There's no doubt about it: Health information can be
confusing and, sometimes, downright overwhelming – even under the best of
circumstances. And too often, when we’re trying to understand medical
terminology and make decisions about our care, we’re already in a vulnerable
state.
Incredible scientific and technological advances in recent
years have given us the ability to prevent, diagnose, and treat more health
conditions than ever before. Genetic technology allows us to sequence a
person’s genome quickly (and relatively affordably) and genetic testing is
becoming more widespread. There’s an abundance of information for healthcare
professionals to communicate and for patients to process. As a result, health
literacy is an increasingly critical concept.
What is health literacy?
"Health literacy has been defined as the degree to which
individuals can obtain, process and understand the basic health information and
services needed to make appropriate health decisions."[1] It encompasses a variety of skills,
including:
- General literacy
- Level of experience with the healthcare system
- Cultural and linguistic factors
- An understanding of numeracy (mathematical
concepts & their application, an essential part of risk communication in
genetics)
Health literacy is the single best predictor of an
individual’s health status, even more important than age, income, employment
status, educational level or racial/ethnic group.[2]
According to the National Assessment of Adult Literacy (2003) about 36% of US
adults have limited health literacy and have on average increased incidence of
chronic illness, lower utilization of preventive health services and poorer
self-reported health.[3]
Reaching individuals with limited health literacy with understandable and
culturally competent information about genomics will be critical for disease
prevention and treatment approaches targeting populations with the greatest
health needs.[4]
Even well-educated individuals
with high general literacy can feel overwhelmed having to navigate complex
medical jargon. Emotional factors can pose additional barriers to understanding
when the patient might ordinarily be able to understand the words and concepts
being presented.
Genetic counselors can help. They
are trained to assess health literacy and communicate complex information to assist
patients in making informed decisions. Just a few of the many topics they cover
include: family health history; the role of genes in birth defects; inherited
recessive conditions; and how genes and other factors contribute to heart
disease, diabetes, cancer and other disorders.
As genetic technology advances – making use of genetic tests to screen,
diagnose and treat disease – genetics
professionals in clinical and public health practice will increasingly be
called upon to translate genetic and genomic information to individuals, families
and the general public in order to improve the health all Americans.
[1] Lea,
D.H., Kaphingst, K.A., Bowen, D., Lipkus, I., Hadley, D.W., Communicating
Genetic and Genomic Information: Health Literacy and Numeracy Considerations,
Public Health Genomics, 2011, Jul;14(4-5): 279 – 289.
[2]Ibid., pg.1
[3]Lea, D.H., Kaphingst, K.A., Bowen, D., Lipkus, I.,
Hadley, D.W., Communicating Genetic and Genomic Information: Health Literacy
and Numeracy Considerations, Public Health Genomics, 2011, Jul;14(4-5): pg. 280
[4] Ibid., pg.280
