By Leni Preston
The writer is an independent health policy expert. She lives in Bethesda.
COVID-19 has taught us many lessons. Addressing them will take both expertise and time. However, I am excited that one key issue can be addressed right now in the Maryland General Assembly. That is the need for consumers to have timely and accurate information as part of a well-coordinated communication strategy.
How? By passing House Bill 1082, sponsored by Del. Joseline Peña-Melnyk (D-Anne Arundel and Prince George’s). This legislation would establish a Consumer Health Information Hub at the University of Maryland Horowitz Center for Health Literacy.
When you read or hear the term “health literacy” do your eyes glaze over? In my experience, most people’s do. So, you may ask yourself, why is this legislation important.
I doubt your answer would be that health literacy is actually critical to Maryland’s success with its current effort to transform our health care system. Or that there is a vital intersection between health literacy and health equity, the urgent need for which was exposed during the pandemic. Yet those are valid policy arguments, and for more than a decade I have advocated for these as essential for a patient-centered health system.
Today, though, I have a far more personal reason for supporting House Bill 1082 with its promise of raising health literacy levels for consumers across the state. That’s because for the past 10 months I have been immersed in the health care system as a cancer patient. Viewing health literacy through this new lens has made it clear to me that we simply must provide every single Marylander with the information and resources they need to make the best decisions for the health and well-being of themselves and their family.
Here are a few things I have learned from my personal experience.
First, it is abundantly clear that my ability to “work” the system successfully was based on more than my excellent insurance coverage or the fact that my state ranks fifth in the nation for health care. Rather it was my social and educational advantages, as well as my past health policy work, that brought me to a slightly elevated health literacy level.
Yet even those assets did not shield me from the barriers and challenges that are built into our system. Just a few of these were: identifying, coordinating and communicating with multiple medical specialists; determining which doctor had privileges at what hospital and what difference could that make; addressing technological challenges in accessing and updating my health records; interpreting and evaluating lab reports and diagnoses; and evaluating medications and treatments while faced with often conflicting recommendations from different specialists.
At every step along the way I found myself asking, what if I lived in:
- A poor urban neighborhood. Who would help me navigate the system?
- A rural area. Would I have internet access to sign into my patient portal or electronic health record (and even if I did, would I know how to use that)?
- An immigrant community. Could I find a doctor who understood my culture and language?
And, what if I had the same experience as Del. Peña-Melnyk? As an 8-year-old, and a new emigrant, she had to translate the doctor’s “confusing jargon” for her mother. What a difference it would have made if the information they received was in Spanish and plain language?
That is what health literacy is all about.
The delegate’s legislation will create the opportunity to set standards and establish best practices for medical professionals, our hospitals, and the many health organizations that work in communities across the state to provide each of us with all of the tools we need to make wise decisions. It does this in a cost-effective manner that leverages the Horowitz Center’s exceptional resources.
Our state has been a national leader in implementation of the Affordable Care Act and in the transformation of our health care delivery system. The establishment of the Consumer Health Information Hub would be one more example of Maryland’s exemplary leadership.
It is past the time to ensure that individuals no longer bear the weight of learning a language I will call “medicalese.” And, it is certainly way past the time to end a situation in which only the most privileged have the resources to find their way through the confusing maze of our current health care system.
Let’s get this done. The General Assembly should pass HB1082 and send it to Gov. Larry Hogan for his signature.