The search engine giants, Dr. Google or Dr. Bing, are visited by most of our patients before seeking medical help. In 1976, medical student Tom Ferguson, MD, first coined the term e-Patient. It means a health consumer who uses the Internet to gather information about a medical condition for themselves or on behalf of family and friends and uses electronic communication tools to cope with medical conditions. Dr. Ferguson described e-Patients as “empowered medical consumers.”1
Dr. Taru Saigal
During the COVID-19 pandemic, social media and networking platforms – such as Facebook, Twitter, Instagram, Snapchat, YouTube, WhatsApp, online health support groups – are used increasingly by e-Patients to gather critical health information. Health care providers often take a conflicted stand on the use of social media. Though we want our patients to read about their illnesses and make informed choices, we often get frustrated by misdiagnoses, misinformation, and disinformation that comes with it.
According to a study investigating the differential diffusion of news stories distributed on Twitter from 2006 to 2017, fake news was considered more novel than true news, and people were more likely to share novel information.2 Bots accelerated the spread of true and fake news at the same rate, implying that fake news spreads more than the truth because humans, not robots, are more likely to spread it. Social media has promoted some of the best health campaigns, like public cancer awareness, the ALS Ice Bucket Challenge, World Heart Day, and others. At the same time, it has also provided a platform for antivaccination activists, dangerous and unproven alternative cancer therapies, weight loss pills, and nutrition plans.
According to a Pew Research Center survey, 72% of adult Internet users had searched online for information about a range of health issues of their own or for others in the past 12 months.3 A survey from 2019-2020 showed that those who relied on social media for news were among the least knowledgeable about key facts during the COVID-19 outbreak.4 About 74% of public posts about COVID-19 were linked to news organizations, while just 1% linked to health and science sites.5 While social media has emerged as one of the most significant health information sources, it famously has only a few safeguards in place against medical misinformation. Requiring responsibility and regulations for accurate or evidence-based information walks a thin line on infringing freedom of speech. Medical misinformation related to COVID-19 has become as contagious as the virus itself.
In February 2020, the World Health Organization warned that a massive ‘Infodemic’ had accompanied the COVID-19 outbreak, with an overabundance of information, some accurate and some not, making it difficult for people to find reliable sources and trustworthy information.6 The Black immunity myth, groups opposing vaccines, campaigns against 5G mobile phone networks, suggestions that SARS-CoV-2 was an engineered bioweapon, and online rumors leading to mob attacks in India and mass poisonings in Iran are some of the misleading health information that has circulated related to COVID-19.
In the Web 2.0 era, in which credible health information comes packaged with divisive and misleading information, social media’s full impact on health care, health outcomes, and mental health has yet to be explored. Social networks and media sharing networks have recently announced initiatives to stop misinformation and disinformation by fact-checking, flagging, issuing warnings, and deleting misinformation or misleading content. Providing links to more and correct information and partnering with health and science organizations can also encourage the spread of verifiable information.
While we have yet to see if social media safeguards are adequate, the medical community needs to proactively educate patients on the appropriate use of social media for health information, e-Health literacy, and media health literacy. Like health care providers evaluating scientific papers, we need to cultivate e-Patients’ ability to seek, evaluate, understand, and convey health information from electronic sources. Although the measurement and training tools for e-Health and media health literacy are still scarce, a good place to start could be to have simple conversations with patients. Encouraging patients to critically analyze online information, use credible social media sources, and recognizing the warnings, red flags, and links on unreliable information are some of the discussions worth considering. Equally important is to discourage patients from changing health behaviors or practices based on unverified social media resources and discussing the possible impact of medical misinformation.
A practical approach for e-Patients could be to ask the Five Ws, considered fundamental in information gathering: Who, What, Why, When, and Where.7,8
- Who runs the website? Examine the authors, sponsors, and sources. Federal agencies’ website addresses end in “.gov,” educational institutions maintain “.edu,” large professional or nonprofit organizations often use “.org,” and commercial websites use “.com.”
- What is offered, and What is the evidence? Does it provide unbelievable solutions or quick, miracle cures?
- Why was the site created? Is the mission or goal to inform, explain, or sell health or medical products? Check details on “About This Site” or “About Us.”
- When was the information written or the webpage last updated?
- Where are the privacy policies? Is your privacy protected?
The anonymity of sources, sponsors, financial interests, or the lack of medical credentials and reputable medical research, the use of testimonials as evidence, outdated or incomplete information, and emotional or exaggerated language should raise suspicion about the reliability of the information. Tools like the online tutorial and a checklist from the National Institute of Health’s National Library of Medicine can also be offered to e-Patients to learn how to evaluate health information online.9,10
Online health support groups widely used by patients can be an additional layer of support but can also be a source of misinformation. Since they have fewer gatekeepers than traditional face-to-face communication, keeping a check on the credibility of the information can be difficult. Support groups affiliated with local hospitals or national organizations, or those endorsed by well-known scientific societies, can be encouraged instead of less credible sources. Some online support groups, run by non–health care professionals but with experienced and reliable scientific panels, can be useful resources. However, patients must check for the credibility and reliability of the information.
Lastly, just as hospitalists take a social history of our patients, we could also ask for a “social media history” to understand patients’ sources of health information. We can then guide them toward more credible sources to make them truly empowered medical consumers.
Dr. Saigal is a hospitalist and clinical assistant professor of medicine in the division of hospital medicine at the Ohio State University Wexner Medical Center, Columbus.
References
1. Nelson R. Informatics: Empowering ePatients to drive health care reform – part I. Online J Issues Nurs. 2016 Sep 13;21(3):9.
2. Vosoughi S et al. The spread of true and false news online. Science. 2012;359(6380):1146-51.
3. Fox S. The social life of health information. Pew Research Center: Fact Tank. 2014 Jan 15. Accessed 2020 Jul 31.
4. Mitchel A, Jurkowitz M, Oliphant JB, Shearer E. Americans Who Mainly Get Their News on Social Media Are Less Engaged, Less Knowledgeable. Pew Research Center: Journalism & Media. 2020 Jul 30. Accessed 2020 Jul 31.
5. Stocking G, Matsa KE, Khuzam M. As COVID-19 Emerged in U.S., Facebook Posts About It Appeared in a Wide Range of Public Pages, Groups Pew Research Center: Journalism & Media. 2020 Jun 24. Accessed 2020 Jul 31.
6. Munich Security Conference. World Health Organization. 2020 Feb 15. Accessed 2020 Jul 31.
7. Levin-Zamir D, Bertschi I. Media health literacy, eHealth literacy, and the role of the social environment in context. Int J Environ Res Public Health. 2018 Aug 3;15(8):1643.
8. Online Health Information: Is It Reliable? National Institute on Aging, National Institutes of Health. 2018 Oct 31. Accessed 2020 Aug 10.
9. How To Evaluate Health Information on the Internet: Questions and Answers. Office of Dietary Supplements, National Institutes of Health. 2011 Jun 24. Accessed 2020 Aug 10.
10. Evaluating Internet Health Information: A Tutorial From the National Library of Medicine. Medline Plus. 2020 Mar 6. Accessed 2020 Aug 10.
