A patient’s being able to find, understand and use information and services within the health care system is vitally important for the patient’s care, health, and safety. Whether the information is about locating a health care provider who is taking new patients or information about a particular health concern, having access to such material is essential.
To focus further on this concern, a new Journal of Cardiac Failure study, “Readability and Non-English Language Resources of Heart Transplant Center Websites in the United States,” analyzes how cardiac care resources are often inaccessible to limited English and lower income patients, people already at high risk for cardiac disease and heart failure, and are clear examples of health inequities and disparities of care.
According to the Journal:
“Health literacy is associated with heart failure (HF) care and outcomes. Online resources offer important educational materials for patients seeking access to heart transplantation but tend to be complex and potentially ineffective for non-English speakers and those with low reading levels. The purpose of this study was to evaluate both the readability of patient-level information posted on United States heart transplant center websites and the availability of non-English resources…
Individuals and populations affected by structural racism and discrimination, such as racial and ethnic minorities and those with limited English proficiency, are disproportionately impacted by the disease burden of heart failure (HF).
Centers for Medicare and Medicaid Services [CMS] and the United States Department of Health and Human Services have shifted focus to redirect resources to better achieve equitable care through addressing inequities in social determinants of health (SDOH).”
According to CMS, the five health equity priorities for reducing health disparities “… reflect a key area in which CMS stakeholders from communities that are underserved and disadvantaged express that CMS action is needed and critical to advancing health equity. “
The five priorities are:
Priority 1: Expand the Collection, Reporting, and Analysis of Standardized Data;
Priority 2: Assess Causes of Disparities Within CMS Programs and Address Inequities in Policies and Operations to Close Gaps;
Priority 3: Build Capacity of Health Care Organizations and the Workforce to Reduce Health and Health Care Disparities;
Priority 4: Advance Language Access, Health Literacy, and the Provision of Culturally Tailored Services; and
Priority 5: Increase All Forms of Accessibility to Health Care Services and Coverage
According to CMS: “Together, the five priorities provide an integrated approach to build health equity into existing and new efforts by CMS and our stakeholders.”
In its study, the Journal of Cardiac Failure identifies Priority 4, Health Literacy, as having particular salience. Indeed, if people cannot easily access understandable cardiac care information, health literacy is a likely cause. As a result, these people will invariably experience health care inequities and degraded health care.
As the study notes:
“Recent research has shown low health literacy to be prevalent within marginalized communities and is associated with poor outcomes in HF [heart failure]. For instance, poor health literacy is found in over 39% of patients with HF and is associated with lower medication adherence and higher rates of mortality and readmission.”
The Journal study emphasizes an organizational health literacy obligation to patients, making health literacy the responsibility of health care entities to provide accessible, understandable health information for limited English proficient people. Indeed, such an approach is more holistic than most, and requires that meaningful institutional steps be taken to enhance the health literacy of populations that regularly experience difficulty obtaining linguistically accessible information and materials that are vital to their well-being.
“Historically, health literacy has focused on the ability of patients to understand health information. However, there has been an evolving focus on evaluating the role of organizational contributions to health literacy.
Organizational health literacy describes the degree to which organizations equitably enable individuals to find, understand and use information and services. This emphasizes the responsibility of organizations to understand and take a role in improving health literacy in the populations they serve.
More than 74% of all adults in the U.S. use the internet, and 61% use it to research medical-related information: National Center for Health Statistics; 2011.
Published here: https:// www.cdc.gov/nchs/products/databriefs/db66.htm#:»: text=Research%20has%20shown%20that%2074,specific% 20medical%20condition%20or%20problem.
Additionally, over 67 million people in the United States speak a foreign language at home: Center for Immigration Studies; 2022: https://cis.org/Report/673-Million-United-States- Spoke-Foreign-Language-Home-2018.
Heart transplantation is the gold standard for advanced therapy for HF, and timely access and referral are key to patients’ outcomes. Transplant centers’ websites are widely available resources for patients and could encourage underserved populations to seek timely care. However, whether current transplant center websites have adequate readability and the availability of additional language resources to meet the information needs of patients with HF is unknown.”
Of course, it is axiomatic that people need access to health care information in languages they understand. Having the language services expertise and capacity to provide such multi-lingual information accurately is vital to being able to effectively care for patients, regardless of English language proficiency. The COVID pandemic painfully revealed this seemingly obvious reality.
The question is, then, what next? The Journal study takes a proactive approach to this question by understanding health literacy and urging measures to lower literacy barriers to accurate health care information.
According to the study:
“[B]ecause most patients still refer to online sources for medical information, and doing an internet search for transplant centers near them is likely to be a first step in seeking care, improving the readability and availability of non-English resources is critical…
Establishing a focal place where patients can receive reliable and professionally translated information about heart transplantation will improve the transplant communities’ contributions to organizational health literacy for patients with HF. [Heart Transplant] Centers should immediately reevaluate the appropriateness of their online resources for optimal readability and availability of non-English resources. Centers should also review non-patient-facing material to ensure adequate readability and resources to support patients. There is also the potential to increase awareness of heart transplant and facilitate access to transplant centers in a manner that could improve equity…
Most heart transplant centers have grossly inadequate readability and availability of non-English online resources for patients. Online resources are a critical component in the ways in which patients receive and understand medical information. Organizations have a responsibility to provide accessible health-related information that accommodates those with low reading ability and non-English languages. Urgent attention is needed to revamp online educational materials for patients considering heart transplantation so as to achieve more equitable access to care.”
© Bruce L. Adelson 2023. All Rights Reserved The material herein is educational and informational only. No legal advice is intended or conveyed.
Bruce L. Adelson, Esq., is nationally recognized for his compliance expertise. Mr. Adelson is a former U.S Department of Justice Civil Rights Division Senior Trial Attorney. Mr. Adelson is a faculty member at the Georgetown University School of Medicine and University of Pittsburgh School of Law where he teaches organizational culture, implicit bias, cultural and civil rights awareness.
Mr. Adelson’s blogs are a Bromberg exclusive.