Health Literacy, Cultural Competency, and Creating Resources That Work

Links to Healthy People 2010—and Beyond

Marin P. Allen, Ph.D

Communication Director, NIDCD, NIH, DHHS

Preview

• Challenges• Health Literacy• Cultural Competence• National Initiatives• Resources for you, your professional

colleagues, and for families you serve

Challenges . . .

• The 2000 census counted 20 million people who speak poor English, 10 million who speak none.

• The White House Office of Management and

Budget in a 2002 report estimated the number of patient encounters across language barriers each year at 66 million. . .

Cultural challenges

• Cultural norms can constrain open questioning of professionals in medical and related health arenas

• Information overload is a reality. Stress is a reality. Some individuals are predisposed to become extremely passive when dealing with difficult or complicated news, some become extremely assertive, focused and insistent.

Language Challenges

According to current Federal data, there are at least 329 languages* spoken or signed in the United States. In some cities, less than 60 percent of the population has English as a first language.

* [note apparently missing data from the 550+ recognized American Indian tribes-including 223 Alaskan native]

• We have seen census statistics about the growth of the Hispanic/Latino/Latina population by 2030-- but in that same time frame the Asian American community will grow by 132 percent.

The multilingual environment in New York State is reflected in a 1995-96 statewide analysis of students receiving language services. The top five languages of these students:

--Spanish

--Chinese

--Russian

--Haitian Creole

--Korean

More Challenges . . .. . .

[Patients recall and comprehend as little as 50% of what they are told by their physicians]

• How much of what we know that we have learned by listening? 85% (Shorp)

• Amount of the time we are distracted, preoccupied or forgetful? 75% (Hunsaker)

• How much we usually recall immediately after we listen to someone talk? 50%

• We listen at 125-250 words per minute, but think at 1000-3000 words per minute. (HighGain, Inc.) – From International Listening Association

Children represent even higher percentages of diversity

• Twenty-nine of the U.S. population and one of three children is a member of an ethnic or racial minority group.

• By 2025, almost 40 percent of Americans and about half of all U. S. children will be minorities.

AHRQ reported data, Flores et al.

Health Literacy

“The degree to which individuals have the capacity to obtain, process and understand basic health information and services for appropriate health decisions.”

Healthy People 2010

Similar to our traditional understanding of literacy, health literacy incorporates a range of abilities: to read, comprehend, and analyze information; decode instructions, symbols, charts, and diagrams; weigh risks and benefits; and, ultimately, make decisions and take action. However, the concept of health literacy extends to the materials, environments, and challenges specifically associated with disease prevention and health promotion.

New Health Literacy Bibliography and representative categories of related knowledge

• Health literacy research

• Cultural competency

• Professional-patient interaction

• Language and other barriers

• Risk

• Informed consentNational Library of Medicine and NIDCD sites.

Healthy People 2010 and NIDCD

• Chapter 28: Vision and Hearing– Increase the proportion of newborns who are screened for hearing loss by 1 month, have audiologic

evaluation by 3 months, and are enrolled in appropriate intervention services by 6 months– Reduce otitis media in children and adolescents– Increase access by persons to rehabilitative services and adaptive devices– Increase proportion of people who have hearing exams on schedule– Increase the use of appropriate ear protection– Reduce noise-induced hearing loss in children and adolescent aged 17 and under– Reduce adult hearing loss in the noise-exposed public

Healthy People 2010 and NIDCD

• Chapter 11: Health Communication– Internet access in the home [Baseline 2000: 26% Target 2010: 80%]

– Improvement of health literacy

– Research and evaluation of health communication programs

– Disclosure of information to assess the quality of health web sites

– Centers for excellence in health communication

– Healthcare providers’ communication skills

NIDCD and Health Literacy

• NIDCD supports and conducts research and research training on the normal and disordered processes of hearing, balance, smell, taste, voice, speech and language. The mission includes research related to acquisition of language by individuals who are deaf or hard-of-hearing and language and literacy.

NIDCD and Health Literacy

• NIDCD also provides health information, based upon scientific discovery, to the public, medical and allied professionals, patients, industry, scientist and teachers, librarians and other information resource professionals. Some information is provided directly through a variety of media and other communication is through gateway providers.

NIDCD and Health Literacy

• NIDCD serves a wide variety of audiences who are culturally diverse and as well as those who have challenges of communication including language and literacy.

NIDCD and Health Literacy

• Communication differences or disorders that include deafness, hearing loss, auditory processing disorder, aphasia, dyslexia and others are increased challenges to obtaining information faced by 1 out of 6 Americans and may go unrecognized as contributing to the inability to get and use health information.

Areas commonly associated with health literacy

• Patient-physician communication • Drug labeling • Medical instructions and medical compliance • Health information publications and other resources • Informed consent • Responding to medical and insurance forms • Giving patient history • Public health training • Assessments for allied professional programs, such as social

work and speech-language pathology

• According to Healthy People 2010, an individual is considered to be "health literate" when he or she possesses the skills to understand information and services and use them to make appropriate decisions about health.

• Alarmingly, these skills and strategies are absent in more than half of the U.S. population.

• This fact is more disturbing when one considers that these are the very skills and strategies that often lead to longer life, improved quality of life, reduction of both chronic disease and health disparities, as well as cost savings.

