would not be able to recognize a medical appointment on a hospital appointment form, nor would they be able to determine from a clearly written pamphlet containing basic information how often a person might have a specified medical test.
Low Health Literacy Impacts Health and Wellbeing
Individuals seeking care need access to health information that they can find, understand, and use.
New Definition of Health Literacy
Healthy People’s new definition of health literacy has two parts:
- Individual Health Literacy. The first part of the definition is aligned with older definitions of health literacy, as it focuses on an individual’s own ability. It defines individual health literacy as:
the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
- Organizational Health Literacy. The second part of the definition expands the older definition of health literacy by including organizational responsibility. It defines organizational health literacy as:
the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
The Role of Organizations
Under this new, expanded definition, organizations are responsible for ensuring their communications are accessible to and can be understood by patients and others seeking care through their health facilities. The new definition charges organizations with ensuring that all of the complex technical details in health information are easy to find, understand, and use. Thus, the expansion is a positive move towards improving overall healthcare outcomes, access, and equity for all individuals seeking healthcare services regardless of age, race, ethnicity, or socioeconomic status.
Meanwhile, under the current version of the Cures Act Information Blocking Rule (which took effect April 5, 2021), this organizational responsibility has been elevated to a comprehensive legal requirement. (The Cures Act 2.0 contains this rule as well.) This rule requires healthcare organizations (upon request) to give patients full access to their electronic health information and medical records. Failure of an organization to provide this access may result in legal penalties. Unfortunately, organizations may find it challenging to implement the Information Blocking Rule in a way that allows individuals to find, understand, and use the complex information in their medical records.
The Cures Act 2.0 and Organizational Health Literacy
The Cures Act 2.0 presents an opportunity to support organizations in implementing the Information Blocking Rule and to push organizational health literacy even further. Section 202: Increasing Health Literacy to Promote Better Outcomes for Patients seeks to create systemic improvements for enhancing health literacy by employing and implementing best practices that can be used by organizations that receive federal funding under Medicare and Medicaid. If passed, the Cures Act 2.0 would be a critical update to the current version of the Cures Act, which refers to health literacy only once. Many healthcare organizations, such as the Association of American Medical Colleges, the National Health Council, the American Health Information Management Association, and the American Dental Association, have communicated their comments and support for the Cures Act 2.0.
The Cures Act 2.0, Health Literacy, and the Law
In addition, the Cures Act 2.0 would help set a legal health literacy standard for communicating information that is accessible and easy to understand for patients and individuals seeking healthcare; this should be an objective when new laws and analysis of the law raise issues of health literacy. If passed, the Cures Act 2.0 would give voice to health literacy by using the law as a tool to support organizations in their effort to implement the new health literacy definition and ultimately prevent low health literacy from being a barrier for any patient.
Currently, there is no legal “health literacy” standard that a court relies on when deciding cases that factually involve health literacy-related circumstances. For example, health literacy issues arise in instances where a healthcare provider’s communication to patients includes poorly written medication instructions, an overuse of technical medical words and phrases for an individual with low health literacy, and/or a failure to “teach back” what a patient needs to understand for proper wound care at home. However, legal claims brought by patients generally do not stand alone on health literacy grounds. Instead, adverse incidents involving health literacy are generally coupled with broader legal issues and factual scenarios, such as claims regarding informed consent, medical malpractice, and institutional negligence.
Final Words About Health Literacy
Even with the new health literacy definition and the hope of new legislation that addresses health literacy, there is still a lot of work to do in the months and years to come. And there is no better time than now for organizations to raise their voices for bringing awareness to health literacy.
As healthcare organizations contemplate this new era of health literacy, they should strive to do the following:
- Gain Knowledge. Learn as much as possible about the new definition of health literacy, and find innovative ways to implement it throughout organizational structures.
- Anticipate that Congress will pass the Cures Act 2.0 (including Section 202: Increasing Health Literacy to Promote Better Outcomes for Patients) to provide legal support for health literacy. Even if the proposed legislation is not passed, anticipate that the bipartisan congressional effort to establish this law will be a promising step for future proposed laws and legal policies for the advancement of effective health literacy mechanisms.
- Be Flexible. This new era of health literacy will bring a lot of changes and challenges. Being flexible about how to respond to health literacy concerns will prepare organizations to more efficiently and effectively break down barriers that prevent equitable health literacy from being a reality for everyone.
Disclaimer: The content in this blog post is being provided for educational and informational purposes only and it should not be construed as legal representation, legal advice, or legal consultation.
About the Author

Karen Alicia Shaw is the Director of Graduate Legal Studies and an adjunct professor at Loyola University Chicago School of Law. She teaches health law-focused legal writing courses, an interdisciplinary seminar on health literacy and health equity, and a socio-legal research and writing course on the rule of law and international development.
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