Health Literacy and Social Determinants of Health: Addressing Health Inequities in Liver Cancer Care
By Hannah Lee, M.D.
Dr. Lee received a $250,000 investigator-initiated grant funded by AstraZeneca to support her proposal, “Health literacy and social determinants of health in hepatocellular carcinoma: a patient-centered study.”
As the sixth-leading cause of cancer-related deaths in the United States, primary liver cancer contributes to health disparities and disproportionally affects racial/ethnic minority and socioeconomically disadvantaged groups.
Hepatocellular carcinoma (HCC) contributes to the majority (75%-85%) of primary liver cancer cases. Associated with cancer-related disparities, poor health literacy is a cause for increased health care utilization and mortality as well as communication difficulties between patients and health care providers, poor adherence to health care services and lack of knowledge of disease processes.
Defined as the degree to which individuals have the capacity to obtain, process and understand the basic health information and services needed to make informed health decisions, health literacy is recognized as a national priority by the U.S. Department of Health and Human Services with the release of the “National Action Plan to Improve Health Literacy” as part of the initiative for Healthy People 2020. The National Academy of Medicine has recognized health literacy as an important component of high-quality care services, and has called on partners from both public and private sectors to take action. Globally, the World Health Organization has called for action on the prevention and control of non-communicable diseases through a health literacy development approach involving practitioners, organizations, health systems and policy makers.
Because of the complexity and challenges our patients experience in managing the dual diagnosis of HCC and cirrhosis, understanding the barriers and gaps in HCC care, particularly in health literacy, will allow us to address health inequities. Past studies evaluating health literacy and outcomes have used assessment tools measuring only numeracy and literacy skills. Because health literacy also encompasses personal, cognitive, affective, as well as social domains, it is likely these studies have underestimated the true effect of health literacy on health inequities.
We will use the globally validated Health Literacy Questionnaire, one of the most widely used measurement tools that evaluates the full construct of health literacy to uncover mechanisms behind health inequalities to inform intervention development.
The HLQ is subdivided into the following categories:
- Feeling understood and supported by healthcare providers
- Having sufficient information to manage my health
- Actively managing my health
- Social support for health
- Appraisal of health information
- Ability to actively engage with healthcare providers
- Navigating the healthcare system
- Ability to find good health information
- Understand health information well enough to know what to do
The scale is able to identify any small changes between populations over time, and can be used as a measurement tool to address areas of health, access and equity.
Our collaborative research proposal provides a novel approach to identify gaps and barriers in health literacy, and will allow us to take important steps to better understand both its limitations and strengths in our vulnerable patient population. This will guide our next steps to initiate meaningful patient/ community stakeholder engagement in the different communities we serve.
Our mission is to develop future strategic interventions that are implementable and driven by local wisdom, through a co-design and fit-for-purpose approach, allowing creation of sustainable health literacy responsive programs for our communities to improve health, well-being and outcomes.