By Kristen L. Dascoli, Grant Development Director, Oncology, Annenberg Center for Health Sciences at Eisenhower
These phrases have buzzed around the continuing professional development (CPD) community for years, especially when it comes to discussions on best practices in developing educational strategies that affect health outcomes. But are we doing enough to embrace and develop education that is truly effective, accessible and meaningful to patients?
The short answer: We could do more.
What We Know
The U.S. Department of Health and Human Services defines health literacy as “the degree to which an individual has the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.”[i] Health literacy has become an especially hot topic owing to changes in the U.S. healthcare system and calls to action for the better engagement of patients in their care plans. It is not enough for patients to be able to understand the health information that they read and hear; patients need to use that information to make informed care decisions, to manage their care and to navigate the healthcare system.[ii]
In 2006, the National Assessment of Adult Literacy (NAAL) published data on a nationwide literacy survey.[iii] The survey categorized the health literacy of 19,714 adult participants into four performance levels: Below Basic, Basic, Intermediate and Proficient. Even when excluding data from patients who were non-English speakers and from patients with mental or cognitive disabilities, the survey found that 22 percent of participants had “basic” health literacy and 14 percent of participants had “below basic” health literacy, as defined by the NAAL. For example, these participants were unable to accurately determine the time to take a medication based on information found on a pill bottle. Only 12 percent of all survey participants were “proficient” in health literacy, according to the NAAL.[iv]
Low health literacy is associated with poor overall health, poor management of chronic diseases, an increased risk for hospitalizations, higher rates of emergency-department use and an increased risk for mortality.[v],[vi],[vii],[viii],[ix],[x] Patients with low literacy are less likely to engage in shared decision-making,[xi] and healthcare professionals (HCPs) may wrongfully attribute signs commonly associated with low health literacy as patients’ lack of motivation in improving health or engaging in self-care.[xii]
Signs of Low Health Literacy[xiii]
A patient may have low health literacy if the patient:
- Often misses appointments
- Does not fill out or complete patient forms
- Is nonadherent to treatment plan
- Has a poor recall of medications, dosing, and/or treatment expectations
- Identifies medications only by looking at the actual pill, package, etc.
- Is not actively engaged in health-related conversations
- Does not ask questions
- Does not follow up on recommended tests and/or referrals
Still, HCPs only occasionally assess whether patients understand the instructions given to them.[xiv] Experts suggest a variety of factors may impede assessment, including: language barriers; the overabundance of health literacy measurement tools; screening tools that aren’t universal or suitable for certain departments; and HCPs’ overconfidence in addressing health literacy issues.[xv],[xvi],[xvii],[xviii],[xix],[xx],[xxi] Even when asked whether they understand instructions, patients are often reluctant and embarrassed to admit confusion.[xxii]
What We Can Do
Create a level of awareness among our HCP learners that health literacy is impeding their patients’ health outcomes. Provide education and training on health literacy and evidence-based counseling methods that assess and improve patient recall, memory and comprehension. Health literacy assessment tools that can be conducted at point-of-care in less than a few minutes include the Rapid Estimate of Adult Literacy in Medicine (REALM)[xxiii], Single Item Literacy Screener[xxiv] and Newest Vital Sign (NVS).[xxv] The Teach-Back method[xxvi] and the Ask Me 3® method[xxvii] are simple, quick counseling strategies that address comprehension concerns without judgement or embarrassment. (Information on the Teach-Back Method can be found here. Information on the Ask Me 3® method can be found here.) These tools can be easily incorporated into CE/CME activities, particularly with case studies and patient simulations. Additionally, we should work with faculty to develop content that promotes “plain language” discussions with patients; this is a proven communication style that strips away medical jargon and terminology and uses everyday examples to aid in patient comprehension.[xxviii],[xxix],[xxx]
Reading Levels and Comprehension Levels
What We Know
Regardless of health literacy levels, patients recall only about half (49 percent) of the decisions and recommendations made during a healthcare visit.[xxxi] Enduring patient-targeted materials are used frequently to improve patient recall and to reinforce care instructions. However, studies show that, regardless of the disease state, health topic or delivery format, these materials are consistently written at reading and comprehension levels that far exceed patients’ capabilities.[xxxii],[xxxiii],[xxxiv],[xxxv],[xxxvi],[xxxvii],[xxxviii],[xxxix],[xl]
Many assume that reading levels and comprehension levels are the same as the person’s last completed school year, but this is often incorrect. Although the majority of U.S. adults have obtained at least a high school diploma,[xli] the reading level of the average US adult is between 7th and 8th grade.[xlii]
