By Wen-ying Sylvia Chou, PhD, MPH
The NCI has participated in the FOA “Understanding and Promoting Health Literacy” since its inception. As the Program Contact for this FOA – I like to call myself the NCI’s “listing agent” for this FOA – I absolutely enjoy speaking to investigators about their proposal ideas, discussing alternative study section/FOA options, and also debriefing and brainstorming about next steps after review. Keep those email inquiries coming!
From a program’s perspective*, there definitely has been continued interest and enthusiasm for studying health literacy from the investigators’ community, as evidenced by the frequent inquiries I receive and the 100+ applications to the current program announcement (PAR) since 2010.
NCI health literacy portfolio themes
A few themes emerged among recent NCI applications, including a focus on health disparities (health literacy is often framed as a major contributor to health disparities) and an emphasis on health literacy intervention development (as opposed to measurement or descriptive work). Regarding the behavioral domains of these interventions, secondary prevention/communication about cancer screening (colorectal cancer screening in particular) is the most common, reflecting in part the focus of NCI’s cancer prevention efforts in the early 2000s. In contrast, fewer health literacy studies focus on interventions aimed at primary prevention, patients, or cancer survivorship, both during and after cancer treatment. In terms of populations of interest, there appears to be an equitable distribution across racial/ethnic groups.
Trends aside, it is difficult to capture a synopsis of the current portfolio given the diversity of topics and approaches, but I would like to highlight just a few examples of funded health literacy proposal coming through the PARs:
- Dr. Megha Ramaswamy’s R01 (Sexual Health Empowerment for Cervical Health Literacy and Cancer Prevention) focuses on a health literacy intervention. Incarcerated women are four times more likely to have cervical cancer than non-incarcerated women, and limited health literacy is cited a key driver of this stark disparity. This project tests a sexual health empowerment intervention to improve cervical health knowledge, reduce barriers to screening, and improve self-efficacy.
- Dr. Tentine Sentell’s R03 (Health Literacy and Cancer Screening Disparities in Asian American Populations) tested whether health literacy levels affect breast, cervical, and colon cancer screening rates within and between Asian American populations. Although cancer is the leading cause of death for Asian Americans, this population has the lowest rates of cancer screening in the U.S. The study sought to examine whether health literacy can explain this disparity and provide a potential target for future interventions.
- Beyond cancer prevention, a R03 project led by Dr. John Gore, addresses the challenges faced by many men diagnosed with prostate cancer, in communicating side effects of treatment. The project tests the utility of electronic summary “dashboards” which integrate the reporting of health-related quality of life, with the goal of improving patient-provider communication, patient self-efficacy, and the timing of therapy delivery.
Evaluating the portfolio against the current priorities of our Health Communication and Informatics Research Branch, we noticed that a few areas of health literacy have not seen many strong applications.
NCI health literacy portfolio: What’s missing
To date, 49 out of 64 funded health literacy proposals containing the development and/or testing of an intervention focused on the patient/individual. Put another way, only 15 funded health literacy applications focused on the family/provider/health care system or public health infrastructure. Development and testing of multi-level health literacy interventions, particularly research initiatives which seek to address health literacy at the systems level, by creating an (information) environment to enable health, would inform public health efforts in identifying sustainable programs for positive behavior change.
Secondly, despite the growth of technology and new media, there have been limited applications testing new/novel communication strategies and channels (such as social media-based interventions). Specifically, out of the 8 NCI funded applications from 2010-14, only two studied the role of technology-mediated communication. Moreover, the intersection between health literacy and technology literacy deserves further investigation. This includes understanding how diverse populations (and those with varying degrees of health literacy) access and use health information, and how technology-mediated interventions targeting specific populations can be optimized to reduce cancer burden.
Components of a successful health literacy proposal
Finally, as someone who has closely observed health literacy study section discussions, I have a few comments on what seems to distinguish EXCELLENT APPLICATIONS from the rest, and I would like to share just a few of my favorite characteristics of well-scored applications.
First, across the review criteria, reviewers have to be unanimously convinced by a proposal’s significance and impact. That is, reviewers want to see how a proposed study may contribute, directly or indirectly, to the goal of reducing burden from cancer, such as generating evidence to improve the current clinical or public health practice, or understanding and addressing barriers to effective and equitable communication for underserved populations. While almost all applications may generate reviewers’ interest, for a health literacy study to gain support, the answer to the “so what?” question has to clear, front and center. Secondly, since health literacy as a field intersects with numerous disciplines (from communication, anthropology, psychology, sociology, to public health), the composition of the review group for the PARs tends to be quite diverse. Many have worked across disciplinary boundaries. Therefore, reviewers want to see a strong interdisciplinary team, where members bring complementary expertise to tackling the research questions.
*Disclaimer: All views expressed here are based on observations and informal discussions with my colleagues, and they do not reflect an official NCI stance. Also, I wish to thank Angela Falisi, Maureen Clark, and Carol Sienche for comments and feedback on drafts of this post.
About the Author
Wen-ying Sylvia Chou, PhD, MPH
Program Director, Health Communication and Informatics Research Branch, NCI
As a sociolinguist and mixed methods health researcher, Sylvia has published extensively in the areas of social media, health literacy, and patient-provider communication. As a Program Director, she works closely with health communication researchers with interests in health literacy, technology and media, and health disparities. Her NCI faculty page lists her research and professional interests.