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. Author manuscript; available in PMC: 2024 Apr 4.
Published in final edited form as: J Assoc Nurses AIDS Care. 2022 Jan-Feb;33(1):e1–e5. doi: 10.1097/JNC.0000000000000298

The Impact of Misinformation and Health Literacy on HIV Prevention and Service Usage

Renee Garett 1, Sean D Young 2
PMCID: PMC10993296  NIHMSID: NIHMS1979157  PMID: 34939991

Abstract

There are an increasing number of online resources people can use to gain access to information, including for health-related issues, such as for HIV prevention. Trend data show that the way individuals obtain news and information has changed from years past. Health literacy, therefore, is an important skill to ensure adequate understanding of the data available about HIV in the media and online. Unfortunately, the proliferation of misinformation is ubiquitous and may have deleterious effects on individual health behavior, and consequently, the public’s health. This commentary focuses on sources of online misinformation as it relates to HIV and how misinformation impacts seeking health services.

Keywords: COVID-19, health seeking behaviors, HIV, pre-exposure prophylaxis, social media

The digital age has ushered in unprecedented access to massive amounts of information, bringing significant changes to the way the public consumes information, as well as challenges in response to these changes. According to the Pew Research Center, one consequence of the explosion of the digital era was the propagation and spread of misinformation, from COVID-19 to politics (Mitchell et al., 2020). The rise of social media in disseminating information has led to curated content that may not have the same journalistic standard as traditional media and therefore can spread inaccurate, false, malicious information, or propaganda. According to UNESCO (2018), misinformation is information that is misleading but not created with mal intent. This is altogether different than disinformation, which is false information created to purposefully create harm. Misinformation regarding COVID-19 was prevalent and appeared in various forms of media. The majority of misinformation about COVID-19 appeared on social media (88%), followed by television (9%), news outlets (8%), and other websites (7%) (Brennen et al., 2020). Often times, facts were misconstrued (59%) instead of fabricated (38%). Consequently, exposure to misinformation led to a reduced perception of needing additional information, which leads to information avoidance and heuristic processing and less systematic processing of COVID-19 information (Kim et al., 2020). Despite its ubiquity, only about 30% of Americans have expressed confidence in their ability to check the accuracy of information regarding COVID-19 (Gottfried, 2020). Misinformation regarding the United States presidential election was similarly widespread.

This commentary will focus on the impact of misinformation on the use of HIV services, including misinformation related to the safety, efficacy, and use of pre-exposure prophylaxis (PrEP); use of supplements; and HIV-related stigma. Those at risk for or living with HIV may be susceptible to misinformation for a variety of reasons. For instance, one study examined the perception of individuals living with HIV with limited income resources and history of substance use about their health seeking behavior online (Nokes et.al., 2018). Findings showed that study participants had low electronic health literacy and, though they were interested in seeking information online, low confidence in their ability to distinguish a credible source, with some preferring to speak with health providers instead.

Misinformation and stigma continue to marginalize vulnerable populations, which may lead to negative health outcomes. For example, among Black men who have sex with men, perceived stigma was expressed as a barrier to PrEP uptake, along with medical mistrust and concerns about medication side effects (Cahill et al., 2017). In 2018, 21% of all new HIV diagnosis were among youth, with 92% among young gay and bisexual men (Centers for Disease Control and Prevention, 2020). A survey of millennials and Generation Z found that stigma surrounding HIV impacted the emotional, mental, and sexual health among those living with HIV (Salman et al., 2016). Misinformation about treatment adherence was also high in this group with a third believing that medication can be ceased if they feel better.

Sources of Misinformation and Its Influence

News

The way society consumes news has drastically changed over the years. As stated by a Pew Research Center report (Stocking et al., 2020), 26% of Americans sought news on YouTube, where both traditional media outlets (i.e., news organization, CNN, Fox News) and independent channels (i.e., no clear affiliation) were viewed. Content analysis from the report showed that channels without clear affiliations covered conspiracy theories more frequently than media outlets. This becomes problematic as access to accurate information is paramount in all forms of decision making, including decision making related to health (Carrieri et al., 2019; Chen et al., 2018). This is especially the case in HIV where medications are available to prevent the transmission of the virus. Although some news outlets provided factual information that was vetted by an editor, there were times when the comments section contained misinformation from readers. For example, a post on a popular site reported on an experimental HIV vaccine study that contained quotes and information from credible sources such as the National Institute of Allergy and Infectious Diseases and Centers for Disease Control and Prevention (Furr, 2020). However, upon reading further in the comments section, several commenters espoused misinformation. The article had 209 comments and was shared on Facebook 797 times. Though efforts are made by writers and editors to present factual information in published articles, nevertheless, misinformation may spread due to comments on the article that may not have been subject to the same editorial review.