Federal Calls for Action

• Secretary of Health and Human Services, urges those who are responsible • [sic--us!] “to close the gap between what the health care professionals

know and what the rest of America understands.” Message of the Day, 2003

• Surgeon General Carmona proposes three steps at the national level (sic--that can be accomplished at the local level as well): (1) building a robust health information system that provides equitable access; (2) developing audience-appropriate information and support services for specific health problems for all segments of the population, especially for underserved persons; and (3) training health professionals in the science of communication and the use of communication technologies.

• --from speech to American Medical Association House of Delegates 6/14/2003

Institute of Medicine, National Academy of Sciences . . .

“Health Literacy is where the expectations, preferences and skills of individuals seeking health information meet the expectations, preferences and skill of individuals providing information. Health literacy arises from a convergence of education, health services, and social and cultural factors, and brings together research and practice from diverse fields.”

Teams and literatures

--Medicine and Allied Health Professions--Literacy--Health Communication--Health Education--Public Health --Behavioral Research (sociology, psychology, usability, culture,

language)--Systems Research--Training

Health Communication Diffusion Theory Individual effects [individuals improve knowledge and attitudes]

Social diffusion [change in public norms]

Institutional diffusion [change in elite opinion, influencing policy, influencing individuals]

Robert C. Hornik in Public Health Communication: Evidence for Behavior Change . ed. Hornik RC. Mahwah, New Jersey: Lawrence Erlbaum Associates, 2002. p 14

Cultural Competence

Not an appliqué . . . Part of the fabric . . .

A closer look at the principles

Cultural competence requires that organizations: --have a defined set of values and principles, and demonstrate behaviors, attitudes, policies and structures that enable them to work effectively cross-culturally.

--have the capacity to (1) value diversity, (2) conduct self-assessment, (3) manage the dynamics of difference, (4) acquire and institutionalize cultural knowledge and (5) adapt to diversity and the cultural contexts of the communities they serve.

--incorporate the above in all aspects of policy making, administration, practice, service delivery and involve systematically consumers, key stakeholders and communities.

--Cultural competence is a developmental process that evolves over an extended period. Both individuals and organizations are at various levels of awareness, knowledge and skills along the cultural competence continuum. (adapted from Cross et al., 1989)

Some tips

• Nodding does not mean understanding

• Head shaking (from side-to-side) does not mean a negative response

• This is even more pronounced when communicating across languages and cultures

From Lessons Learned . . .interpreting diabetes concepts

in the Navajo Language (McCabe et al.)

• Ceremonial language about symptoms and healing • Communication of information in front of relatives

can be “extremely uncomfortable”• “inappropriate asking about personal symptoms,

people may be unwilling to return in the future”• Literal translations, while accurate linguistically

could be cultural barrier to communication

From Diabetes Care, Volume 26, Number 6 June 2003

And from NIDCD . . .more resources

A “family” of Web Sites resources for you

• www.raisingdeafkids.org/

• www.babyhearing.org/

• http://www.infanthearing.org/documents/HereditaryDeafness.pdf

• www.nidcd.nih.gov/

www.raisingdeafkids.org

Plain Language and CHOP

• Site is user-friendly for individuals with language and literacy challenges

• Interactive parent site

• Spanish language site

Dr. Annie Steinberg and Lisa Bain, Children’s Hospital of Philadelphia

New from Boys Town

• Grand Rounds lecture CD newborn screening and follow up

• Based on needs identification research• Includes audio, movie files, slides and notes• Can be used in its entirety or by using elements

Dr. Mary Pat Moeller

moeller@boystown.org

• Information on Hereditary Deafness

• Genetic Tests Available

• Deafness Gene Mutation Database

• Center Affiliates

• Opportunities to Help

• Soon to be in Spanish

New Web Usability Resource

• If you are developing Web site materials for your practice, please, consider the Research-Based Web Design and Usability Guidelines that have just been released by the National Cancer Institute. www.nci.nih.gov

A few more caveats . . .

• Pictographs are as easy to misinterpret as words may be

• Family/friend interpreters may also have insufficient knowledge of the biological processes and may truncate your information—for example . . .

Paper copies

• Hard copy can give your families a chance to figure out their questions. Hard copy is helpful for people with literacy challenges because it gives them an opportunity to work through their questions and share the information with others who may help clarify it.

. . .and the Web

• Materials on the Web are presented in layers and hierarchies that can be helpful, especially if a site allows for pull-down definitions or diagrams. These help the user stay on a page, but get needed clarification, instantly.

NIDCD Early ID Dissemination Working Group

• American Academy of Audiology (AAA)• Alexander Graham Bell Association (A.G. Bell) • American Academy of Otolaryngology-Head and Neck Surgery (AAO-HNS)• American Speech-Language-Hearing Association (ASHA)• Boys Town National Research Hospital• Children’s Hospital of Philadelphia• Deafness Research Foundation (DRF)-The National Campaign for Hearing

Health• Department of Education• Gallaudet University, Laurent Clerc Center• Health Resources and Services Administration (HRSA)• National Association for the Deaf (NAD)• National Institute on Deafness and Other Communication Disorders (NIDCD)

More to come . . .

• NLM Bibliographies in Medicine, Health Literacy -- release anticipated March, 2004

• Institute of Medicine Report on Health Literacy

expected Spring 2004

Research and communication Initiatives to be announced from a variety of agencies 2004

►Keep an eye on www.nidcd.nih.gov “health information” “health literacy” for new materials and announcements!