As the concept gains traction, how can we use it to think about addiction and substance use?


Health Literacy: the capacity to obtain, process, and understand basic health information and services to make appropriate health decisions.  

 –The Institute of Medicine, 2004 

On October 16, I attended the Regional Health Literacy Coalition (RHLC) conference, “Health Literacy: Public Health, Our Health,” at the University of Pittsburgh.  There, I learned that October is the CDC’s Health Literacy Month and with a little more investigation, I learned that we have just finished up the Society for Public Health Education (SOPHE)’s National Health Education Week, which runs Oct. 21-25.

All signs seem indicate that now is the time to be thinking about health literacy.

I have been thinking a lot about learning these days.  I try to learn a great deal every day—with uneven success.  Oftentimes, it’s retention that causes me problems.  I encounter so much information, written and spoken–I even post some of it on my or IRETA’s Facebook wall–but how do I understand these ideas about substance use and addiction so that I can use them when I need them?

This is exactly the kind of question the RHLC is designed to address.

“No one chooses to be sick, but staying well requires a healthy understanding,” write RHLC co-chairs, Candi Castleberry-Singleton and Yvonne Cook.

These days, health literacy is a hot topic.  The CDC points to the year 2010 as a “tipping point” for the concept, when it entered the mainstream of health policy. Most significantly, the Affordable Care Act passed in 2010; several ACA provisions directly acknowledge the need for greater attention to health literacy, and many others imply it (more here).


Click here to view full slideshow from the RHLC conference

In the same year, the Plain Writing Act of 2010 was signed into law, which requires the federal government to write all new publications, forms, and publicly distributed documents in a “clear, concise, well-organized” manner that follows the best practices of plain language writing (this includes health information).  Also in 2010, HHS released a National Action Plan to Improve Health Literacy, which “envisions a restructuring of the ways we create and disseminate all types of health information in this country.”

Why this sudden buzz around health literacy?

“Low health literacy has been estimated to cost the U.S. economy between $106 billion and $236 billion annually.” (Vernon et al, 2007)  Right.  Healthcare costs are skyrocketing.  And we’re trying to understand why.


Health literacy may help the US manage healthcare costs, now a bigger part of our overall spending than any other developed nation
Image: George Mason University

One of the major themes of the RHLC conference is that most of us have difficulties with health literacy. According to a national survey, 88 percent of adult English-speaking Americans need help understanding health care information.  And, in fact, that number becomes 100% when you reach a certain threshold of complexity and specificity.

Given the universality of the problem, responsibility for improving health literacy doesn’t lie solely with the patient.

"I'm nodding like I understand but I have no idea what you just said."

“I’m nodding like I understand but I have no idea what you’re talking about.”

Karen Komodor, RN, BSN, CCRN, Director of the Health Literacy Institute at St. Vincent Charity Medical Center in Cleveland, Ohio, led a presentation about the formation of the HLI and its goals at the RHLC conference.

“A big focus, initially, was on the low-literate patient, the individual’s ability to understand,” she said. “It has since evolved and now includes the caregiver’s ability to communicate so that the patient can understand.”

And the HLI has gotten onboard with the Agency for Healthcare Research & Quality (AHRQ) campaign, “Questions are the Answer,” which emphasizes the vital importance of asking questions of your medical practitioner.  Below is a video produced by the AHRQ for use in healthcare waiting rooms.

Quote from the video: “Communication is a two-way street.  Sometimes Starbucks does a better job at this than we do in healthcare.”  (4:33)

UPMC Chief Inclusion Officer and RHLC co-chair Candi Castleburg-Singleton agreed wholeheartedly.  “We need to arm a consumer with the courage to ask the right questions,” she said in her presentation.

Other presenters touched on a host of issues related to health literacy—both obvious and less-obvious.  For example, did you know that American Sign Language is based on the French language?  And that when you pass a deaf person a note written in English about how to take medication or manage a chronic condition, that person may have difficulty understanding it?  I didn’t know that.

Another presenter gestured to a humorous linguistic mix-up that could have not-so-humorous consequences.  Instructions to “take one pill once a day,” to a Spanish-speaker, could have disastrous results: “once” is “eleven” in Spanish.