In addition to accessibility of information, recognizing and processing health information also play a role in health behavior, which is an essential component of health literacy (Institute of Medicine, 2004). Unfortunately, the capacity to distinguish accurate information about HIV from misinformation in the news is challenged by limited health literacy. The Pew Research Center (Mitchell et al., 2018) conducted a study about the ability of adults to distinguish between factual and opinion news statements correctly. Findings showed that approximately a quarter of American adults correctly classified factual statements as true (26%) or got most or all of the statements wrong (28%). Similar to the United States, misinformation about HIV and treatment persist in other countries, sometimes with news media and the government contributing to false statements and conspiracy theories, and a portion of the medical community supporting it (Ayres, 2020). In turn, this concerted effort has influenced those at risk in terms of seeking health care and getting screened due to fears of stigma and finding out the results of the test. Mainstream media have also been found to perpetuate stigma about PrEP, which in turn has affected PrEP uptake (Card et al., 2019). Table 1 shows sample text messaging about PrEP across online platforms, from online news media to social media. Aside from headline titles, page content and comments also contained misinformation (data not shown).

Table 1.

Sample Text of Posts About PrEP by Platform.

Platform Source Engagement Sample texta
News Newspunch.com, February 11, 2016 0 comments (Headline) Big Pharma Knowingly Gave HIV To Thousands Of Children
Website Americasfreedomfighters.com, n.d.b 0 comments
851 shares		 (Title) BREAKING: Chicago Hospital EXPERIMENTS On TEENS…Now They Have HIV Forever
Social Media Facebook, May 20, 2014 2 likes
5 comments		 Well you are a truvada whore but not in the sense this article implies. You’re “whoring” yourself to big pharma. You just want to create an environment where everyone is medicated and barebacking. It’s so transparent.
Twitter, February 7, 2019 1 like
1 comment		 PrEP promotes unsafe sex among people at risk. Men who take it are colloquially called “Truvada Whores;” bareback boys without an ounce of decency.
Reddit, March 25, 2016 6 comments Do you want drug resistant strains of HIV - one already exists, a man was infected while on Truvada - because that’s how you get them.
Open in a new tab
a

Quotes from individuals have been modified to protect individuals from being identified by or linked to this report.

b

n.d.=no date

Impact of Misinformation from Websites

In addition to news media outlets, misinformation also persists on other websites and can affect HIV-related attitudes and behaviors. Research has indicated that individuals who sought medical information online were apt to change their medical decision (Chen et al., 2018; Yigzaw et al., 2020), and that the credibility of the source of information influenced medical decision making (Chen et al., 2018). For instance, people living with HIV who took supplements had significantly greater use of the internet to seek health and medical information compared to those who did not take supplements, and they also were more likely to believe and trust information about HIV cures that was unfounded (Kalichman et al., 2012). For those with low electronic health literacy, the wherewithal or confidence to differentiate between factual and erroneous messaging may be challenging, resulting in negative health behaviors and outcomes.

