http://www.acpfoundation.org/materials-and-guides/video/videos-for-patients/health-literacy-video.html>
the american college of Physicians provides a six and one-half minute video that combines interviews with actual patients, commentary from prac-
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ticing physicians, and health communication statistics to illustrate the chal-lenges of low literacy to clinicians and patients.
In Plain Language—Rima Rudd<http://www.hsph.harvard.edu/healthliteracy/overview/>
In Plain Language was produced by Dr. rima rudd and Dr. William DeJong, with a team of health literacy studies professionals and researchers. this fifteen-minute video/DVD was developed for medical and public health pro-fessionals who are interested in learning about adult literacy in the United States and implications for medicine and public health. a PowerPoint pre-sentation is also available.
ONLINe VIDeOS FOr PatIeNtS
Agency for Healthcare Research and Quality: Featured Videos and Podcasts<http://www.ahrq.gov/consumer/podsvids.html#h1>
ahrQ has a growing list of videos and podcasts designed to help patients take part in their health care experiences (see Figure 3).
FIGURE 3 agency for healthcare research and Quality: Featured videos and podcasts.. (color figure available online.)
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Healthy Roads Media<http://www.healthyroadsmedia.org/>
this site is a good place to find free health education materials in a number of languages and a variety of formats, including audio, video, and print. Many of the materials are public domain.
Health Central: Heart Disease Videos<http://www.healthcentral.com/heart-disease/videos.html?ic=4025>
More than eighty videos on heart disease, stroke, diabetes, and cardiac anat-omy are available. animations and illustrations of cardiac conditions, stroke, and sleep apnea can be found at<http://www.heartinfo.org/ms/nav/anima-tion/main.html>.
Icyou: Healthcare Video on Demand<http://www.icyou.com/>
this site is a health version of Youtube. Since content is not peer-reviewed, quality and authority must be evaluated on a program-by-program basis.
NIH Senior Health<http://nihseniorhealth.gov/videolist.html>
Senior health has short online videos in twenty subject fields on topics per-tinent to older people and their care givers.
MedlinePlus: Interactive Health Tutorials<http://www.nlm.nih.gov/medlineplus/tutorial.html>
MedlinePlus contains animated tutorials that explain procedures or conditions in easy-to-read language. Users can listen to a tutorial or print a written version of the information. Diseases and conditions, tests and diagnostic procedures, sur-gery and treatment procedures, and prevention and wellness topics are included.
MedlinePlus: Videos of Surgical Procedures<http://www.nlm.nih.gov/medlineplus/surgeryvideos.html>
this portion of MedlinePlus provides links to pre-recorded webcasts of sur-gical procedures. these are actual operations performed at medical centers
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in the United States since January 2004. caution should be used when view-ing due to the “graphic” content.
Stanford Hospital and Clinics: Stanford Health Library<http://healthlibrary.stanford.edu/videolibrary/index.html>
a variety of programs featuring prominent doctors presenting the latest health research are grouped under broad headings such as cancer Supportive care, health and Society, Women’s health, and health Matters. Most titles are thirty to sixty minutes long.
cONcLUSION
as national policies evolve and additional stresses are placed on the health care system, health literacy will continue to grow in importance. consumers, clinicians, and administrators all have a major role in the process and should use the wealth of resources to assist others in their quests for accessible, quality health care.
reFereNceS
Berkman, Nancy D., Stacey L. Sheridan, Katrina e. Donahue, David J. halpern, and Karen crotty. 2011. Low health literacy and health outcomes: an updated sys-tematic review. Annals of Internal Medicine 155, no. 2: 97–107.
Bickmore, timothy W., Laura M. Pfeifer, Donna Byron, Shaula Forsythe, Lori e. henault, Brian W. Jack, rebecca Silliman, and Michael K. Paasche-Orlow. 2010. Usability of conversational agents by patients with inadequate health literacy: evidence from two clinical trials. Journal of Health Communication 15, suppl 2: 197-210.
Comprehensive Accreditation Manual for Hospitals. 2010. Oakbridge terrace, IL: Joint commission.
Health communication and Health Information Technology - Healthy People. 2011. <http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=18> (accessed august 22, 2011)
Nielsen-Bohlman, L., Institute of Medicine, and committee on health & Literacy. 2004. Health literacy: A prescription to end confusion. Washington, Dc: National academies Press.
roter, Debra L. 2011. Oral literacy demand of health care communication: challenges and solutions. Nursing Outlook 59, no. 2: 79–84.
Smith, Sian K., ann Dixon, Lyndal trevena, Don Nutbeam, and Kirsten J.Mccaffery. 2009. exploring patient involvement in healthcare decision making across dif-ferent education and functional health literacy groups. Social Science & Medicine 69, no. 12: 1805–12.
Wynia, Matthew K., and chandra Y. Osborn. 2010. health literacy and communica-tion quality in health care organizations. Journal of Health Communication 15, suppl 2: 102–15.
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