Most studies about HIV care are done in urban-based settings. Yet HIV continues to affect rural communities, where people are less likely to be asked to participate in trials, where infrastructure is scarce, and where stigma and distance create additional barriers. We must reinforce our commitment to equity in representation as a moral imperative and a scientific necessity.
When rural communities are left without the resources and support to participate in clinical trials our understanding of HIV is skewed. Interventions optimized for urban settings may underperform where the context is different. In a study applying best-worst scaling to identify the relative importance of perceived barriers by patients who are not consistently engaged in HIV care, the importance of transportation, social support and work/family responsibilities significantly differed across rural versus urban sites. (1)
Trial participation also represents access. In a 2020 commentary, we described how during the COVID-19 pandemic, many patients in urban centers benefitted from early access through trials (e.g., for remdesivir, monoclonals or vaccines), while rural patients were left out or gained access only much later. (2)
Key challenges in rural HIV research include participants’ related factors such as cultural sensitivity, geographic challenges (e.g., distance and cost of transportation), misperceptions about research and lack of opportunities to participate in research. Stigma and privacy concerns can also deter enrollment, especially for HIV or sexual health research. Many people travel farther to avoid being recognized at HIV clinics. Moreover, infrastructure, logistical and administrative burdens play a major role in limiting rural HIV research.
Because rural areas have fewer people with HIV than urban areas, single sites often cannot recruit enough participants, so often these sites are not considered in multicenter studies. They often lack trained research staff and the infrastructure to conduct research efficiently. Providers must juggle multiple responsibilities, leaving little bandwidth for research tasks. When included in multisite trials, rural sites often encounter inexperienced and reluctant local institutional review boards in addition to extended regulatory timelines.
A call to action: How can we support and improve rural HIV research?
The PILLAR study stands as one of the few trials that deliberately included both high-volume and low volume recruiting sites. (3) This approach explicitly recognized the value of rural and smaller site inclusion.
Rather than focus on recruitment efficiency alone, industry and academic sponsors should build in rural inclusion strategies: site mentorship, logistical support, flexible timelines and shared cores that reduce the burden on rural research sites. Embed rural inclusion in clinical trial design. Professional societies and academic journals should prioritize rural inclusion as a marker of research excellence. Researchers should share and publish data, even when numbers are small.
To address barriers facing research participants, we need to facilitate e-consenting, remote monitoring and decentralized trial elements that reduce participant travel burden. Adopt community-engaged models where local stakeholders help vet trial feasibility, align trials to local norms and negotiate design adaptations. Use locally rooted liaisons to bridge between investigators and communities. Recruitment must rely on trusted relationships with local providers, community organizations and peer networks, rather than broad advertising. Opening more trials is inadequate by itself. Community receptivity, organizational capacity and local infrastructure must be done in tandem.
HIVMA or another medical professional or research organization should also play a pivotal role in advancing rural HIV research by facilitating a national coalition of investigators working in rural and semirural settings. This coalition could maintain a searchable registry of HIV researchers (spanning early-career, mid-career and senior investigators) and sites, outlining their areas of expertise, patient demographics, research infrastructure and capacity to participate in multicenter or industry-sponsored studies. It could also catalog existing data-use agreements, IRB reliance structures and community partnerships so when new funding announcements or collaborative trials arise, teams can rapidly identify and engage ready partners. A longitudinal, pre-connected and transparent network could help transform fragmented rural research into a coordinated, equity-driven system capable of generating meaningful, generalizable evidence.
Finally, advocating for sustainable funding, science-based policies and equity will remain critical.
References
- Ramakrishnan A, Le Tourneau N, Dandachi D, et al. Applying Best-Worst Scaling Experiments to Identify Patient Preferences in Ending the HIV Epidemic Priority Regions. 17th Annual Conference on the Science of Dissemination and Implementation in Health. Arlington, VA, 2024.
- Dandachi D, Reece R, Wang EW, et al. Treating COVID-19 in Rural America. J Rural Health. 2021 Jan;37(1):205-206. doi: 10.1111/jrh.12457. Epub 2020 Sep 3. PMID: 32362035; PMCID: PMC7267414.
- Torres JA, Dandachi D, Holder H, et al. 1559. Healthcare Staff Perceptions of Feasibility and Acceptability on Implementing Injectable HIV Pre-exposure Prophylaxis into Standard of Care: Baseline Results from the PrEP Implementation Study for Cabotegravir Long Acting for Men in the Real World (PILLAR). Open Forum Infect Dis. 2023 Nov 27;10(Suppl 2):ofad500.1394. doi: 10.1093/ofid/ofad500.1394. PMCID: PMC10677973.