Physician Participation Important as Patients Navigate Disease Information Online

When diagnosed with a disease, especially cancer, patients and their families reach out to the internet to equip themselves with the most updated information that can support their understanding and aid with treatment decisions. A new analysis of websites that provide information on pancreatic cancer has, however, found that they overestimate the reading ability of the population and might even misguide them.

Online information is not necessarily regulated or scrutinized—how can one trust its reliability, especially when making life-or-death decisions? Researchers at Beth Israel Deaconess Medical School, Harvard Medical School, and Irvine Medical Center, evaluated the readability and credibility of the information available on 50 websites that discuss 5 treatment modalities for pancreatic cancer: alternative therapy, chemotherapy, clinical trials, radiation therapy, and surgery.

Using 9 standardized tests to compute the readability level of each website with respect to treatment modality and affiliation, the authors reached out to 2 medical and 2 surgical specialists to evaluate the accuracy of the posted information. The following scale was used to rate accuracy:

1 — <25% information is accurate

2 — 26-50% information is accurate

3 — 51-75% information is accurate

4 — 76-99% information is accurate

5 — 100% information is accurate

Describing the hypothesis that formed the basis of their study, senior author Tara Kent, MD, a pancreatic surgeon at Beth Israel, said, “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. 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 analysis found a wide variation in readability and accuracy based on the treatment modality and the website’s affiliation. Information describing surgical procedures (median readability level, 13.7; interquartile range [IQR], 11.9-15.6) was easier to read than that on radiotherapy (median readability level, 15.2 [IQR, 12.8-17.0]), according to the results. Further, websites maintained by non-profit organizations (median readability level, 12.9 [IQR, 11.2-15.0]) and those that were privately owned (median readability level, 14.0 [IQR, 12.1-16.1]), were significantly easier to read than media websites (median readability level, 16.0 [IQR, 13.4-17.0]). Information on academic websites (median readability level, 14.8 [IQR, 12.9-17.0]) was also more complex than on websites of nonprofits, according to this evaluation.

“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&mdash;will likely struggle to understand this information.”

With respect to accuracy of posted information, privately owned and media websites scored behind nonprofit, government, and academic institutions.

“In the absence of quality control on the Internet, physicians should provide guidance to patients in the selection of online resources with readable and accurate information,” the authors conclude in their paper published online in JAMA Surgery.

Reference

Storino A, Castillo-Angeles M, Watkins AA, et al. Assessing the accuracy and readability of online health information for patients with pancreatic cancer [published online May 4, 2016]. JAMA Surg. doi:10.1001/jamasurg.2016.0730.