The National Institutes of Health recommend that materials intended for patients be written between a 7th and 8th grade reading level,[xliii] while the American Medical Association recommend that these materials be written at a 6th grade reading level[xliv] and the Joint Commission recommends that these materials be written at or below a 5th grade reading level.[xlv] Yet, general healthcare materials that patents need to read — e.g., informed consent forms, prescription labels — are written at a 10th grade or higher reading level,[xlvi] and the writing of most patient-education materials significantly exceed a 6th grade reading level.[xlvii],[xlviii],[xlix],[l],[li],[lii],[liii],[liv]
Reading levels don’t equate to comprehension levels. One study assessed the phrase "Take two tablets by mouth twice daily". Of those with a reading level at or below 6th grade, 71 percent were able to read and explain the phrase, but only 35 percent could demonstrate how many pills were to be taken per day.[lv] A person’s comprehension level is often one to two grade levels lower than that person’s reading level. Comprehension levels drop even lower in times of anxiety or stress — experiences that are not uncommon during medical visits.[lvi]
What We Can Do
Test the accessibility of our patient education. Although they are not without limitations, programs such as Microsoft Outlook and Microsoft Word allow users to run the Flesch Reading Ease test and Flesch-Kincaid Grade Level test on documents to test readability; the latter pinpoints the U.S. grade level of readability for the text. Other readability tests and readability formulas can be found online, often with free “calculators” for ease of testing. A good place to start is ReadabilityFormulas.com. (For full disclosure, the reading level of this article is “college – graduate college”.)
Scientific writers and patient-education writers can have different skill sets. Do not assume that your scientific writer or faculty can simply put on a different hat and write content for patients. The writer of any educational content intended for patients needs to be experienced at writing at a 4th to 6th grade reading level, have knowledge of the issues that the patients are facing, know how much information is enough, understand when to include pictographs and be familiar with personalized decision aids. Don’t look to reinvent the wheel. If your organization does not have the resources or specific skill sets necessary to develop effective, accessible patient-target materials, look for partners who do.
As a community, we need to look at the educational needs and barriers of patients — including health literacy, reading and comprehension challenges — with the same vigor and resolve as we do for the needs and practice gaps with our HCP learners. It’s time to hold ourselves accountable for the patient-targeted materials that we produce and reflect on whether these materials are accessible and meaningful to all patients … or are just more noise in a sea of ineffective health information. Activating and advancing our own competencies to provide content and resources aligned with patient health literacy and understanding will affect health outcomes.
[i] US Department of Health and Human Services. National Action Plan to Improve Health Literacy. https://health.gov/communication/hlactionplan/pdf/Health_Literacy_Action_Plan.pdf. Accessed September 10, 2018.
[ii] Rudd RE, Anderson JE, Oppenheimer S, Nath C. Health Literacy: An Update of Medical and Public Health Literature. http://www.ncsall.net/fileadmin/resources/ann_rev/rall_v7_ch6.pdf. Accessed September 10, 2018.
[iii] Kutner M, Greenberg E, Jin Y, Paulsen C. Washington, DC: National Center for Education Statistics, US Department of Education; 2006. The health literacy of America's adults: results from the 2003 national assessment of adult literacy [monograph on the Internet] NCES 2006-483. [cited 2008 Mar 10]. http://nces.ed.gov/pubs2006/2006483.pdf. Accessed September 14, 2018.
[iv] Kutner M, Greenberg E, Jin Y, Paulsen C. Washington, DC: National Center for Education Statistics, US Department of Education; 2006. The health literacy of America's adults: results from the 2003 national assessment of adult literacy [monograph on the Internet] NCES 2006-483. [cited 2008 Mar 10]. http://nces.ed.gov/pubs2006/2006483.pdf. Accessed September 14, 2018.
[v] Berkman ND, Sheridan SL, Donahue KE, et al. Health Literacy Interventions and Outcomes: An Updated Systematic Review. Evidence Report/Technology Assessment No. 199. (Prepared by RTI International–University of North Carolina Evidence-based Practice Center under contract No. 290-2007-10056-I. AHRQ Publication Number 11-E006. Rockville, MD. Agency for Healthcare Research and Quality. March 2011. https://www.ahrq.gov/downloads/pub/evidence/pdf/literacy/literacyup.pdf. Accessed September 14, 2018.
[vi] Bostock S, Steptoe A. Association between low functional health literacy and mortality in older adults: longitudinal cohort study. BMJ. 2012;344:e1602.
[vii] Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, et al. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. Am J Pub Health. 2002;92:1278-1283.
[viii] Williams MV, Baker DW, Parker RM, Nurss JR. Relationship of functional health literacy to patients’ knowledge of their chronic disease. A study of patients with hypertension and diabetes. Arch Intern Med. 1998;158:166-172.