Social Media

Health literacy, whether online or off, plays a key role in distinguishing misinformation, especially when false information can spread quickly or go viral. For instance, one study examined young adults exposed to YouTube videos with misinformation about the health effects of tobacco products and found that the videos led to a more positive attitude about the featured tobacco products (Albarracin et al., 2018). Additionally, consequences of health misinformation obtained on social media can have an impact on health seeking behavior, information knowledge, self-management, and relationships with health care providers (Smaldone et al., 2020). Concerns about health misinformation obtained on social media may negatively impact communication and relationships with health professionals, information knowledge, self-management, and participation/health engagement. The power of social media and its influencers on health, can have a massive influence on people’s attitudes and behaviors, including HIV-related behaviors (Young, 2012; Young et al., 2020). A study examining “fake news” found that 40% of the most shared links contained false health information, which was shared more than 450,000 times (Waszak et al., 2018). Facebook advertisements of lawsuits against manufacturers of PrEP claimed that drugs, such as Truvada, caused serious side effects. Despite pleas from LBGTQ advocacy groups that the advertisements presented false medical information and created harm by perpetuating misleading information, Facebook did not remove the advertisements, citing the advertisements did not violate their policy (Romm, 2019). Consequently, these advertisements resulted in a decreased likelihood that those at risk would start PrEP or continue taking PrEP, as well as created doubt about the overall safety of PrEP (Grov et al., 2021). A sexual health charity had a similar experience when they informed Facebook of advertisements promoting herbs that can cure HIV (Rodger, 2020). They requested the platform delete the advertisements due to their potentially harmful effects. Facebook deleted the advertisement from the charity’s page but left the advertisements visible on other pages that were frequented by those affected by HIV. Misinformation about HIV on social media stems from misleading advertisements to opinions by users who publish posts and comments. For example, , similar to other platforms, conversations about health topics on Twitter are influenced by current world events that can result in positive, negative, and misinformed tweets (Cai et al., 2020). Efforts to curtail HIV misinformation on social media (Young, 2012) may be implemented which may have potential to mitigate its pervasiveness.

Impact of COVID-19 on Internet Health Information Seeking

The COVID-19 pandemic has impacted daily life in unprecedented ways, including related to HIV services (Young & Schneider, 2020). In-person information seeking through health practitioners has been thwarted due to the pandemic because of less frequent clinic visits for HIV services. Health care consumers who are using virtual visits more and plan on continuing to use them are more likely to share data during a crisis compared to before the pandemic, and also plan to use digital tools to track their health (Betts et al., 2020). Not only are more people relying on others beyond the medical profession for their health information, the information they receive may not be accurate or may be completely false. The pandemic will likely have a long-standing effect on the increased use of online HIV and health services, thus making it important for clinicians, researchers, and policymakers to quickly navigate and identify the large amounts of health misinformation online.

Conclusion

The spread of misinformation can have dire consequence for individuals at risk for HIV or living with HIV. As a precaution, individuals in search of health information online should take several steps to evaluate the credibility of health information websites. It is equally imperative that health advocates reach out to the public in meaningful ways on digital platforms to provide credible information. Additionally, social media platforms need to monitor their content to minimize misinformation that can pose great harm to public health and safety. Similar to the misinformation posted about COVID-19, social media companies need to tackle inaccurate and false information about HIV. Policymakers also have a role in mitigating the spread of misinformation through actions that would fund educational programs and campaigns to increase health literacy, minimize stigma, and combat harmful myths about HIV, as well as passing legislation to educate online behavior, and minimize misinformation and disinformation.

Key Considerations.

  • Misinformation may impact attitudes about HIV prevention and treatment which may influence health behaviors that can potentially affect clinical outcomes

  • Clinicians should address health literacy during visits to counter HIV misinformation patients may encounter online

  • HIV social media public health campaigns should address misinformation and offer guidance on recognizing credible sources of health information

Acknowledgments

This publication was supported by the National Institutes of Mental health of the National Institutes of Health under Award Number RO1MH106415, National Institute of Allergy and Infectious Diseases (NIAID), National Institute on Drug Abuse (NIDA), and National Center for Complementary and Integrative Health (NCCIH). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We wish to thank Romina Romero for her assistance on previous versions of this manuscript.

Footnotes

Disclosures

The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.

Contributor Information

Renee Garett, ElevateU, Irvine California, USA..

Sean D. Young, Associate Professor, Department of Emergency Medicine, and Executive Director, University of California Institute for Prediction Technology, Department of Informatics, University of California, Irvine, California, USA..

