Health Literacy Resources from CAPHIS Members
The following health literacy resources were offered by MLA CAPHIS members for an inquiry to the CAPHIS listserv on January 10, 2013 by Elaine Hicks: “We are training med students and undergrad public health students to be patient educators with our NN/LM outreach award. I'm seeking resources to guide them in this role with emphasis on ascertaining literacy levels and any other tips.”
Elaine R. Hicks, MS, MPH,MCHES and Kay Hogan Smith, MLS, MPH
Promoting Health Literacy through Easy-to-Read Materials: http://nnlm.gov/training/healthliteracy/. Created by Cheryl Rowan, Consumer Health Coordinator, NN/LM SCR, and taught by Terri Ottosen, Consumer Health Outreach Coordinator, NN/LM SER. It has good information on determining literacy levels.
Institute of Medicine health literacy report, 2004. The instruments typically used all have flaws (which everybody admits) and this report helps you understand what those flaws are and if they do or do not matter: http://www.iom.edu/Reports/2004/Health-Literacy-A-Prescription-to-End-Confusion.aspx
- The Medical Library Association Guide to Health Literacy (Neal-Shuman)
- Teaching Patients with Low Literacy Skills (1996, 2007) by Cecilia Conrath Doak, Leonard G. Doak and Jane H. Root
- Decoding Medical Gobbledygook – Promoting Health Literacy to Put Patients First: www.issuu.com/malpani/docs/healthliteracy
- Test of Functional Health Literacy in Adults (TOFHLA) and its Spanish equivalent, the S-TOFHLA, or short version of the English test (was used a lot because it also included a few numeracy items)
- Rapid Estimate of Adult Literacy in Medicine (REALM), and
- Wide Range Achievement Test (WRAT-Revised).
- Peabody individual Achievement Test-Revised (PIAT-R)
- Short Assessment of Health Literacy for Spanish-speaking Adults (SAHLSA)
- ETS’s Health Activities Literacy Tests (HALS--mentioned very infrequently due to the costs)
- Slosson Oral Reading Test (SORT)
- The Newest Vital Sign (2005 Barry Weiss)
Handout (Guides) of health literacy resources
- Maintained by Kay Hogan Smith, MLS, MPH, Associate Professor/Community Services Librarian UAB Lister Hill Library of the Health Sciences (attached)
- The University of Manitoba Health Sciences: What Your Patient Read and My Health In The News, for docs and patients respectively. WYPR could be a model for communicating patients' health literacy levels to doctors: http://libguides.lib.umanitoba.ca/wypr
- SueEllen Dockter, Sanford Health
- Terri Ottosen, Consumer Health Outreach Coordinator, NN/LM SER
- Cheryl Rowan, Consumer Health Coordinator, NN/LM SCR
- Emily Hurst, Technology Coordinator, , NN/LM SCR
- Nancy Schafer, AHIP, University of Florida Health Science Center Libraries
- Dr Aniruddha Malpani, MD, Medical Director, HELP – Health Education Library for People
- Kay Hogan Smith, MLS, MPH, Associate Professor/Community Services Librarian, UAB Lister Hill Library of the Health Sciences
- Catherine Arnott Smith, PhD, Associate Professor, School of Library and Information Studies, University of Wisconsin
- Mira Geffner, MLIS Candidate 2014, San Jose State University
Health Information Literacy Selected Resources 2012
Created and maintained by Kay Hogan Smith, MLS, MPH, Associate Professor/Community Services Librarian, UAB Lister Hill Library of the Health Sciences
Health and Literacy Information – General
- LINCS (Literacy Information and Communication System) – (http://lincs.ed.gov) This site, administered by the U.S. Department of Education is a “resource gathering, professional development, and national dissemination system serving the field of adult education,” providing access to high quality, evidence-based instructional materials and resources. Health literacy resources are available under the LINCS Resource Collection at http://lincs.ed.gov/professional-development/collection/search?tid%5B%5D=28&keys=&=Search.
- Harvard School of Public Health, Health Literacy Studies – (http://www.hsph.harvard.edu/healthliteracy/) A research center focused on communication and literacy skills as they relate to health outcomes. The Harvard Health Literacy Studies program is directed by Dr. Rima Rudd, a noted researcher and author in the field. The Web site contains a wealth of information on health and literacy in general (overviews), assessment tools, research, materials creation, plain language glossaries and other resources.
