Low Literacy and Health

Low Literacy and Health: A Review of the Discussions on the NIFL-Health Listserv During a Selected Period of Time

The following paragraphs describe the results of a review of a Listserv group, associated with the National Institute for Literacy (NIFL-Health). The period reviewed was from June 17, 1998 through May 5, 1999. During this period, the Listserv members primarily discussed issues concerning individuals demonstrating Level 1 literacy skills (noted as 0-8 grade reading skills) trying to give and/or obtain medical information. From the stated backgrounds, educational levels, and influential positions most of the list members hold, one could surmise that the literacy problem in the U.S. and Canada is of large enough proportion to attract immediate attention at the highest levels. Additionally, the diversity of agencies represented would indicate low literacy as a cross-cultural problem, thus increasing the need for culturally sensitive solutions.

The goals for this period seemed twofold. The first was to identify those individuals with literacy problems affecting medical care issues and the second was identifying and discussing ways of helping these individuals obtain minimally acceptable medical literacy skills. The listserv is a place for literacy professionals to exchange ideas and comments/suggestions for techniques used successfully and unsuccessfully in the field of medical literacy. The Listserv membership consisted of individuals representing many different organizations seeking to improve health care in a specific ethnic, socioeconomic, or other at-risk population. Information requested and exchanged included different types of "easy-to-read" medical educational materials, especially those written specifically for refugees.

With the need for such specialized programs, a common theme was the increased difficulty in standardizing one modality for the solution to the literary professionals' efforts. Compounding this situation is the many levels of daily life that low literacy skills affect which the Listserv also addresses. However, the one common variable that the majority of the Listserv members share is that low-literacy skills appear to be more prevalent in the lower socioeconomic population.

Between June 17, 1998 to May 5, 1999, the NIFL-Health Listserv focused on the following major concerns and issues.

The Listserv moderator (1/18/99), made a well-noted statement that, "While there is a great deal written about programs (concerning low literacy problems and health) in the US and Canada, it is not presented in a standardized format." She stated that the most problematic part of any project is funding, which was supported throughout all Listserv members. The fact that no empirical data show direct relationship between the financial benefits of health and improved literacy skills continues to hamper funding requests. In her writings she states that lessons learned from study programs, such as Canada's Best Practices programs, include recommendations to "1) create a centralized and standardized way to communicate and inventory health and literacy programs, and 2) develop outcomes-based studies of the financial benefit of health and literacy programs."

Another participant (4/22/98) states that there is "no research evidence (in developed/industrialized nations) that a person's health status can be improved by improving his or her literacy skills." Yet the Listserv participants raise questions about whether there can be studies using literacy skills as an independent variable and how could such studies conducted ethically? Critical incidents exchanged by Listserv members justify the increased need for medical literacy education by including stories which emphasis literacy hazards. One story told of a worker (who) died as a direct result of his inability to read the directions on some chemicals. The relationship between his low literacy levels and his unfortunate death was cited in the inquest as the major factor. (4/22/98) Another story involves a mother who kills her infant as a result of "pushing fluids," and the stories continue. Thus, the Listserv discussions indicated that more elaborate studies are needed to show the relationship between the effects of low literacy skills and accidents. It was also noted that even individuals with average literacy levels may not be able to read or fully understand the implications of using some industrial strength chemicals or follow the instructions given by medical professionals.

A common reoccurring theme, addressed by the Listserv moderator (1/26/99), is that people "often rely on their doctors to provide the (necessary medical) information, feeling that their personal physician should be the key education portal for their needs." She adds that when low-literacy skill levels are not recognized, the "consequences of literacy are profound and even potentially life threatening." Another participant (5/6/98), states that the amount of time spent by doctors with their patients and families is about four minutes. He further states that, "nurses have historically been more responsible (than doctors) about imparting health information to patients."

One of the Listserv members (4/7/98) described Canada's recent program designed to aggressively and effectively address that country's literacy health issues. The program, "Partners in Practice," is based on work by the Ontario Public Health Association Literacy and Health Project. The program convened a forum of educators, medical professionals, and community workers to produce readable, and relevant materials on the subjects of sexuality, and pregnancy. In addition, readable surveys about local health needs have been developed. This program is time-consuming, but the benefits are noted as "well worth the effort." The Listserv member describes the program's recognition for increased low-literacy medical knowledge skills and the increased involvement by low literacy experts, medical experts, and students who conduct the program.

Another discussant (1/16/99), addresses the fact that "health Web sites are one of the hottest items on the net. Lay people are visiting these sites in droves to seek medical information." Her conclusion is that medical-association-type-Web sites contain information written at a readability level that requires high medical-specific literacy skills to decipher the data available. The general consensus of the Listserv discussions was that there is a need for low-literacy/easy-to-read medical Web sites. Some members mentioned that they were currently working on this issue, and welcomed any help offered by the Listserv membership.

