Chapter Sharing Roundtables - May 4, 2003
Health Literacy

Health Literacy - Table 10

Facilitator: Neil Rambo
Recorder: Beth Hill

Additional Participants:

• Marie Ascher
• Kristine Alpi
• Marcy Brown
• Suzette Kopec
• Erica Burnham
  

Topics Discussed and Ideas Shared:

Definitions of Health Literacy

• Neil Rambo handed out definitions being drafted by the MLA Task Force on Health Information Literacy, of which he is a member. The draft definition, which incorporates the definitions of both information literacy and health literacy, states that "Health Information Literacy is the set of knowledge and skills needed to recognize a health information need; identify likely information sources in all formats, and use them to retrieve relevant information analyze, understand and synthesize the quality and content of information and its appropriateness to a specific situation; and, to apply the information in making health decisions- with an aim toward improved health outcomes" [Medical library Association, in draft 2003].
• One member of the group suggested that, in the second sentence segment, the word "all" (formats) should be changed to relevant formats, because some users may be visually impaired, etc., and being health literate should not imply having to be able to use all formats.

Challenges in the Assessment of Health Literacy

• Tests that assess reading levels do not test for comprehension.
• Institutional Review Boards (IRBs) of some facilities have not approved some studies due to theft reluctance to put people who are ill through the testing.
• A lack of participation by people in literacy studies has been noted, because people do not want to expose their ignorance.
• Basic literacy is a major issue in some areas of the country, let alone the issue of health literacy.
• Before people can understand and use health information, they need to have some understanding of the basic workings of the human body.
• Cultural competence is another layer in health literacy. This concept would apply to both the population and the health care provider or educator trying to teach health literacy.
• Nurses only have a limited amount of time to work with each patient on education.

Ideas and Questions

• The American Bankers Association has done a good job in promoting "financial literacy." It might be an idea to look at their model: http://www.aba.com/consumer+connection/teaching_common_cents.htm
• The concept of "digital literacy" - being able to access information in a digital environment is an important skill also, and is linked to health information literacy.
• Some arenas for impact include the evaluation of patient education materials and in the design of websites. Websites tend to be at higher reading levels. Readability (reading levels) is not really considered when consumer health information sites are designed.
• What does this concept have to do with libraries? We are not literacy experts. But, if as medical librarians, we are involved in, or understand, patient education, we can make a contribution. The role can be an option or a specialization.
• Will these health literacy programs that are starting be sustainable after the grants are gone? This is a challenging question, and is a concern. It would be preferable to have some system in place so that they could be continued, either by the library staff, or another department or agency.
• Is interest widespread enough within the MLA membership to advocate for this issue? The consensus of the group was that there probably is, but MLA would need to branch out and work with other non-library entities and organizations already involved in literacy to make it work. That way we wouldn't be reinventing any wheels, and we could build on each others' knowledge and talents.
• Hospital librarians could work with public librarians to help them understand what health literacy is, and its importance.

Health Literacy - Table 13

Facilitator: Jan LaBeause
Recorder: Brenda R. Pfannenstiel

Additional Participants:

• Nancy McKeehan
• Holly Harden
• Elizabeth LaRue
• Beth Wescott
• Heidi Sandstrom
  

The participants introduced themselves and described their interests in health literacy, shared experiences they had had personally and professionally with health information literacy issues, shared recommendations and resources, and discussed projects they would like to undertake to improve health information literacy.

NM: has a grant to develop a website for consumer heaith information on diseases most common in her state.

HH: works on Baltimore AIDS Information Outreach Program.

EL: wants to work with nursing and allied heaith students at Columbia University to teach them how to evaluate literacy of patients and how to help them.

BW: works in NNLM Region 2, would like to develop a class to help people write and rewrite patient education/consumer health information.

JL: personal interest in helping elderly parents find appropriate materials for their education level, and professional interest as director of GAIN program working with librarian and nonlibrarian maembers in providing health information.

HS: NNLM-Pacific SW consumer health librarian (and RN) is interested in health literacy for consumers.

BP: would like to develop a three-tiered website (basic level, more details, technical level) conceming inheritance, environmental toxins, drug/alcohol exposure, etc. answering question "why does my child have cancer/autism/birth defects, etc." This would have to address health information literacy issues such as understanding the concept of "relative risk" or "autosomal dominance."

Discussion points made:

Medicare requires that information be written for patients at a 5th grade reading level. Easy reading material identified on MEDLINEpIus and NIH sites varies in reading level; if all the material is written at a 12th grade reading level except for one file written at a 9th grade reading level, that file becomes the "Easy Reading" file.

Computer filters may remove graphics on some subjects (e.g., effects of Viagra) or remove common language for body parts or diseases. Noted the importance of using graphics or common names for communication about diseases or body parts or risk behaviors (e.g., gonorrheal"the clap").

Also important to use dolls and other visual/tactile models to communicate health information. It would be helpful to assess the patienrs preferred leaming method to effectively communicate health information.

Physicians need to leam how to talk to patients; don't just announce the diagnosis and walk out They should be prepared to repeat the information several times, as patients don't hear/absorb it all the first time, especially if the information comes with an emotional burden. Patients will parrot back to the physicians what the physicians say without admitting that they don't understand the information. Some cultures are deferential toward doctors and are unlikely to question or ask for clarification.

Noted that one can't tell by looking if the patient is literate, and some patients read well but have poor number literacy (innumeracy?). Recalled the ER (TV series) episode in which a patient given a drug with written instructions to take once a day, interpreted these instructions as eleven times a day because "once" is Spanish for eleven.

Story recalled of a woman who put pills in her pill diary-put all her heart medications in the Monday slots, all her bladder medications on another day. It was assumed that the woman understood how to use her pill diary to keep her complicated drug regimen straight, but she was hospitalized due to this mistaken assumption. Never assume that someone understands.

Story recalled of mentally retarded man who confused schedule for his two drugs (one 3X a day with meals, one IX a day) and was hospitalized with toxic dose. Doctors attached a pictogram label to his drug refills, but were frustrated that there was no way to ensure that similar labelling would be used on his next refills, because the system didn't allow for it.

Noted the need to raise awareness about these heaith information literacy issues. Need for a clearinghouse for low literacylheaith information literacy resources, where materials can be pooled and shared.

Discussed resources such as PlainLanguage.gov and Peggy D'Amato's listserve conceming minority, high-risk, immigrant populations.

Suggested that there may be opportunities to collaborate with public librarians.