References

  1. Albarracin D, Romer D, Jones C, Jamieson KH, & Jamieson P (2018). Misleading Claims About Tobacco Products in YouTube Videos: Experimental Effects of Misinformation on Unhealthy Attitudes. Journal of Medical Internet Research, 20(6), e229. 10.2196/jmir.9959 [DOI] [PMC free article] [PubMed] [Google Scholar]
  2. Ayres S (2020, March 12). HIV conspiracy theories and the virus continue to thrive in Russia. Los Angeles Times. https://www.latimes.com/world-nation/story/2020-03-12/disinformation-and-conspiracy-theories-keep-russias-hiv-inf [Google Scholar]
  3. Betts D, Korenda L, & Giuliani S (2020). Key trends in agency, virtual health, remote monitoring, and data-sharing. Deloitte. https://www2.deloitte.com/us/en/insights/industry/health-care/consumer-health-trends.html [Google Scholar]
  4. Brennen JS, Simon FM, Howard PN, & Nielsen RK (2020). Types, Sources, and Claims of COVID-19 Misinformation (p. 13). https://reutersinstitute.politics.ox.ac.uk/types-sources-and-claims-covid-19-misinformation
  5. Cahill S, Taylor SW, Elsesser SA, Mena L, Hickson D, & Mayer KH (2017). Stigma, medical mistrust, and perceived racism may affect PrEP awareness and uptake in black compared to white gay and bisexual men in Jackson, Mississippi and Boston, Massachusetts. AIDS Care, 29(11), 1351–1358. 10.1080/09540121.2017.1300633 [DOI] [PMC free article] [PubMed] [Google Scholar]
  6. Cai M, Shah N, Li J, Chen W-H, Cuomo RE, Obradovich N, & Mackey TK (2020). Identification and characterization of tweets related to the 2015 Indiana HIV outbreak: A retrospective infoveillance study. PLOS ONE, 15(8), e0235150. 10.1371/journal.pone.0235150 [DOI] [PMC free article] [PubMed] [Google Scholar]
  7. Card KG, Hawkins BW, Mortazavi L, Gregory A, Ng KH, & Lachowsky NJ (2019). Stigma, the Media, and Pre-exposure Prophylaxis for HIV Prevention: Observations for Enhancing Knowledge Translation and Resisting Stigma in the Canadian Context. AIDS and Behavior, 23(7), 1877–1887. 10.1007/s10461-018-2332-x [DOI] [PubMed] [Google Scholar]
  8. Carrieri V, Madio L, & Principe F (2019). Vaccine hesitancy and (fake) news: Quasi-experimental evidence from Italy. Health Economics, 28(11), 1377–1382. 10.1002/hec.3937 [DOI] [PMC free article] [PubMed] [Google Scholar]
  9. Centers for Disease Control and Prevention. (2020, May 18). HIV and Youth. https://www.cdc.gov/hiv/group/age/youth/index.html
  10. Chen Y-Y, Li C-M, Liang J-C, & Tsai C-C (2018). Health Information Obtained From the Internet and Changes in Medical Decision Making: Questionnaire Development and Cross-Sectional Survey. Journal of Medical Internet Research, 20(2), e47. 10.2196/jmir.9370 [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Furr A (2020, February 3). Experimental HIV Vaccine Deemed “Ineffective” in Stopping Virus. Breitbart. https://www.breitbart.com/health/2020/02/03/experimental-hiv-vaccine-deemed-ineffective-stopping-virus/ [Google Scholar]
  12. Gottfried J (2020, May 28). Around three-in-ten Americans are very confident they could fact-check news about COVID-19. Pew Research Center. https://www.pewresearch.org/fact-tank/2020/05/28/around-three-in-ten-americans-are-very-confident-they-could-fact-check-news-about-covid-19/ [Google Scholar]
  13. Grov C, Westmoreland DA, D’Angelo AB, Johnson J, Nash D, Daskalakis DC, & the Together 5000 team. (2021). Marketing of Tenofovir Disoproxil Fumarate (TDF) Lawsuits and Social Media Misinformation Campaigns’ Impact on PrEP Uptake Among Gender and Sexual Minority Individuals. AIDS and Behavior, 25(5), 1396–1404. 10.1007/s10461-020-02977-0 [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Institute of Medicine. (2004). Health Literacy: A Prescription to End Confusion. 10.17226/10883 [DOI] [Google Scholar]
  15. Kalichman SC, Cherry C, White D, Jones M, Kalichman MO, Detorio MA, Caliendo AM, & Schinazi RF (2012). Use of dietary supplements among people living with HIV/AIDS is associated with vulnerability to medical misinformation on the internet. AIDS Research and Therapy, 9(1), 1. 10.1186/1742-6405-9-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