[ix] Baker DW, Gazmararian JA, Williams MV, et al. Health literacy and use of outpatient physician services by Medicare managed care enrollees. J Gen Intern Med. 2004;19:215-220.
[x] Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest. 1998;114:1008-1015.
[xi] Rademakers J, Heijmans M. Beyond Reading and Understanding: Health Literacy as the Capacity to Act. Int J Environ Res Public Health. 2018;15(8).
[xii] US Department of Health and Human Services. Health Literacy: Hidden Barriers and Practical Strategies. https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/tool3a/index.html. Accessed September 14, 2018.
[xiii] US Department of Health and Human Services. Health Literacy: Hidden Barriers and Practical Strategies. https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/tool3a/index.html. Accessed September 14, 2018.
[xiv] Schillinger D, Piette J, Grumbach K, et al. Closing the loop: physician communication with diabetic patients who have low health literacy. Arch Intern Med. 2003;163:83-90.
[xv] Chew LD, Bradley KA, Boyko EJ. Brief questions to identify patients with inadequate health literacy. Fam Med. 2004;36:588-594.
[xvi] Parker RM, Baker DW, Williams MV, Nurss JR. The test of functional health literacy in adults: a new instrument for measuring patients' literacy skills. J Gen Intern Med. 1995;10:537-541.
[xvii] Lee SY, Stucky BD, Lee JY, Rozier RG, Bender DE. Short Assessment of Health Literacy-Spanish and English: a comparable test of health literacy for Spanish and English speakers. Health Serv Res. 2010;45:1105-1120.
[xviii] Lee J, Stucky B, Rozier G, Lee SY, Zeldin LP. Oral Health Literacy Assessment: development of an oral health literacy instrument for Spanish speakers. J Public Health Dent. 2013;73:1-8.
[xix] Wallston KA, Cawthon C, McNaughton CD, Rothman RL, Osborn CY, Kripalani S. Psychometric properties of the brief health literacy screen in clinical practice. J Gen Intern Med. 2014;29:119-126.
[xx] Coleman CA, Fromer A. A health literacy training intervention for physicians and other health professionals. Fam Med. 2015;47:388-392.
[xxi] Williams R, Moeller L, Willis S. Barriers and enablers to improved access to health information for patients with low health literacy in the radiotherapy department. Radiography (Lond). 2018;24 Suppl 1:S11-S15.
[xxii] Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV. Shame and health literacy: the unspoken connection. Patient Educ Couns. 1996;27:33-39.
[xxiii] Murphy PW, Davis TC, Long SW, Jackson RH, Decker BC. Rapid estimate of adult literacy in medicine (REALM): A quick reading test for patients. J Read. 1993;37:124-30.
[xxiv] Morris NS, MacLean CD, Chew LD, Littenberg B. The Single Item Literacy Screener: evaluation of a brief instrument to identify limited reading ability. BMC Fam Pract. 2006;7:21.
[xxv] Weiss BD, Mays MZ, Martz W, et al. Quick assessment of literacy in primary care: The newest vital sign. Ann Fam Med. 2005;3:514-22.
[xxvi] Agency for Healthcare Research and Quality. The SHARE Approach—Using the Teach-Back Technique: A Reference Guide for Health Care Providers. https://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/tools/tool-6/index.html. Accessed September 18, 2018.
[xxvii] Institute for Healthcare Improvement. Ask Me 3: Good Questions for Your Good Health. http://www.ihi.org/resources/Pages/Tools/Ask-Me-3-Good-Questions-for-Your-Good-Health.aspx. Accessed September 18, 2018.
[xxviii] US Centers for Disease Control and Prevention. Plain Language and Effective Health Messages. https://www.cdc.gov/healthliteracy/training/page1623.html. Accessed September 18, 2018.
[xxix] Agency for Healthcare Research and Quality. Health Literacy: Hidden Barriers and Practical Strategies. https://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/tool3a/index.html. Accessed September 18, 2018.
[xxx] National Institutes of Health. Plain Language at NIH. https://www.nih.gov/institutes-nih/nih-office-director/office-communications-public-liaison/clear-communication/plain-language. Accessed September 18, 2018.
[xxxi] Laws MB, Lee Y, Taubin T, Rogers WH, Wilson IB. Factors associated with patient recall of key information in ambulatory specialty care visits: Results of an innovative methodology. PLoS One. 2018;13:e0191940.
[xxxii] Stossel LM, Segar N, Gliatto P, Fallar R, Karani R. Readability of patient education materials available at the point of care. J Gen Intern Med. 2012;27:1165-1170.
