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Correspondence

Whose voices inform online representations of HIV treatment as prevention?

Newman, Christy E.; Persson, Asha; Bains, Anthony; De Wit, John

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doi: 10.1097/QAD.0000000000000983
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Given the central role of the Internet as a source of information about health [1], it is important to understand how the changing field of HIV prevention is represented online, particularly since the advent of ‘game-changing’ [2] developments in the science of treatment as prevention. Using Google Search, the engine with the largest market share [3], our team collated search results on HIV prevention over a 2-year period to describe which countries and organizations feature in, and whose ‘voices’ inform, the most commonly retrieved results.

Keyword searches were conducted on five dates between May 2013 and May 2015 using three English-speaking Google Search domains (Australia, USA, UK) and four phrases: ‘HIV prevention’, ‘HIV treatment as prevention’, ‘HPTN052’, ‘PARTNER Study’; the latter two capturing results pertaining to trials which released ‘game-changing’ findings for the HIV response during this period [4,5]. Although related topics such as ‘preexposure prophylaxis’ were not included, content related to this and other areas of HIV prevention was consistently retrieved through those main phrases. The top ten results of each search were combined, duplicates excluded, and the number of original and unique results calculated (tabulated and original data available on request). Content was firstly coded by source outlet/agency, host nation, organizational type and purpose, and then analysed qualitatively to identify dominant ‘voices’ in each result (Table 1).

Table 1
Table 1:
Dominant voices and content that directly quote affected communities.

Of 540 total results, 135 were unique, with content drawn from 70 source outlets/agencies. Although we did not seek to evaluate the reliability of these sources, key organizations involved in leading the global and key national responses to HIV were noted, as were the most influential nongovernment organizations in this sector, and reputable outlets for the communication and governance of science. The vast majority (n = 121; 89%) were hosted by high-income, English-speaking nations, and organizational categories balanced across media, government, nongovernment, research and inter-governmental agencies. Although organizations could have a number of purposes, only 15 of the 70 were involved in directly conducting scientific research, and four were peer-reviewed scientific journals. Remaining content was hosted by organizations whose primary purpose was journalism (n = 11), consumer information (n = 28), or health promotion and/or advocacy (n = 12).

Analysis identified a dominant ‘voice’ in each result, conveyed through choice of genre and implied audience. An informational voice was most common, featuring in half of all content, and particularly in content reviewing treatment as prevention (and related topics) for a generalist audience through factsheets and short news pieces. This was followed by a scientific voice, featured in 29% of content, directly reporting the results of original research or debates through peer-reviewed journal articles, expert viewpoints or conference reports, assuming an expert audience able to understand scientific conventions. An instructional voice was employed in 16% of content, largely targeting health consumers with the implied aim of increasing awareness or changing behaviour through persuasion and instruction. The least common voice was journalistic, conveyed in only 5% of content, mostly long-form journalism, assuming an audience interested and able to engage with longer and deeper explorations of the clinical and social issues relating to treatment as prevention.

Community members were quoted either directly or by implication in 15% of content, but this does not mean the lived experiences of affected communities were evident in all of those results. On the contrary, direct quotes formed only a proportion of the content we coded as representing ‘community voices’, with some communicated implicitly (written by and for HIV-positive ‘peers’ by HIV community organizations, for example), or with negligible representative authenticity, in the form of fictionalized voices intended to represent an imagined affected community member, for example, ‘I have HIV, do I need to take medication?’

Despite our narrow aims and scope, and without speculating about potential effects on audiences, a number of observations can be made regarding our interest in whose voices inform online representations of HIV prevention, including treatment as prevention, today. Content was dominated by a small number of government, nongovernment, and media outlets from high-income countries. An informational voice dominated content, and the direct accounts of affected communities were very limited. Each of these observations point to the influence of a number of ‘boundary organizations’ [6] in translating developments in the science of HIV prevention for generalist audiences, and suggests that more rigorous community debate and dialogue largely happen elsewhere. Organizations with influence in the field of HIV prevention have both the potential and the obligation to more directly engage with and represent a broad range of community voices, including more in-depth accounts of the lived experiences of HIV prevention.

Acknowledgements

This research was partly funded by a small grant from UNSW Australia. Centre for Social Research in Health projects are partly or fully funded by the Australian Government Department of Health.

Conflicts of interest

There are no conflicts of interest.

References

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