Improving Health Literacy: Breaking Barriers To Quality Cancer Care

By Dany Habr, MD, oncology chief medical affairs officer, Pfizer

When it comes to cancer care, the spotlight is often on what’s new, from the latest methods to detect and diagnose cancer earlier to groundbreaking treatments that have changed the lives of people living with cancer. However, an old challenge persists in the background. Limited health literacy can stand between these patients and these breakthrough treatments. Patients with low literacy are more likely to delay care, for example, or struggle to find healthcare providers who will see them.¹ A lack of health literacy could also be a barrier to participation in clinical research.² For example, patients may find themselves excluded from clinical trials if they don’t fully stick to aftercare guidelines due to a decreased understanding of what is required.³

Health literacy is a person’s ability to find, understand, and use information and resources to help them make healthcare decisions for themselves and others.⁴ Today, low levels of health literacy remain a major barrier to accessing optimal cancer care, particularly among underserved communities, such as people from ethnic minority groups and those with language barriers, older adults, and people living in rural areas with limited access to broadband internet.⁴ Limited health literacy can also hinder people from getting involved in shared decision-making with their healthcare providers — something that multiple studies have found many people with cancer want to do.^5-7

Researchers have found that inadequate health literacy is linked to delays in cancer screenings and care and a poor understanding of how cancer can be prevented or treated.⁸

Poor Health Related To Low Health Literacy

Health literacy levels are not routinely assessed in the U.S. According to the only national data available on health literacy skills in the U.S., published by the Department of Education more than 15 years ago, adults who self-reported poor health also had the most limited literacy, numeracy, and health literacy skills.⁹ Although general literacy is not a perfect mirror of health literacy, we might lean on general literacy data as a proxy in the absence of current health-specific data. Only 12% of U.S. adults scored at the highest literacy proficiency levels, according to the most current data from the DOE, suggesting that low health literacy could affect broad swaths of the population.

The negative effects of low health literacy, compounded by other factors such as language barriers, can lead to miscommunication between patients and healthcare providers. This, in turn, can result in a series of negative consequences for people living with cancer.¹⁰

Meanwhile, asymptomatic patients may not understand why they need treatment when they are not feeling sick or may not partake in preventive measures that could ward off certain diseases. These patients could put off care until their symptoms worsen and their condition progresses. Other patients, particularly those who belong to ethnic minorities, may avoid seeking care entirely because of an understandable mistrust of the healthcare system and clinical research due to historical events.

As underserved groups grapple with these kinds of compounding problems, they face being left behind by medical advancement. The increase in the number and variety of treatment options, coupled with the increasing complexity of science, technology, and communication channels, has created the potential for the health literacy gap to widen even more. These changes spark greater urgency to improve health literacy.

How Pharma And Its Healthcare Partners Can Help

Now, more than ever, is the time for the entire healthcare ecosystem to engage in a focused effort to empower a more health literate population. Often, the first obstacle is that people don’t know that clinical trials could be an option for them. To increase awareness and improve access to our trials, Pfizer launched websites that provide potential volunteers with a searchable database of all Pfizer trials in English and Spanish. Additionally, given the ubiquity of social media, we meet potential participants where they are through a Facebook page dedicated to educational content on clinical trials.

Of course, the messenger is as important as the message, particularly in underserved and underrepresented groups, such as people who are Latino/Hispanic or Black/African American. We are partnering with trusted voices in communities — e.g., from grassroots organizations, faith-based programs, and Minority-Serving Institutions (MSIs), including Historically Black Colleges and Universities (HBCUs) — to raise awareness about the importance of participation in clinical research. We are also funding initiatives to increase diversity among clinical trial investigators, who not only bring diverse perspectives to clinical research but also may have a stronger rapport with participants.

As a community, we should implement health literacy practices from the very beginning of clinical research, developing patient-focused materials using common terminology and language that falls in the appropriate reading level and partnering with patients to make sure their voices and experiences are accurately reflected in research. Pfizer’s This is Living with Cancer website features information on specific cancers and financial literacy resources in Spanish and English, including articles and tools to help people understand the complex aspects of cancer care, such as clinical trials, abstracts for research articles, and biomarker testing.

Recently, I published a paper in Oncology and Therapy that discusses the important role of effective scientific communications in the dissemination of clinical trial information to patients.¹⁰ As part of our longstanding efforts to tailor scientific communications to patients with varying levels of clinical literacy, Pfizer has been creating plain language summaries (PLS) for research articles and congress abstracts that explain Pfizer research findings in simplified language, using visuals and graphs to help distill the data for lay audiences. The company has been working to ensure PLS are shared more broadly and are accessible, including through publication in open access journals. Further, PLS are shared at medical conferences and are being translated into other languages. We are encouraged to see our peers in the healthcare community creating PLS, with the goal of helping more people understand research. At the same time, we are proud to elevate the patient’s voice and partnership in clinical research by sponsoring patient poster track programs at congresses such as the European Association of Urology, which give patients and patient advocates a platform to share their perspectives on their care.