  16. Kim HK, Ahn J, Atkinson L, & Kahlor LA (2020). Effects of COVID-19 Misinformation on Information Seeking, Avoidance, and Processing: A Multicountry Comparative Study. Science Communication, 42(5), 586–615. 10.1177/1075547020959670 [DOI] [PMC free article] [PubMed] [Google Scholar]
  17. Mitchell A, Gottfried J, Barthel M, & Sumida N (2018). Distinguishing Between Factual and Opinion Statements in the News. Pew Research Center. https://www.journalism.org/2018/06/18/distinguishing-between-factual-and-opinion-statements-in-the-news/ [Google Scholar]
  18. Mitchell A, Jurkowitz M, Oliphant JB, & Shearer E (2020). Americans Who Mainly Get Their News on Social Media Are Less Engaged, Less Knowledgeable. Pew Research Center. https://www.journalism.org/2020/07/30/americans-who-mainly-get-their-news-on-social-media-are-less-engaged-less-knowledgeable/ [Google Scholar]
  19. Rodger H (2020, August 20). Facebook blasted by CEO over ads claiming to cure HIV with herbs. The Herald. https://www.heraldscotland.com/news/18664715.facebook-blasted-ceo-ads-claiming-cure-hiv-herbs/ [Google Scholar]
  20. Romm T (2019, December 9). Facebook ads push misinformation about HIV prevention drugs, LGBT activists say, ‘harming public health.’ Washington Post. https://www.washingtonpost.com/technology/2019/12/09/facebook-ads-are-pushing-misinformation-about-hiv-prevention-drugs-lgbt-activists-say-harming-public-health/ [Google Scholar]
  21. Salman A, Nguyen C, Lee Y-H, & Cooksey-James T (2016). A Review of Barriers to Minorities’ Participation in Cancer Clinical Trials: Implications for Future Cancer Research. Journal of Immigrant and Minority Health, 18(2), 447–453. 10.1007/s10903-015-0198-9 [DOI] [PubMed] [Google Scholar]
  22. Smaldone F, Ippolito A, & Ruberto M (2020). The shadows know me: Exploring the dark side of social media in the healthcare field. European Management Journal, 38(1), 19–32. 10.1016/j.emj.2019.12.001 [DOI] [Google Scholar]
  23. Stocking G, Kessel P. van, Barthel M, Matsa KE, & Khuzam M (2020). Many Americans Get News on YouTube, Where News Organizations and Independent Producers Thrive Side by Side. Pew Research Center. https://www.journalism.org/2020/09/28/many-americans-get-news-on-youtube-where-news-organizations-and-independent-producers-thrive-side-by-side/ [Google Scholar]
  24. UNESCO. (2018). Journalism, “Fake News” and Disinformation: A Handbook for Journalism Education and Training. https://en.unesco.org/fightfakenews
  25. Waszak PM, Kasprzycka-Waszak W, & Kubanek A (2018). The spread of medical fake news in social media—The pilot quantitative study. Health Policy and Technology, 7(2), 115–118. 10.1016/j.hlpt.2018.03.002 [DOI] [Google Scholar]
  26. Yigzaw KY, Wynn R, Marco-Ruiz L, Budrionis A, Oyeyemi SO, Fagerlund AJ, & Bellika JG (2020). The Association Between Health Information Seeking on the Internet and Physician Visits (The Seventh Tromsø Study - Part 4): Population-Based Questionnaire Study. Journal of Medical Internet Research, 22(3), e13120. 10.2196/13120 [DOI] [PMC free article] [PubMed] [Google Scholar]
  27. Young SD (2012). Recommended Guidelines on Using Social Networking Technologies for HIV Prevention Research. AIDS and Behavior, 16(7), 1743. 10.1007/s10461-012-0251-9 [DOI] [PMC free article] [PubMed] [Google Scholar]
  28. Young SD, Lee S-J, Perez H, Gill N, Gelberg L, & Heinzerling K (2020). Social media as an emerging tool for reducing prescription opioid misuse risk factors. Heliyon, 6(3), e03471. 10.1016/j.heliyon.2020.e03471 [DOI] [PMC free article] [PubMed] [Google Scholar]
  29. Young SD, & Schneider J (2020). Clinical Care, Research, and Telehealth Services in the Era of Social Distancing to Mitigate COVID-19. AIDS and Behavior, 1–3. 10.1007/s10461-020-02924-z [DOI] [PMC free article] [PubMed] [Google Scholar]

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