Patient Lyme disease websites prioritize science; public health websites prioritize consistent messaging—Comment on ‘Lyme disease prevention: A content analysis of Canadian patient group and government websites’
A recent article ‘Lyme disease prevention: A content analysis of Canadian patient group and government websites’ by Journault et al. (2020) in Zoonoses and Public Health describes content analysis of three public health and three patient group Lyme disease websites with respect to information on prevention of infection. The (relatively few) divergent items of information noted between the public health and patient groups were then classified as correct or incorrect by consultation with two anonymous and non-independent individuals identified as ‘academic researchers and employees of government agencies’ and described as Lyme disease experts but with no description of their expertise, qualifications or research interests.
The findings presented showed homogeneity between the public health websites and divergence on some points between the public health and patient websites; the divergent points on the patient websites were deemed incorrect supporting a general narrative of patient websites as anti-science. While this kind of analysis is interesting and potentially useful, the evidence, critically evaluated, would indicate the opposite. The study misses the very important point that the discrepancies were primarily due to the patient websites, with many more scientific references than the public health websites (Figure 1), updated content rapidly in response to research findings (Figure 2). The public health websites largely duplicated each other’s content (Journault et al. 2020; Figure 2b) with less evidence of input from primary scientific literature (Figures 1 and 2). Thus, the patient websites reference and reflect scientific research much more extensively than the three surveyed Canadian public health websites.
By assessing divergent material, both archived and current versions, in relation to both the scientific literature and an international public health website rather than anonymous expert opinion, very
different conclusions are obtained about the reliability of information provided by patient advocate versus public health websites. Re-assessing the source and validity of the information shows that
public health websites reference many fewer research studies that than the patient websites (Figure 1). For example, CanLyme, the website of the Canadian Lyme Disease Foundation, which is the National Lyme disease patient organization in Canada, lists over 500 scientific articles. The other patient websites list 47 and 4. In contrast, the national public health website references 4 scientific articles while the provincial websites referenced 0 (although Public Health Ontario now references 6; Figure 1b). Consistent with this observation, the public health websites show less agreement with scientific literature than the patient websites (Figure 2a). Similar findings have been noted by Irving and Galway (2019) in a website content analysis. These authors found that 31% of Ontario public health websites
contained incorrect or misleading information relative to the literature or national and international public health websites.
The time taken to reflect new research findings can be assessed by comparing the websites to an international public health website such as the Center for Disease Control and Prevention (CDC).
In comparison to this website, the National Canadian public health website, the Canadian Public Health Agency (PHAC), at the time of the initial analysis, was the most closely aligned. The national patient website was the least aligned. The other websites, those of the provincial public health bodies and provincial patient websites, were markedly similar (Figure 2b). Importantly, following the CDC’s website updates regarding transmission (listed as divergent and incorrect information in the article), the patient websites are now better aligned with the CDC website than government websites (Figure 2c).
This analysis speaks to greater responsiveness to scientific findings by the patient groups and argues against the narrative presented in the Journault et al. (2020) publication of patient group websites presenting unreliable information. The fact that this finding was not presented presumably
arises from the unusual and problematic study design used in the Journault et al. (2020) publication. Using anonymous ‘experts’ associated with government (Box 1) instead of assessing divergent information by recourse to peer-reviewed literature or, at least, a well-regarded international public health website, leads to perpetuation of informational bias (eminence versus evidence). This approach lacks transparency and reproducibility, and was further compounded by indications of author bias; the content of the tables and text present in the article does not always reflect the information in the websites assessed and multiple examples of inconsistent treatment of government and patient
websites are present (Box 1). While there is an element of subjectivity in categorizing material, it is nevertheless necessary …
In response to this paper