Improvements to Online Health Information Can Help Reduce Barriers to Care for Pancreatic Cancer Patients

BOSTON – The Internet has become a powerful and important resource for daily life. When patients receive a medical diagnosis, particularly a difficult one like pancreatic cancer, the web can be an essential information tool, helping to enable patients to have meaningful discussions with health care providers. However, new research from Beth Israel Deaconess Medical Center (BIDMC) published today in JAMA Surgery suggests that online information about pancreatic cancer is often written at a prohibitively high reading level and lacks accuracy concerning alternative therapies.

“We know from past research that people are strongly influenced by what they read online, and they believe that what they read on the internet will help them make better health care decisions,” said senior author Tara Kent, MD, a pancreatic surgeon at BIDMC and Assistant Professor of Surgery at Harvard Medical School. “Dealing with a diagnosis of pancreatic cancer is difficult enough without asking patients to negotiate PhD-level terms. The concern here is that available web information may, in fact, be adding to existing barriers to care. If patients don’t understand what they’re reading, how can they make the best decisions about treatment options?”

The degree to which patients are empowered by written educational materials depends on the text's readability level and the accuracy of the information provided. A patient's health literacy or ability to comprehend written health information can impact clinical outcomes. Reading materials are rarely written at the sixth to seventh-grade reading level recommended by literacy specialists and multiple national institutions.

Kent and colleagues compared the accuracy and readability of patient-oriented online resources for pancreatic cancer by treatment method and website affiliation, such as privately owned, media, academic or government websites. The researchers conducted an online search of 50 websites discussing five pancreatic cancer treatment methods (alternative therapy, chemotherapy, clinical trials, radiation therapy and surgery). Readability was measured by nine standardized tests, and accuracy was assessed by an expert panel.

“We found that the median readability level was higher than recommended, requiring at least 13 years of education to be comprehended, but only 58 percent of the adult U.S. population has attained this level of education,” said Kent. “These data indicate that online information about pancreatic cancer is geared to more educated groups. The general population and vulnerable groups -- particularly those with low health literacy -- will likely struggle to understand this information.”

The authors also found appreciable differences among website affiliations and among websites discussing treatment methods. Those discussing surgery were easier to read than those discussing radiotherapy and clinical trials. Websites of nonprofit organizations were easier to read than media and academic websites. Nonprofit, academic, and government websites had the highest accuracy, particularly those relating to clinical trials and radiotherapy. Alternative therapy websites exhibited the lowest accuracy scores. Websites with higher accuracy were more difficult to read than websites with lower accuracy.

“This research illustrates one of the challenges incurred in the creation of accurate, yet understandable online information about a complex disease and its treatment options,” the authors wrote. “In the absence of an Internet librarian, health care professionals should acknowledge that online information on aggressive diseases such as pancreatic cancer could be misleading and potentially harmful, and they should assume an active role in the evaluation and recommendation of online resources.”

“Addressing the issue of equitable health literacy is especially critical as we work to close gaps in care among all the communities we serve, and as we continue to work toward empowering patients in the shared decision-making process,” said Kent.

In addition to Kent, researchers include BIDMC investigators Alessandra Storino, MD; Manuel Castillo-Angeles, MD; Ammara A. Watkins, MD; Christina Vargas, MD; Joseph D. Mancias, MD; Andrea Bullock, MD; A. James Moser, MD; and Aram Demirjian, MD, of University of California, Irvine Medical Center, Orange.

Kent’s research is supported by funding from the Alliance of Families Fighting Pancreatic Cancer and the Griffith Family Foundation.