- National Action Plan to Improve Health Literacy – (http://www.health.gov/communication/HLActionPlan/) The U.S. Department of Health and Human Services released this plan in May 2010 with specific objectives for the various sectors (e.g., educators, healthcare providers and institutions, and government agencies) to improve the “jargon-filled language, dense writing, and complex explanations that often fill patient handouts, medical forms, health web sites, and recommendations to the public.” Includes case studies of best practices within and among the various sectors.
- AHRQ Health Literacy and Cultural Competency (http://www.ahrq.gov/browse/hlitix.htm) From the Agency for Healthcare Research and Quality (AHRQ), this “browse” page contains links to funding opportunities, health literacy measurement tools, research results, and a few consumer-oriented materials (e.g., an audio podcast, “Understanding Your Health Information,” a plain language “Going Home” discharge guide, etc.). Of particular interest are the links to the Health Literacy Universal Precautions Toolkit (see below), the Pharmacy Health Literacy Center, and the CAPHS Item Set for Addressing Health Literacy.
- North Carolina Program on Health Literacy – (http://nchealthliteracy.org/index.html) A collaborative effort centered in UNC Chapel Hill the NC Program provides information and links to literacy assessments, slide presentations, and patient education materials.
- Health Literacy Universal Precautions Toolkit – (http://www.ahrq.gov/qual/literacy/healthliteracytoolkit.pdf) Produced in April 2010 by the NC Program on Health Literacy for the Agency for Healthcare Research and Quality, this toolkit provides specific, practical guidelines for organizations to use in working to address health literacy barriers within their own institutions.
- Florida Literacy Coalition Health Literacy Resources – (http://www.floridaliteracy.org/literacy_resources__teacher_tutor__health_literacy.html) A special initiative of the Florida Literacy Coalition is focused on health literacy. Through a collaborative effort with Florida Blue Cross Blue Shield, they’re producing resources especially for ESL residents to help them navigate the U.S. health care system.
- Staying Healthy: An English Learner’s Guide to Health Care and Staying Healthy (http://www.floridaliteracy.org/FLCHLP/files/SE%20Files/CompleteSEBook.pdf) Written on a 4th- 5th grade reading level, this is an excellent guide for newcomers to the U.S. healthcare system. Also includes basic health and wellness and chronic disease management information, incorporating lots of illustrations.
- Improving Health Literacy for Older Adults: Expert Panel Report – (http://www.cdc.gov/healthliteracy/pdf/olderadults.pdf) The CDC convened a panel of experts in December 2007 to address concerns specific to older adults and health literacy. This panel included such health literacy “stars” as Dr. Rima Rudd of the Harvard Health Literacy Studies center (see above) and Michelle Eberle from the New England Regional Medical Library. In addition to covering the barriers to health communication that confound elders in particular, the report of their discussion and recommendations also addresses potential areas of research and ways to address those barriers. Among those recommendations is one calling for creative collaborations among the broad range of entities concerned with the problem (e.g., researchers, healthcare providers, families, libraries, educators, etc.) to work together to apply the knowledge already available about improving health literacy in general and in older adults in particular.
- World Health Communication Associates (WHCA) Action Guide on Health Literacy, Pt. 2, Evidence and Case Studies – (http://www.whcaonline.org/uploads/publications/WHCAhealthLiteracy-28.3.2010.pdf) This guide, published in 2010, is intended as a practical roadmap to health literacy intervention planning especially focused on systems change (as opposed to individual change). It includes health literacy initiatives from all over the world as examples, reflecting the organization’s international scope.
- National Network of Libraries of Medicine, Consumer Health Manual: Health Literacy – (http://nnlm.gov/outreach/consumer/hlthlit.html) An overview of health literacy issues and resources for consumer health librarians, including links to organizations and programs.
Health and Literacy Information Resources for Purchase– Print/Audiovisual Media
- Channing-Bete Company – (http://www.channing-bete.com/) Channing-Bete produces numerous pamphlets, brochures, guidebook, DVDs and CDs on various health topics for adults and children. The adult materials are written mostly within a range of 5thto 7th grade reading levels, the “low literacy” materials produced at a 3rd grade level. Prices depend on quantity ordered.
- ETR Associates – (http://www.etr.org/) Includes a catalog of pamphlets, flip charts, computer games, posters and DVDs addressing numerous health topics, especially those concerning children, teens and young adults. Most print materials are targeted toward a 4th to 6th grade reading level (both English and Spanish).
- Healthy Roads Media – (http://www.healthyroadsmedia.org/index.htm) A project providing health information materials in multiple formats and various languages, including not only English and Spanish but Hmong, Kurdish, Tagalog, Russian and others. Supported by the National Library of Medicine Division of Specialized Information Services.
