How to Help Patients With Cancer Find Trustworthy Information Online

For individual patients, it’s important to assess e-health literacy: their ability to find, understand, and apply knowledge found in electronic sources. “Everyone has a different level of health literacy,” said Grace, and added that this capability may be diminished in the immediate wake of a cancer diagnosis.

In Dr Keinki’s survey, 43% of patients didn’t know how to rate the reliability of health information.² In a 2003 national assessment of adult literacy, only 12% of people were considered “proficient” at skills such as reading preprocedure instructions or interpreting a prescription label.⁸

There are straightforward ways to assess a person’s e-health literacy. At Children’s Hospital Los Angeles, patients and caregivers undergo a standard assessment, in which an item asks, “How often do you need help understanding medical information?” Doctors can check the answer to better tailor information to each family.

Physicians should also consider how much information patients want, said van Eenbergen. For example, some people might not be ready to hear prognosis information and statistics. Her hospital is piloting a website where patients, once they’re prepared, can enter their characteristics to see a prognosis. For example, one could enter cancer type, stage, year of diagnosis, and age, for a semi-customized outlook report.

Not all patients will go online, however, so doctors should ensure those who don’t still get the information they need. Older people, racial and ethnic minorities, and those of lower socioeconomic status may be less likely to use the internet for health information.⁹ 

In addition to providing guidance on reliable resources, physicians may also want to communicate new findings to patients through novel channels. Many medical papers are inaccessible, either due to jargon-laden language, a journal paywall, or both. Publishing in open-access journals can be expensive for physicians, especially if the authors are at a more junior level or just starting their careers.

Another option, suggested Dr Langford, is to reach out to the public directly, or through media. For example, researchers might consider giving public lectures or sharing results on The Conversation, a nonprofit website that publishes scholar-written content.

Participating in media interviews can also get information out. For those who feel underqualified to speak with a reporter or sit in front of a camera, many hospitals and academic centers have a communications staff who can provide training or a practice interview. Training workshops are often available via professional organizations or at conferences, or through programs such as the Alan Alda Center for Communicating Science at Stony Brook University in New York.

Social media, such as Twitter, also offers researchers a way to share their work with a wide audience. For cancer discussions, there are several agreed-upon hashtags that indicate what the topic is, for example, breast cancer (#bcsm) or leukemia (#leusm).¹⁰

Although some of the articles and posts using these tags may still point to paywalled articles, patients can try to request the full articles through other routes, such as through the lead authors or through the publishers.

Patients should do their due diligence, too — not just in terms of website reliability, but also as it relates to physician biases. One option is to look up providers through the Centers for Medicare and Medicaid Services’ Open Payments website, to gauge whether certain conflicts of interest or financial relationships with medical companies could have the potential to influence an oncologist’s recommendations.

Oncologists can take an active role by recommending trusted information sources to patients, and ensuring they communicate new research results in a language and format that patients can access and understand.

References

1. van Eenbergen MCHJ, Vromans RD, Boll D, et al. Changes in internet use and wishes of cancer survivors: A comparison between 2005 and 2017 [published online October 3, 2019]. Cancer. doi: 10/1002/cncr.32524
2. Braun LA, Zomorodbakhsch B, Keinki C, Huebner J. Information needs, communication and usage of social media by cancer patients and their relatives. J Cancer Res Clin Oncol. 2019;145(7):1865-1875.
3. Chang KL, Grubbs EG, Ingledew PA. An analysis of the quality of thyroid cancer websites. Endocr Pract. 2019;25(10):1003-1011.
4. Holmes MM. Why people living with and beyond cancer use the internet. Integr Cancer Ther. 2019;18:1534735419829830. doi: 10.1177/1534735419829830
5. Langford AT, Roberts T, Gupta J, Orellana KT, Loeb S. Impact of the internet on patient-physician communication. [published online September 30, 2019]. Eur Urol Focus. doi: 10.1016/j.euf.2019.09.012
6. The Discern Instrument. Quality criteria for consumer health information. Copyright 1997. Accessed December 2, 2019.
7. Agency for Healthcare Research and Quality. The patient education materials assessment tool (PEMAT) and user’s guide, version 1.0. Last updated July 2019. Accessed December 2, 2019.
8. Kutner M, Greenberg E, Jin Y, Paulsen C. The health literacy of America’s adults: results from the 2003 National Assessment of Adult Literacy. 2006. https://nces.ed.gov/naal/health_results.asp. Accessed November 18, 2019.
9. Bailey SC, O’Conor R, Bojarski EA, et al. Literacy disparities in patient access and health-related use of internet and mobile technologies. Health Expect. 2015:18(6):3079-3087.
10. Katz MS, Anderson PF, Thompson MA, et al. Organizing online health content: Developing hashtag collections for healthier internet-based people and communities. JCO Clin Cancer Inform. 2019;3:1-10.