October is Health Literacy Month, and in observance, Associate Professor Joy Deupree, PhD, MSN, CRNP, WHNP-BC, has shared the story of how she came to study health literacy. Deupree serves as the Chair of the Alabama Health Literacy Initiative, a formal initiative recognized by the Centers of Disease Control and Prevention to support patient-centered educational opportunities, guide outreach activities and create partnerships to advance health literacy and improve health outcomes.
In 1997, my oldest daughter wanted to become a literacy tutor. She was a few months shy of her 18th birthday, which meant she needed a parent to accompany her to the lessons and then later with the tutoring sessions. Even though I had a full schedule as a home health nurse and MSN student, I agreed to go with her, and from January to March of 1997 my daughter and I attended classes to become official Laubach Literacy Tutors.
In April, 1997, it was official — my daughter and I were certified, and we took on a student together in May. Little did I know this journey would change my life.
Our first student was “Ms. B,” and we spent two hours a week with her over the summer. Her life had been one of missed opportunities, and she could only spell her name and count to 10. She was told at an early age that she needed to work to bring money in for the family, which led her to drop out of grade school. Her brother was allowed to stay in school, and as the years passed, he took care of her. Soon, however, her situation would change.
Ms. B’s brother was diagnosed with a terminal illness and had a few months left to live. Her goal was to learn to read and write at a sixth grade level so she could live alone, balance a checkbook, understand a bus schedule and manage her health care needs. By late summer, Ms. B had met her goal.
Ms. B had no learning deficits, but she previously lacked the support and opportunity to become self-sufficient. This realization and seeing her meet her goal meant that I learned a lot from Ms. B. I have never been so humbled in my life.
My daughter continued as a tutor, but my time was limited as I was finishing my MSN and soon would be practicing as a nurse practitioner.
In September 1999, I was a new UAB School of Nursing faculty member and saw an announcement about the Pfizer Clear Communications grant. It had the term “literacy” prominently displayed, which caused me to read further. The description brought back memories of tutoring with my daughter and Ms. B. But this was for a grant for “health literacy” — how was that connected to what I had done as a tutor? I applied, and several months later, Marion Broome, PhD, RN, FAAN, and I were awarded one of six $100,000 grants. We were the only nursing school to receive the award that year.
We spent the next two years working with caregivers of children ages six months to six years to help them learn how to recognize and manage a true fever. From that experience, I found the field of study for my doctoral studies —health literacy. Almost 20 years later, I have made a career out of the study of and development of initiatives to improve health literacy for patient populations, developing a curriculum for UAB School of Nursing undergraduate students, being named a Robert Wood Johnson Foundation Executive Nurse Fellow and serving as Chair for The Alabama Health Literacy Initiative, a formal state effort to improve health literacy.
Even though Alabama has made progress in health literacy, there is enough work to last for generations to come. Up to 16 percent of adults in Alabama do not have a high school diploma and lack basic prose literacy skills, meaning they cannot read and may or may not be able to circle the date on an appointment slip, and 22 percent of all Alabamians are estimated to have basic literacy skills, meaning they may or may not be able to determine when it is appropriate to drink before a medical test based on brief instructions
The Department of Health and Human Services estimates 9 out of 10 adults have difficulty with health information because it is more difficult to understand than basic prose and numeracy documents. The complex nature of medical information requires skills such as calculating blood sugar levels, measuring medication dosing, understanding nutrition labels and choosing a health plan or comparing prescription drug coverage. Low health literacy also is associated with higher mortality, higher rates of hospitalization, and poor self-management skills for chronic disease. Patients with low health literacy are more than twice as likely to be readmitted to the ER or hospital within 30 days.
Coupled with low health literacy levels, Alabama has some of the worst reported health outcomes, ranking 47th in the U.S. for avoidable hospital use/costs and 47th for overall health outcomes.
Thankfully, with funding from my Executive Nurse Fellowship (2014-2017) with the Robert Wood Johnson Foundation, and endorsement of the Alabama Governor’s Health Care Improvement Task Force, I collaborated with stakeholders across Alabama to establish the Alabama Health Literacy Initiative. In 2017, the Centers for Disease Control and Prevention (CDC) recognized 20 states with established health literacy initiatives to support health literacy, including Alabama. With an infrastructure now in place, clinicians, patients, health care systems, schools that prepare professional health care providers as well as those who write policy now have the opportunity to link to a group of like-minded people in Alabama who share their passion for improved patient understanding. Improving low health literacy is not rocket science but it is costing us more than an estimated $238 billion in America annually.*
During Health Literacy Month, please join me in advocating for those who suffer from low health literacy. I am proud to say Ms. B learned how to read and write well enough to live alone after only five months, and we can likewise help to improve the health literacy of others.
My daughter continues her work as a tutor and it is her passion to help others enjoy what most of us take for granted — reading a book! My work continues to educate the next generation of health care professionals to understand their role in communicating with patients and continually look for partnerships and grant funding to support the work for the Alabama Health Literacy Initiative.
*Haun, J.N., Patel, N.R., French, D.D., Campbell, R.R., Bradham, D.D., Lapcevic, W.A. (2015) Association between health literacy and medical care costs in an integrated healthcare system: a regional population based study. BMC Health Services; 15:249. doi: 10.1186/s12913-015-0887-z
*Vernon, J. A., Trujillo, A., Rosenbaum, S., & DeBuono, B. (2007). Low health literacy: Implications for national health policy. Washington, DC: Department of Health Policy, School of Public Health and Health Services, The George Washington University.