Background: Among racial and ethnic minority groups, the risk of HIV infection is an ongoing public health challenge. Pre-exposure prophylaxis (PrEP) is highly effective for preventing HIV when taken as prescribed. However, there is a need to understand the experiences, attitudes, and barriers of PrEP for racial and ethnic minority populations and sexual minority groups.Objective: This infodemiology study aimed to leverage big data and unsupervised machine learning to identify, characterize, and elucidate experiences and attitudes regarding perceived barriers associated with the uptake and adherence to PrEP therapy. This study also specifically examined shared experiences from racial or ethnic populations and sexual minority groups. Methods:The study used data mining approaches to collect posts from popular social media platforms such as Twitter, YouTube, Tumblr, Instagram, and Reddit. Posts were selected by filtering for keywords associated with PrEP, HIV, and approved PrEP therapies. We analyzed data using unsupervised machine learning, followed by manual annotation using a deductive coding approach to characterize PrEP and other HIV prevention-related themes discussed by users. Results:We collected 522,430 posts over a 60-day period, including 408,637 (78.22%) tweets, 13,768 (2.63%) YouTube comments, 8728 (1.67%) Tumblr posts, 88,177 (16.88%) Instagram posts, and 3120 (0.6%) Reddit posts. After applying unsupervised machine learning and content analysis, 785 posts were identified that specifically related to barriers to PrEP, and they were grouped into three major thematic domains: provider level (13/785, 1.7%), patient level (570/785, 72.6%), and community level (166/785, 21.1%). The main barriers identified in these categories included those associated with knowledge (lack of knowledge about PrEP), access issues (lack of insurance coverage, no prescription, and impact of COVID-19 pandemic), and adherence (subjective reasons for why users terminated PrEP or decided not to start PrEP, such as side effects, alternative HIV prevention measures, and social stigma). Among the 785 PrEP posts, we identified 320 (40.8%) posts where users self-identified as racial or ethnic minority or as a sexual minority group with their specific PrEP barriers and concerns.Conclusions: Both objective and subjective reasons were identified as barriers reported by social media users when initiating, accessing, and adhering to PrEP. Though ample evidence supports PrEP as an effective HIV prevention strategy, user-generated posts nevertheless provide insights into what barriers are preventing people from broader adoption of PrEP, including topics that are specific to 2 different groups of sexual minority groups and racial and ethnic minority populations. Results have the potential to inform future health promotion and regulatory science approaches that can reach these HIV and AIDS communities that may benefit from PrEP.

In 2019, the U.S. Food and Drug Administration (FDA) approved emtricitabine and tenofovir alafenamide (Descovy) as another option for HIV pre-exposure prophylaxis (PrEP) prevention for high-risk adults and adolescents. With the introduction of this new PrEP, millions of current users on emtricitabine and tenofovir disoproxil fumarate (Truvada), another PrEP medication currently used to prevent HIV transmission, have options of whether to continue their current treatment regime or transition to new treatment options. The objective of this study was to conduct a descriptive analysis to characterize user-generated social media conversations on Reddit associated with FDA-approved PrEP prevention treatment options. Key themes identified were associated with perceptions, knowledge, and attitudes associated with the transition of use of different PrEP medications. Data were collected retrospectively and prospectively from the Reddit platform for posts with keywords filtered for HIV, PrEP, and FDA-approved PrEP prevention treatment from October 2020 to December 2020. We chose the Reddit platform based on prior studies that have identified PrEP user conversations and insights on access challenges for specific AIDS communities, such as gays and men who have sex with men (MSM). Reddit posts were then manually annotated using an inductive content coding approach for key themes regarding the transition of use and other emergent themes from user-generated content. Formal coding of text data was conducted with refined codes, and sub-codes created. A total of 3,120 posts were analyzed from Reddit resulting in 315 posts that were coded for PrEP and 105 posts (33.33%) specific to user discussions regarding the transition of PrEP prevention. Overall, users expressed interest in drug switching to Descovy, particularly in the context of poorer adherence or concerns about existing side effects associated with Truvada. Other major themes included discussions about the cost of Descovy, apprehension about side effects in comparison to Truvada, insurance coverage changes, and discussions about the donation of Truvada to other users after transitioning. Among these discussions, topics related to sexual minorities, including MSM, reported concerns when considering a switch in their HIV prevention regime. Understanding the changing public perception associated with the introduction of new HIV prevention is important in the context of market access, patient safety, pharmacovigilance, and health equity, particularly among high-risk populations such as MSM. Results support the use of social media from a digital pharmacovigilance perspective to better understand emerging HIV prevention, treatment, and adherence challenges experienced by patients.