- California Family Health Council (CFHC) Health Information & Education – (http://www.healthedworks.org/) This education and consulting organization based in California produces a wide range of print materials (pamphlets, posters, flip charts, etc.) mostly focusing on reproductive and sexual health issues. Available in numerous languages.
- Krames Patient Education – (http://kramesstaywell.com/) Over 1500 patient education products in the Krames catalog, including print, DVD and online materials on a broad range of topics, written for a 4th to 8th grade reading level. Prices vary.
- Institute for Healthcare Advancement – (http://www.iha4health.org) A California based nonprofit organization dedicated to “empowering people to better health” through materials and services for people with low literacy skills. Along with their well-known “What to Do” book series (e.g., What to Do When Your Child Gets Sick, What to Do for Senior Health, What to Do for Healthy Teeth), all written for a 3rd to 5th grade reading level, IHA also provides such services as a patient education materials review and revision service. Don’t miss the sample California advance directive for clients with low literacy skills, available free on the site in English, Spanish, Vietnamese and Chinese – an important contribution on a neglected topic!
Health Literacy Assessment Tools – Patient-Focused
- Newest Vital Sign – (http://www.pfizerhealthliteracy.com/physicians-providers/NewestVitalSign.aspx) Available free from Pfizer, this quick bilingual (English and Spanish) assessment tool can be administered in 3 minutes in a health provider’s office.
- Prevalence Calculator – (http://www.pfizerhealthliteracy.com/physicians-providers/PrevalenceCalculator.aspx) This free calculator, also available at no cost from Pfizer, provides a rough estimate of the percentage of a health care provider’s patients who might have difficulty understanding health care instructions and education materials. (Not an individual assessment tool.)
- Rapid Estimate of Adult Literacy in Medicine (REALM) – (http://www.adultmeducation.com/AssessmentTools_1.html) A word recognition test to allow for quick identification of people at risk for low literacy skills.
- Wide Range Achievement Test (WRAT-4) – Available for purchase from Wide Range Inc. ($250), this test also measures literacy based on word recognition. Considered more precise than REALM, but potentially difficult to administer in a healthcare setting. (See Doak, Chapter 3)
- Test of Functional Health Literacy in Adults (TOFHLA) – (http://www.peppercornbooks.com/catalog/information.php?info_id=5) Available for purchase from Peppercorn Books ($70), this assessment tool is based on the Cloze method of short reading passages with blanks for the insertion of a word from a suggested list of choices. TOFHLA also measures numeracy skills by the use of health-related materials such as appointment slips and pill bottle instructions. Short form available, also Spanish language version as well as English.
Health Literacy Assessment Tools – Material/Environment-Focused
- Suitability Assessment of Materials (SAM) – (http://www.hsph.harvard.edu/healthliteracy/files/doakchap1-4.pdf) Useful in healthcare settings to gauge how well patient education materials communicate their intended message. Available in Doak, Chapter 4 (link above).
- Health Literacy Advisor (HLA) – (http://www.healthliteracyinnovations.com/home) Online health communication assessment and revision tool, marketed to healthcare institutions. Available for licensing on a yearly basis.
- Health Literacy Environment of Hospitals and Health Centers – (http://www.hsph.harvard.edu/healthliteracy/files/healthliteracyenvironment.pdf) This guide from Dr. Rima Rudd (Harvard School of Public Health) includes ratings checklists for navigational signs and maps, print materials and staff. Extremely useful for outside or self-assessment of any healthcare facility.
- Pharmacy Health Literacy Assessment Tool – (http://www.ahrq.gov/qual/pharmlit/pharmlit.pdf) An AHRQ guide for pharmacies to assess their communication practices using a combination of outside auditors, staff assessment and patient focus groups. (A link to the AHRQ guide, “How to Create a Pill Card” for easy to follow medication instructions can be found at http://www.ahrq.gov/qual/pillcard/pillcard.htm.)
Health Literacy Guidelines, Glossaries, Miscellaneous Tools
- Federal Plain Language Guidelines – Guidelines for communicating in “plain language” for federal government. Includes sections on identifying the audience, organizing and writing documents using guidelines, and testing the document prior to dissemination.
- Health Literacy Online Guidelines – Guidelines from the Office of Disease Prevention and Health Promotion (ODPHP) for creating easy to understand health information web content.
- Principles of Readability – Includes details about various readability formulas.
- Plain Language Thesaurus for Health Communications – National Center for Health Marketing’s glossary of plain language substitutions for healthcare terminology.
