Research has shown that 80% of internet users look for health-related information on the web. However, the ability to understand this material depends on each patient’s health literacy — the ability to process and understand basic health information.
It is estimated that nearly 80 million adults have limited health literacy and may have difficulty understanding the health information that they encounter — from online sources to pamphlets. For this reason, the American Medical Association (AMA) recommends the adoption of universal literacy precautions, such as creating materials at or below a sixth grade reading level, to meet the needs of the general public.
Patients who are educated about their treatment options are more likely to participate in shared decision-making, which can significantly improve their quality of life.
A Massachusetts General Hospital research team led by Randy C. Miles, MD, MPH, and Constance Lehman, MD, PhD, recently investigated the readability of patient education content related to breast density on the top 50 websites that appear on Google when searching for the term “breast density.”
They found that the average readability of patient education materials related to breast density ranged from 8.5 years (eighth grade) to 16.5 years (senior year of college).
The team suggests the complexity of this information may hinder productive patient-physician conversations about treatment and prevention strategies. It can also worsen existing health disparities when it comes to breast cancer screening and outcomes.
Patient Education vs. Patient Awareness
To understand the connection between health equity and accessibility of patient information, it is essential to understand the difference between the terms “patient education” and “patient awareness,” Dr. Miles says.
Patient awareness involves knowing about a given condition and what treatment options are available. Patient education is the process of ensuring more in-depth understanding, in which the patient feels confident in their knowledge about their current disease state and understands the implications of their treatment choices.
“The goal of patient medical education is to prepare patients with the knowledge to make informed health care decisions,” he explains.
Patients who are educated about their treatment options are more likely to participate in shared decision-making, which can significantly improve their quality of life. “In terms of health equity, it is important to understand that some patients may need additional resources or consultation to meaningfully participate in this process,” Dr. Miles says.
Numerous studies have shown that patients who do not understand their disease have worse outcomes. Patients with limited health literacy, who often come from traditionally underserved populations, are at particular risk, supporting the importance of creating educational materials that patients with varying educational backgrounds can understand.
Eliminating Barriers to Care
Dr. Miles was born in a rural town in North Carolina, where he witnessed disparities in health and how they affect patients’ diagnoses and outcomes. Seeing his grandmother die in her mid-fifties due to cancer, in addition to his experiences leading medical mission trips to Haiti and the Dominican Republic, have served as fuel for his goals of addressing health care disparities in his career. Dr. Miles says while barriers to care that he has observed in the US and internationally may have arisen from different sources, they often end in the same outcome: suffering and premature death from treatable conditions.
Dr. Miles thinks that efforts to make educational materials available in multilingual, easy to understand formats is crucial to serving diverse populations.
Dr. Miles has focused his research on eliminating health barriers in the breast imaging field. “My public health background provides me the ability to step back and view patients at the population level,” he says.
As part of their research, they have made recommendations to improve patient education materials by simplifying text to provide a glossary that helps readers understand complex terms. Adding visuals such as pictures, diagrams and charts can also help improve overall patient comprehension.
The team is currently in the process of publishing a paper on Spanish patient education materials related to breast cancer. One interesting finding has been that materials in Spanish are written in a lower average reading level than those in English. Dr. Miles thinks that efforts to make educational materials available in multilingual, easy-to-understand formats is crucial to serving diverse populations. “It’s our job as physicians to identify barriers to patient comprehension and to use all resources available, whether that includes medical interpreters, ancillary staff, or online educational materials to ensure patients fully understand their conditions and treatment options,” he says. “This is a big step in helping to address existing disparities in care.’’ He adds, “As the U.S. becomes increasingly diverse, more work needs to be done in this area.”
The Crucial Role of Regular Screenings
Breast cancer screening examinations at Mass General decreased earlier this year due to the COVID-19 pandemic but have begun to pick up again recently. Dr. Miles encourages women to keep up with their regularly scheduled mammograms. “The breast imaging department at Mass General is taking full COVID-19 precautions to keep patients safe, when they arrive for their screening examination,” he says.
“Breast cancer has nearly a 100% survival rate, if we catch it at its earliest stages.”
The American College of Radiology recommends women receive a mammogram every year starting at age 40. However, if a patient has a strong family history or is considered high risk, they may need to begin screening earlier.
Dr. Miles says it is important to have discussions with your primary care doctor about your personal risk of developing breast cancer by age 30, and he encourages women and men to be vigilant about seeing their doctor if they develop new breast symptoms including feeling a breast lump or experiencing nipple discharge.
“It is important that women stay up to date with mammography screening,” he says. “Breast cancer has nearly a 100% survival rate, if we catch it at its earliest stages.”
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