BACKGROUND Among racial and ethnic minority groups, the risk of HIV infection is an ongoing public health challenge. PrEP (pre-exposure prophylaxis) is highly effective for preventing HIV when taken as prescribed. However, there is a need to understand experiences, attitudes, and barriers of PrEP for racial and ethnic minority populations, and sexual minority groups. OBJECTIVE This infodemiology study aimed to leverage big data and unsupervised machine learning to identify, characterize, and elucidate on experiences and attitudes regarding perceived barriers associated with uptake and adherence to PrEP therapy. The study also specifically examined self-reported experiences from racial or ethnic populations and sexual minority users. METHODS The study used data mining approaches to collect posts from popular social media platforms Twitter, YouTube, Tumblr, Instagram, and Reddit. Posts were selected by filtering for keywords associated with PrEP, HIV, and approved PrEP therapies. We analyzed data using unsupervised machine learning followed by manual annotation using a deductive coding approach to characterize PrEP and other HIV prevention-related themes discussed by users. RESULTS We collected a total of 522,430 posts over a 60-day period, including 408,637 (78.22%) Tweets, 13,768 (2.63%) YouTube comments, 8,728 (1.67%) Tumblr posts, 88,177 (16.88%) Instagram posts, and 3,120 (0.60%) Reddit posts. After applying unsupervised machine learning and content analysis, a total of 785 posts were identified that specifically related to barriers to PrEP and were grouped into three major thematic domains including the: (a) provider level (n=13 posts, 1.66%); (b) patient-level (n=570, 72.61%), and (c) community level (n=166, 21.15%). The main barriers identified in these categories included those associated with knowledge (lack of knowledge about PrEP); access issues (lack of insurance coverage, no prescription, and impact of COVID-19 pandemic); and adherence (subjective reasons for why users terminated PrEP or decided not to start PrEP, including side effects, alternative HIV prevention measures, and social stigma). Among all PrEP posts, we identified 320 (40.76%) posts where users self-identified as racial or ethnic minority, or as a sexual minority population with their own specific PrEP barriers and concerns. CONCLUSIONS Both objective and subjective reasons were identified as barriers reported by social media users when initiating, accessing, and adhering to PrEP. Though ample evidence supports PrEP as an effective HIV prevention strategy, user-generated posts nevertheless provide insights into what barriers are preventing people from broader adoption of PrEP, including topics that are specific to two different groups of sexual minorities and racial and ethnic minority populations. Results have the potential to inform future health promotion and regulatory science approaches that can reach these HIV/AIDS communities who may benefit from PrEP.

This study seeks to identify and characterize key barriers associated with PrEP therapy as self-reported by users on social media platforms. We used data mining and unsupervised machine learning approaches to collect and analyze COVID-19 and PrEP-related posts from three social media platforms including Twitter, Reddit, and Instagram. Predominant themes detected by unsupervised machine learning and manual annotation included users expressing uncertainty about PrEP treatment adherence due to COVID-19, challenges related to accessibility of clinics, concerns about PrEP costs and insurance coverage, perceived lower HIV risk leading to lack of adherence, and misinformation about PrEP use for COVID-19 prevention. Supplementary Information The online version contains supplementary material available at 10.1007/s10461-022-03922-z.