And as we tailor our communication strategies to different communities, it is crucial that we incorporate a diverse range of perspectives into education and awareness content. At Pfizer, we convened 80 people, from patient advocates and health literacy experts to multicultural community leaders and people who had never participated in a clinical trial, to review components of our Diversity in Clinical Trials Toolkit. We applied their insights and edits to patient-facing materials and platforms, including the Breakthroughs for All^TM Education Session presentation that provides a general overview of clinical trials and the importance of diverse and inclusive participation. These virtual sessions took place in May, August and November 2022 to a diverse audience primarily comprising Latino and Black attendees, and we look forward to holding our first full session in Spanish in February.

We and our peers should also continue developing community education programs focused on cancer prevention and treatment in underserved communities, ensuring that resources are directly relevant to their target audience. In 2019, we launched the Pfizer Oncology Patient Centricity Ecosystem (POPCE), an initiative that helps us understand patients and their needs.

Through POPCE, Pfizer colleagues work closely with advocacy leaders and national stakeholders, to understand the needs of patients and what information they may need to understand, prepare for and, ultimately, meet the financial, emotional, and practical challenges that arise in their cancer journey. For example, our POPCE health literacy team has put together a clearinghouse for financial information: a collection of third party resources to help patients, caregivers, and healthcare professionals navigate the financial implications of their diagnosis and understand some of the resources that may be available to them.

These resources could help demystify the nuances of evaluating and selecting health insurance, managing medical bills, and understanding potential work protections and disability options. Pfizer, in partnership with Triage Cancer and Equitas, developed a website that covers these topics for patients and caregivers to access financial literacy resources that are actionable.  We hope that this free resource will help empower patients, with support from their caregivers and providers, to take positive action when navigating their healthcare finances.

We invite our colleagues beyond pharmaceutical companies, from payers to technology companies, to consider how they can help improve health and financial literacy levels.

Making An Impact On Health Literacy

An enhanced understanding of diagnosis, treatment options, and aftercare planning can empower patients and caregivers to take an active role in shared healthcare decisions. It could also lead to greater involvement of underrepresented groups in clinical studies, which will not only enable individual access to potential new treatments in development but also will help scientists and researchers design medicines tailored to the needs of various patient groups.

Improving health literacy may help address a major barrier to optimal cancer care and reduce treatment disparities for patients across cancer types, no matter their age, ethnicity, or where they live. We look forward to continuing our collaboration with stakeholders across the healthcare industry, as well as with the patient community as we strive to improve health literacy and give every patient their best chance at navigating cancer care.

References:

1. Levy H, Janke A. Health Literacy and Access to Care. J Health Commun. 2016;21(Suppl): 43-50.
2. Burks AC, Keim-Malpass J. Health literacy and informed consent for clinical trials: a systematic review and implications for nurses.
3. The role of health literacy in cancer care: A mixed studies systematic review. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8589210/
4. What is Health Literacy? Centers for Disease Control and Prevention. https://www.cdc.gov/healthliteracy/learn/index.html
5. Hahlweg P, Kriston L, Scholl I, et al. Cancer patients' preferred and perceived level of involvement in treatment decision making: an epidemiological study. Acta Oncol. 2020; 59: 967- 974.
6. Ihrig A, Maatouk I, Friederich HC, et al. The treatment decision making preferences of patients with prostate cancer should be recorded in research and clinical routine: a pooled analysis of four survey studies with 7169 patients. J Cancer Educ. 2022; 37: 675- 682.
7. Tamirisa NP, Goodwin JS, Kandalam A, et al. Patient and physician views of shared decision making in cancer. Health Expect. 2017; 20: 1248- 1253.
8. Humphrys E, Burt J, Rubin G, Emery JD, Walter FM. The influence of health literacy on the timely diagnosis of symptomatic cancer: A systematic review. Eur J Cancer Care (Engl). 2019;28(1):e12920. doi:10.1111/ecc.12920
9. Understanding Literacy & Numeracy. https://www.cdc.gov/healthliteracy/learn/UnderstandingLiteracy.html
10. Habr, D., Wolf Gianres, B., Schuler, K. et al. Patients at the Heart of the Scientific Dialogue: An Industry Perspective. Oncol Ther 2023

About The Author:

Dany Habr is senior vice president and oncology chief medical affairs officer at Pfizer, overseeing the oncology portfolio and medical organization. He has co-authored 43 manuscripts and more than 80 abstracts in the fields of hematology-oncology and health equity and has presented at major medical conferences.