The Listserv members spent time addressing how to replace some of the current by-used medical terms with "everyday" language. A few of the identified problem areas and possible solutions are given below:

Problem explaining: "Discolored phlegm," or "yellow mucous"
Everyday Language: "Green snotty noses"

Problem explaining: "Exceeds"
Everyday Language: "More than"

Problem explaining: "Immediately"
Everyday Language: "Right away"

Problem explaining: "Administer"
Everyday Language: "Give"

One of the major concerns was explaining "Bowel Movement" or "Feces." The Listserv members felt that "shit" and "crap" were too vulgar, yet words such as poopooh, caca, poop, #1 or #2, might not get the point across either. Other low literacy words suggested for common bodily functions were "Urinate," "Move your bowels," "Vomit," or "Throw up."

A point was made of the fact that many medical information writers will write what he or she thinks the reader needs to know - not what the reader actually wants to know. A second point was that many of the easy-to-read materials are dull. Thus, a concern of these Listserv members is how to keep the reading interesting while still retaining its value.

Another topic addressed was the proper use of fractions or percentages in providing information. Suggestions given included using graphs or pie charts, and one of the contributors said she used drawings of people to illustrate statistics. One example is to use 10 figures and coloring 5 to indicate ½ or 50%.

It was suggested that a way to express risk/benefit statistics is to use the phrase "your chances of getting ________ are like your chances of ________," (5/15/98). This is assuming that you can find items to which the patient can relate. One individual suggests the use of colored Lego toys. Other Listserv members suggest to those in search of pictorial aids to try such sources as the Dartmouth COOP that uses charts similar to Snellen vision charts. These charts use pictorial illustrations to solicit patient responses.

One of the list members is undertaking a project with Haitians to survey preventable diseases, primarily diabetes. Much discussion was spent asking for ways previously used, successful or not, to improve surveying and interviewing individuals in trying to determine in which format people prefer to receive information.

Another common problem is how to ask the person being medically screened, if they can read or write. There is a concern of how to ensure that the individual would answer honestly. A point was made that when asked, "Can you read?", "Can you write?", or "Do you understand English?", too often the individual will answer "Yes" in order to avoid embarrassment or displaying ignorance. Instead of these direct questions, one discussant (1/28/99), suggests a method he has used which asks patients, "How would you prefer to get the information you need about your (condition, illness, or disease)?"

Two formal medical screening and literacy assessment tools recognized by some members of this Listserv are the Rapid Estimate of Adult Literacy in Medicine (REALM) and the Test of Functional Health Literacy in Adults (TOFHLA). For more information, members are instructed to use Medline, using the author name, Davis, T.C., for the Rapid Estimate of Adult Literacy in Medicine (REALM) information. The REALM can be used to "quickly" (less than 3 minutes) assess word recognition skills and provide an approximate grade level of a patient's reading ability. For information on the TOFHLA test, search Medline using the keywords "Test of Functional Health Literacy in Adults (TOFHLA)" or by the authors names Williams, M.V., Barker, D.W., or Parker, R.M.

Another issue discussed by Listserv members was the new FDA rules and guidelines for the manufacturing as of OTC drugs mandating that labels, dosage charts, information on ingredients, and warnings be written in as easy-to-read and understandable format. Several literacy experts are working with OTC drug companies to create these new "easy-to-read" labels and inserts. Yet they have admitted that getting changes in labeling regulations is "a slow process," and complying with these new requirements will also take time. The art of trying to articulate medical terms into low-literacy/easy-to-read terms is extremely difficult and time-consuming. It was suggested that the patient needs to be educated about the drugs they are to take, the reason the drug needs to be taken, why the drug is important, and all the possible side effects of the drug. The results from this approach (5/6/98) would be greater compliance and adherence to the physician's instructions. There is some feeling that physicians and pharmaceutical companies may be denying the public drug and treatment information because "keeping the information means keeping the power."

Some of the members of this Listserv feel that the AMA and its physician membership are not showing sufficient interest in low literacy issues. It was recalled by one of the Listserv members, that during a panel discussion in Washington, DC, as a part of the Health People 2000 project, AMA representatives made it very clear that the physicians do not want "patients to have information." Too much information "means too many questions to them (the physicians)." Still, most people do rely on their primary physician as the key source for their medical information. As we move toward increased HMO care, many people will no longer have a single physician on which they may call. One individual (1/26/99) points out that when this contact is unavailable from their primary physician, people "feel ill equipped to seek/find valid information elsewhere." She states that some of the reasons these need go unmet are: 1) people do not want to appear uneducated, inferior, or a nuisance; 2) they are too proud to ask people they do not know; or 3) to access and navigate health care information requires complex social, literacy, and critical- thinking skills.

As a final statement, one Listserv member (3/4/99) has summarized the problem well by saying:

"We know that lots of areas factor into readability beyond limiting big words and making sentences shorter. Motivation is one big factor. A person who is a great reader, but who has no frame of reference on working a VCR, may not be able to figure out how the darn contraption works. A person who has limited reading skills, but has a child diagnosed with leukemia may pour over information, learning complicated terms and weeding through lots of 3-syllable words. I am not saying this is optimal. I am saying people can get highly motivated when they themselves or someone they love is in a medical crisis."

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