Coauthored by Terri Coutee and Minas Chrysopoulo, MD
2020 has been a disruptive year in health care. We are learning a great deal from the avalanche of stresses put upon our health care during the global pandemic. One thing remains a constant and important cog in the wheel, the impact and importance of health literacy. I had an opportunity to engage in conversation recently with Gareth Presch and Dr. Minas Chrysopoulo, founder of – Toliman Health.
Let’s look at the key elements.
Access to information
Understanding Information
Using the Information
These three basic components are what patients actively engage in to make the appropriate decisions for their health. Although looking at it on paper this seems simple enough, the act of engaging in health literacy becomes far more complex for a patient diagnosed with a any condition. It is the process patients must understand and actively take part in. Often times it is not by choice but because they are faced with a diagnosis, one they may know nothing about until the time of diagnosis.
Access to and Understanding Information
Dr. Chrysopoulo points out that healthcare professionals, the media, and organizations often present information in ways that make it difficult to understand and act upon.
Limited health literacy is
- Negatively associated with the use of preventive services (e.g., mammograms or flu shots), management of chronic conditions (e.g., diabetes, high BP, asthma, and HIV/AIDS), and self-reported health.
- Correlated with preventable hospital visits
- Associated with misunderstanding instructions about prescription medication, medication errors, poor comprehension of nutrition labels, and increased mortality.
He explains further that certain populations are most likely to experience limited health literacy:
- Adults over 65
- Racial and ethnic groups other than White
- people with any type of disability
- Recent refugees and immigrants
- People with less than a high school degree or GED
- People with incomes at or below the poverty level
- Non-native speakers of English
All these groups are also more likely to lack adequate health insurance than adults with proficient health literacy.
So How Do We Improve Things?
We live in a world of various digital platforms, Google, Facebook, and Twitter to name a few. But as Gareth points out in the opening of the program digital platforms become useful when there is “meaningful interaction”. When you take on the role of providing information in platforms pertaining to health, providing evidence-based information in combination with the lived, patient experience can be a powerful way to provide access to health literacy.
As gatekeepers of providing health information, communities of trust and authenticity must be established. Acknowledging each person’s purpose in a conversation is key to developing understanding in health literacy. In the Facebook group I curate, clinicians, and health care providers as well as patients are part of this community of shared information.
Dr. Chrysopoulo feels that the costs associated with improving patient health literacy are very worthwhile when weighed against the financial and human costs associated with ignoring the problem. There are several potential strategies that could help improve health literacy:
- Technology—Being mindful of the digital divide, we must consider technology as an essential tool for improving health literacy.
- Encourage and help healthcare and advocacy organizations to assess and meet the communication needs of their patients.
- Participation—Health literacy has its roots in community engagement. We must partner with the people whom we are trying to help.
- Provide everyone with access to accurate and actionable health information.
- Teach our clinicians how to provide targeted and tailored communication.
- Deliver person-centered health information and services.
- Help people navigate their health system via patient navigators.
- Support lifelong learning and skills to promote good health: incorporate accurate, developmentally appropriate curricula stating in childcare, through to the university/college level.
- Support and expand local efforts to provide adult education, english language instruction, and culturally and linguistically appropriate health information services in the community.
- Partnership—We must create partnerships with communities and each other.
- Encourage workplace initiatives.
- Encourage and help organizations assess and meet the communication needs of their patients. e.g. modifying consent processes, redesigning forms in advance to meet low literacy needs.
- Increase basic research and the development, implementation, and evaluation of practices and interventions to improve health literacy.
Using the Information
The Facebook community mentioned previously is one example and where the potential impact of health literacy can take place. Through these connections and conversations, gaps in using the information can be closed. Patients have gone on to become motivated to help others through similar health crisis and concerns. Once the trust has been established in these communities it can have a powerful ripple effect.
As Dr. Chrysopoulo points out, general literacy and health literacy are linked. When patients are increasingly being asked to make important decisions about their health the barriers that are part of health literacy can affect the quality of care. Patients who have been through this are keenly aware of what can happen.
Once they have navigated the system, the ripple affect takes part when they reach out to those who may not have the information. It may be in other online support groups, in small group discussion with family and friends, finding ways to reach a smaller population in rural settings, or crossing cultural barriers providing health literacy information in other languages. These small ripples are helping to close the gap one patient at a time.
There is tangible evidence using digital platforms is changing access to and understanding health literacy. But we must continue to create opportunities for this to continue in a responsible manner for it to be meaningful for patients across all platforms of learning. It will continue to be a massive undertaking. As we anticipate changes in health care and act on them , we can make a difference in improving health literacy by reinvesting in our communities.