- Simply Put: A Guide for Creating Easy-to-Understand Materials– Centers for Disease Control practical guide to creating easy-to-understand materials, both print and online. Includes instruction in design features such as organization of information and graphics which can enhance understanding beyond plain language.
- AMA Health Literacy Kit – Targeting physicians as its audience, the updated toolkit for health literacy includes the DVDs, “Health Literacy and Patient Safety: Help Patients Understand” and “Low Health Literacy: You Can’t Tell by Looking.” (Both videos are also available online, linked on this site.) The kit also includes a manual for clinicians and CME credit availability.
- United Health Communications (UHC): Addressing Health Literacy, Cultural Competency and Limited English Proficiency Free Online Course – Free course provided by UHC to improve provider/patient communications.
- Medical Library Association (MLA) Health Information Literacy Resources – Includes health information literacy tutorials, “Prescription for Information” (for healthcare providers) and “Prescription: Information!” (for librarians), developed by Gail Kouame at the Northwest Regional Medical Library. The MLA Health Information Literacy Curriculum also available here.
- CDC Health Literacy for Public Health Professionals Online Course– Training program on health literacy issues and practical measures specifically for public health professionals. Continuing education credits available.
- HHS Quick Guide to Health Literacy and Older Adults– Guide for professionals working with older adults. Includes tips for communication health information considering such issues as visual or cognitive impairments.
- Deciphering Medspeak (Plain Language) – Clear, thorough explanations of medical terms in plain language, by the Medical Library Association. Other Medspeak pamphlets available for specific conditions such as diabetes and heart disease, and in Spanish and French.
- Information Rx – Information “prescription” pads produced by American College of Physicians and National Library of Medicine, for prescribing MedlinePlus website to patients for more information about health issues.
Limited English Proficiency (LEP) Health Communication/Education Resources
- Hablamos Juntos – (http://www.hablamosjuntos.org) This organization is dedicated to developing affordable interpretation services for healthcare institutions, especially those serving large Hispanic populations. The site includes a wealth of information on the use of universal symbols in healthcare at http://www.hablamosjuntos.org/signage/default.index.asp.
- EthnoMed – (http://ethnomed.org/) Cross-cultural communication in healthcare, including communication aids for providers (http://ethnomed.org/patient-education/communication/communication) and easy to read materials in multiple languages on various health topics. (Note: In 2009 24 Languages Project from Utah Department of Health provided their content to EthnoMed before shutting down their own site.)
- Migrant Health Promotion – (http://www.migranthealth.org/) Site includes downloadable health promotion materials, evaluated for literacy level and cultural competency, especially for health educators (promotoras) in Latino farmworker communities.
- DiversityRx – (http://www.diversityrx.org/) An information clearinghouse on language and cultural needs of minorities, immigrants and other diverse groups seeking health care. (Watch for – and participate in – a new online database of resources for cross-cultural health care.)
- Health Information Translations – (http://www.healthinfotranslations.com/) A collaborative health education project for LEP patients. Health information materials (and some audio podcasts) using plain language available in multiple languages, including American Sign Language.
Organizations and Funding Agencies
- AHRQ – see above
- Pfizer Clear Health Communication Initiative – (http://www.pfizerhealthliteracy.com/) This Pfizer company foundation supports community-based interventions, research projects, conferences, and other activities to increase awareness of the problem as well as creative ways to address it. Provides the “Newest Vital Sign” assessment tool, communication checklists for providers, and other tools on the site. Pfizer provides operating support to the “Ask Me 3” initiative (http://www.npsf.org/askme3/).
- Office of Vocational and Adult Education, Division of Adult Education and Literacy – (http://www2.ed.gov/about/offices/list/ovae/pi/AdultEd/index.html) An office of the U.S. Department of Education, the DAEL promotes adult basic skills education programs and provides funds to states for adult education and literacy programs. (The states then distribute these funds to eligible community-based organizations and other entities to provide the programming.)
Other Web Sites
- MedlinePlus – (http://www.medlineplus.gov) Besides offering health information videos and interactive tutorials for consumers, this service of the National Library of Medicine also offers links to identifiable “easy to read” information (accumulated at http://www.nlm.nih.gov/medlineplus/all_easytoread.html) as well as information in multiple languages.
- NIH SeniorHealth – (http://nihseniorhealth.gov/index.html) Produced by the National Institute on Aging, this easy to use web site, featuring large text and other features to make it easier for elders to view, also provides quality-filtered health information on various topics. Site includes videos, an easy-to-implement text reader, and a “Trainer’s Toolkit” for teaching older adults how to search online for health information.