Identifying Trusted Sources of Lyme Disease Prevention Information Among Internet Users Connected to Academic Public Health Resources: Internet-Based Survey Study

BACKGROUND: Misinformation about Lyme disease and other tick-transmitted pathogens circulates frequently on the internet and can compete with, or even overshadow, science-based guidance on tick-borne disease (TBD) prevention. OBJECTIVE: We surveyed internet users connected to academic tick-related resources to identify trusted sources of Lyme disease prevention information, explore confidence in tick bite prevention information, and examine associations of these responses with answers to commonly disputed issues. METHODS: The survey was conducted through social media and website pages for Western Connecticut State University Tickborne Disease Prevention Laboratory and the University of Rhode Island TickEncounter Resource Center. RESULTS: Respondents (N=1190) were predominantly female (903/1190, 76.3%), middle-aged (574/1182, 48.6%), and resided in New England states (663/1190, 55.7%). In total 984 of 1186 (83%) respondents identified conventional experts (eg, the Centers for Disease Control [CDC] or other government health agencies, physicians who follow Infectious Diseases Society of America guidelines for Lyme disease treatment guidelines, and academics) as trustworthy TBD prevention resources. However, nearly one-fourth of respondents would first consult personal contacts and web-based communities regarding prevention information before consulting conventional expert sources. The opinions of public health experts and physicians were rated among the top motivators underlying personal prevention decisions; yet, more than 50% of participants revealed distrustful attitudes toward, or were uncertain about, CDC-supported statements related to time to transmission of Lyme disease (708/1190, 59.5%), the safety of diethyltoluamide-based repellents for children (604/1183, 51.1%), and recommended use of antibiotic prophylaxis (773/1181, 65.4%). Multimodal regression models revealed that participants from high-Lyme-disease-incidence states were more likely to first seek TBD prevention information from personal networks and nontraditional sources before approaching conventional sources of TBD prevention information. We found that those reporting high rates of social media usage were more than twice as likely to first seek traditional expert sources of prevention information but were overall more likely to reject CDC-promoted Lyme disease information, in particular the established time to transmission of Lyme disease bacteria. Models also predicted that those participants who disagreed with the conventional scientific view on the antibiotic prophylaxis prevention statement were less likely to be confident in their ability to protect themselves from a tick bite. Overall, uncertainty in one’s ability to protect oneself against tick bites was strongly associated with uncertainty about beliefs in CDC-promoted TBD prevention information. Self-reported trust in experts and frequency of social media use suggest that these platforms may provide opportunities to engage directly with the public about TBD prevention practices. CONCLUSIONS: Using strategies to improve public trust and provide information where the public engages on social media may improve prevention communication and adoption of best practices.