The downside is that physicians may have to spend valuable appointment time debunking myths found on inaccurate or incomplete websites. For example, in a review of 100 thyroid cancer websites, the information on diagnosis was complete and accurate in only 50. Treatment information met that standard in 47 sites. Only 26 sites provided data on authorship, and just 56 websites cited references.3
Beyond simple facts, online communities may provide emotional support, particularly if patients have limited mobility.4 “They find information from the medical specialists, oncologists, but they also find experiences of other patients, how they cope with their problems, and I think that’s very useful to patients,” said Mies van Eenbergen, an advisor on patient information at the Netherlands Comprehensive Cancer Organisation in Utrecht and a PhD candidate at Tilburg University in the Netherlands, in an interview.
Social media also has good and bad points. According to a recent review by Dr Langford, participation in patient support communities can improve well-being and self-management. Unfortunately, inaccurate information or inappropriate therapies are sometimes the topics most likely to garner likes and shares.5
The challenge for oncologists, then, is to ensure patients find reliable information amidst the variable quality of evidence online. Certain sites are known to be trustworthy (Figure 1). Users can also ask key questions about the source of online information to evaluate a site’s quality. The DISCERN instrument offers one set of questions to help users rate information reliability.6
Figure 1: Selected reliable sites for cancer information.
|Medline Plus (US National Library of Medicine)||https://medlineplus.gov/cancer.html|
|US National Cancer Institute||https://www.cancer.gov/|
|US Centers for Disease Control and Prevention||https://www.cdc.gov/cancer/|
|American Cancer Association||https://www.americancancerfund.org/|
|American Society of Clinical Oncology||https://www.cancer.net/|
Dr Langford suggested starting with Medline Plus, which is run by the National Library of Medicine. Beyond that, “Look for .edu; look for .gov,” advised Jacqueline Grace, MPH, an education training specialist at Children’s Hospital Los Angeles, California, in an interview. “Things from a .com are not always from a reliable source.” The quality of information on .orgs can vary, Grace added, so the advice to focus on .edus and .govs keeps things simple. Many sites cover treatments; those who are looking for trials may choose to start with ClinicalTrials.gov, suggested Grace.
At some hospitals, providing information may be as simple as checking a box on a patient’s electronic health record, so they receive guidance electronically or in the form of a printout, said Dr Langford. However, only one-third of Dutch cancer patients accessed their electronic health records according to a 2017 survey by van Eenbergen and colleagues.1
Some health centers also have resources, such as health educators or medical librarians, who can direct patients to reliable information or help physicians craft handouts. It’s important to match the language to the patient population, noted Grace: “The reading level of the average American is at fourth-grade level.” Yet the study of thyroid cancer websites found that only 2% were comprehensible without a high school education.3 Tools such as the Patient Education Materials Assessment Tool (PEMAT) can help physicians meet the right level in their materials.7