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.

The U.S. encompasses a heterogenous mix of people and health disparities exist for various subpopulations, such as minorities, women, people with limited English proficiency, those with low socioeconomic status, and other underserved groups. Differences in health outcomes arise in part due to inequalities and injustices rooted in biological, social, and structural factors. Because the origins of health disparities are multifactorial, the approaches to reduce, or even eliminate them, must be multifactorial as well. The social and behavioral sciences are well poised to address the myriad and complex factors that affect health outcomes, including those at the individual level (eg, individuals’ behaviors, attitudes, and beliefs), the neighborhood level (eg, housing), the community level (eg, cultural values and norms), and the policy level (eg, public policies that influence healthcare funding and access to healthcare resources and educational materials). In addition, the social and behavioral sciences (1) help equip government agencies with the perspectives and tools needed to promote health equity and (2) contribute to rigorous, evidence-based solutions for public health issues, such as disparities found in childhood vaccination rates, childhood obesity, tobacco use, and access to health information technology. The FDA, in particular, actively conducts social and behavioral sciences research to guide the Agency’s efforts to advance and support health equity.

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UNSTRUCTURED Patient perspectives are central to the U.S. Food and Drug Administration’s benefit-risk decision-making process in the evaluation of medical products. Traditional channels of communication may not be comfortable for all patients and consumers. Social media websites have increasingly been recognized by researchers as a means to gain insights on patients’ views about treatment and diagnostic options, the healthcare system, and their experiences living with their conditions. Utilizing multiple patient perspective data sources offers the FDA the opportunity to capture diverse patient voices and experiences with chronic pain. The FDA Office of Minority Health and Health Equity (OMHHE) and the Center for Devices and Radiological Health (CDRH) worked with INSPIRE (Clinica Health, Inc.) to conduct a pilot study exploring posts from INSPIRE’s own patient platform and several social media platforms to gain insights into the key challenges and barriers faced by chronic pain patients (CPPs). The most common topics discussed among CPPs were disease burden, support and advocacy needs, and proper diagnosis. The two most frequently discussed treatments were opioids or narcotics, and devices such as transcutaneous electrical nerve stimulation (TENS) machines and spinal cord stimulators. Success in pain reduction was tempered by concerns of stigmatization regarding opioid addiction and dependency. The study illustrates how social listening data may provide valuable insights into diverse patient perspectives, preferences, and unmet needs, especially for conditions that may be perceived as stigmatizing.