How does this apply to substance use and addictions, I kept thinking.  Answer: in so many ways.

Health literacy is the capacity to obtain, process, and understand basic health information and services to make appropriate health decisions.  Just obtaining information about substance abuse and addiction treatment can be extremely difficult.  And no one is asking enough questions.

Anne Fletcher drives home this point again and again in her recently published book, Inside Rehab.  The shortcomings she observes about health literacy related to addiction treatment align with the messages we hear from the AHRQ: information needs to be clearly communicated; consumers need to proactively engage with it.  It’s a two-way street.


A two-way street
Photo: Wikimedia Commons

Information about addiction and addiction treatment is not clearly communicated, nor is it readily available.   A local example is the report generated by Pennsylvania nonprofit, MOMSTELL, which conducted an Access to Treatment Barriers Survey in 2009.  The results were discouraging (though unsurprising): nearly 30% of respondents seeking treatment had no idea who to call.

And consumers rarely engage proactively with information about treatment–often because they are in a time of urgent need when they are trying to obtain information.  In Inside Rehab, the issue of asking questions comes up again and again.  Fletcher quotes Tom McLellan on the topic, who says drily, “When it comes to picking a rehab, most people ask more questions before buying a vacuum.” (Inside Rehab, p 6).

Every chapter of Fletcher’s book concludes with a list of questions for a consumer to ask about the rehab facility.  And she includes, as an appendix, “A Consumer Checklist for Checking Out Rehabs.”  Examples include:

“How soon do you accept people into treatment after they have an assessment and decide they want to come to your program?”

“How much time is spent in group counseling?  How much time is spent in individual counseling?”

“Describe your use of any medications that help people overcome addictions.  Do you send people home on these medications?”

These are the types of questions that improve a consumer’s health literacy when seeking treatment for (and eventually managing his or her own) substance abuse and addiction. Fletcher wrote her book in response to a dearth of helpful guides for treatment-seekers.  (Here, I would be remiss if I didn’t also mention NIDA’s excellent brochure Seeking Drug Abuse Treatment: Know What To Ask.)

Although asking questions is important, we know that it’s complicated by prejudice and lack of knowledge about addiction and its treatment.  This discrimination exists in our general culture and pervades the healthcare industry.

One of the evidence-based practices that IRETA works often to implement, SBIRT, is designed to combat these barriers.  SBIRT stands for Screening, Brief Intervention, and Referral to Treatment.  It’s a protocol that healthcare providers can implement to identify, reduce and prevent problematic substance use.

The “SBI” portion provides health education related to serving size, frequency of use, and harms associated with various patterns of use.  The “RT” portion helps consumers better understand how to access services to address substance use and addiction.  Here’s an example of SBIRT with an older adult.

Questions are the Answer: “Would you mind if I spent a few minutes going over your alcohol screening form with you?” (0:48)


Broad implementation of SBIRT will improve health practitioners’ literacy in the area of substance use and addiction and contribute to higher health literacy among the general public.

We know that health information exists that can save money and pain.  Health literacy advocates ask, “How can we get that information to patients so that they can understand it to better manage their own health?”

And in our efforts to better address substance use and addictions to improve outcomes for individuals, families, and communities, how can we tap into the strategies and tools generated by health literacy advocates to guide our work?

Recommended Resources

Decoding Medical Gobbledygook: Health Literacy Puts Patients First

#healthlit on Twitter

Health Literacy: A Prescription to End Confusion Report Brief, Institute of Medicine (2004)

Inside Rehab: The Surprising Truth about Addiction Treatment–And How to Get Help That Works on Amazon

Inside Rehab (blog) on Psychology Today by Anne Fletcher


From the conference

Regional Health Literacy Coalition website

Overview of Health Literacy and the Regional Health Literacy Coalition (PPT presentation led by RHLC co-chair Candi Castleberry-Singleton)

Health Literacy Journey at St. Vincent Charity Medical Center (PPT presentation led by Karen Komodor, RN, BSN, CCRN)

UPMC and Highmark agree: Our community needs more and better health information (op-ed) by RHLC co-chairs in the Post-Gazette