[xxxiii] Roberts H, Zhang D, Dyer GS. The Readability of AAOS Patient Education Materials: Evaluating the Progress Since 2008. J Bone Joint Surg Am. 2016;98:e70.
[xxxiv] Hansberry DR, John A, John E, Agarwal N, Gonzales SF, Baker SR. A critical review of the readability of online patient education resources from RadiologyInfo.Org. AJR Am J Roentgenol. 2014;202:566-575.
[xxxv] Huang G, Fang CH, Agarwal N, Bhagat N, Eloy JA, Langer PD. Assessment of online patient education materials from major ophthalmologic associations. JAMA Ophthalmol. 2015;133:449-454.
[xxxvi] Kasabwala K, Misra P, Hansberry DR, et al. Readability assessment of the American Rhinologic Society patient education materials. Int Forum Allergy Rhinol. 2013;3:325-333.
[xxxvii] Kasabwala K, Agarwal N, Hansberry DR, Baredes S, Eloy JA. Readability assessment of patient education materials from the American Academy of Otolaryngology--Head and Neck Surgery Foundation. Otolaryngol Head Neck Surg. 2012;147:466-471.
[xxxviii] Hansberry DR, Agarwal N, Gonzales SF, Baker SR. Are we effectively informing patients? A quantitative analysis of on-line patient education resources from the American Society of Neuroradiology. AJNR Am J Neuroradiol. 2014;35:1270-1275.
[xxxix] Weiss BD, Coyne C. Communicating with patients who cannot read. N Engl J Med. 1997;337:272-274.
[xl] Wallace LS, Lennon ES. American Academy of Family Physicians patient education materials: can patients read them? Fam Med. 2004;36:571-574.
[xli] US Census Bureau. Educational Attainment in the United States: 2014. https://www.census.gov/data/tables/2014/demo/educational-attainment/cps-detailed-tables.html. Accessed September 18, 2018.
[xlii] Davis TC, Wolf MS. Health literacy: implications for family medicine. Fam Med. 2004;36:595-598.
[xliii] National Institutes of Health. How to Write Easy-to-Read Health Materials. https://medlineplus.gov/etr.html. Accessed September 20, 2018.
[xliv] Weiss BD. Health literacy: A manual for clinicians. Chicago, IL: American Medical Association Foundation and American Medical Association; 2003.
[xlv] Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals. The Joint Commission. Oakbrook Terrace, IL; 2010.
[xlvi] Hadden KB, Prince LY, Moore TD, James LP, Holland JR, Trudeau CR. Improving readability of informed consents for research at an academic medical institution. J Clin Transl Sci. 2017;1:361-365.
[xlvii] Stossel LM, Segar N, Gliatto P, Fallar R, Karani R. Readability of patient education materials available at the point of care. J Gen Intern Med. 2012;27:1165-1170.
[xlviii] Roberts H, Zhang D, Dyer GS. The Readability of AAOS Patient Education Materials: Evaluating the Progress Since 2008. J Bone Joint Surg Am. 2016;98:e70.
[xlix] Hansberry DR, John A, John E, Agarwal N, Gonzales SF, Baker SR. A critical review of the readability of online patient education resources from RadiologyInfo.Org. AJR Am J Roentgenol. 2014;202:566-575.
[l] Huang G, Fang CH, Agarwal N, Bhagat N, Eloy JA, Langer PD. Assessment of online patient education materials from major ophthalmologic associations. JAMA Ophthalmol. 2015;133:449-454.
[li] Kasabwala K, Misra P, Hansberry DR, et al. Readability assessment of the American Rhinologic Society patient education materials. Int Forum Allergy Rhinol. 2013;3:325-333.
[lii] Kasabwala K, Agarwal N, Hansberry DR, Baredes S, Eloy JA. Readability assessment of patient education materials from the American Academy of Otolaryngology--Head and Neck Surgery Foundation. Otolaryngol Head Neck Surg. 2012;147:466-471.
[liii] Hansberry DR, Agarwal N, Gonzales SF, Baker SR. Are we effectively informing patients? A quantitative analysis of on-line patient education resources from the American Society of Neuroradiology. AJNR Am J Neuroradiol. 2014;35:1270-1275.
[liv] Weiss BD, Coyne C. Communicating with patients who cannot read. N Engl J Med. 1997;337:272-274.
[lv] Davis TC1, Wolf MS, Bass PF 3rd, et al. Literacy and misunderstanding prescription drug labels. Ann Intern Med. 2006 Dec 19;145(12):887-894.
[lvi] US Centers for Disease Control and Prevention. Simply Put: A guide for creating easy-to-understand materials. https://www.cdc.gov/healthliteracy/pdf/Simply_Put.pdf. Accessed September 20, 2018.