The Critical Role of HIV Research: A Call for Community Engagement
Hands forming a heart shape against a vibrant red background, with red ribbons - symbolic of HIV/AIDS awareness - intertwined around the fingers. The image shows brown-skinned hands making the universal gesture of love and support.
Projects like our current HIV informational study help us put the Social in The Social Question. We are passionate about working on market research studies that can make a real difference in everyday lives, in this case, the reliable information and resources related to HIV management. Being part of the data story allows us to develop both information and products that best serve needed markets and audiences.
Now, literally more than ever, where we’re in times of change and uncertainty, the importance of robust, community-driven HIV research and reliable healthcare information becomes more crucial than ever. As the current administration shifts in federal policy and funding create new challenges for accessing HIV-related resources, the role of healthcare providers, community health centers, and research participants becomes increasingly vital in maintaining progress against HIV/AIDS.
We tapped into our Content Connections research methodology and teamed up with Kalob Gossett, an HIV educator and advocate, to learn more about where HCPs go for reliable information. Kalob hosted a poll and question via IG Stories for his HCP followers to answer.
The Importance of Reliable Information Sources
One of the reasons we partnered with Kalob on this assignment is because of his commitment to the cause, especially with our present day healthcare limitations and concerns: "Having trusted HIV information is essential to ensure we continue making progress to end HIV/AIDS and help the communities who are disproportionately affected by it. Otherwise, this will lead to many new infections and likely deaths."
While many HCPs in Kalob's community cited government websites such as the CDC, when those go dark, we need new sources to keep HIV patients (and those at risk!) properly informed. ICYMI: The Trump Administration has been scrubbing government websites and halting medical funding, including research and content related to HIV.
Community health centers have long served as beacons of hope and reliable information for those affected by HIV/AIDS. As Kalob notes, these centers "have supported those who needed it through even the darkest times of this epidemic," and their role remains crucial in providing accurate, up-to-date information and care.
Beyond community health centers, healthcare providers have identified several reliable, non-government affiliated resources for HIV information and support:
AIDS Education and Training Centers (AETC) and regional networks
UpToDate clinical resources and databases
Professional organizations like the American Academy of HIV Medicine (AAHIVM)
Local AIDS service organizations (such as Western North Carolina AIDS Project)
Peer-reviewed medical journals and journal clubs
Healthcare provider networks and community forums
Hospital-based educational resources and information sheets
Professional medical meetings and continuing education programs
HIV educational materials from pharmaceutical research organizations
Social media resources curated by LGBTQIA+ healthcare providers
Community outreach materials and educational pamphlets
These diverse resources provide essential information while remaining independent of changing governmental policies. The combination of clinical expertise, community knowledge, and peer support creates a robust network of reliable information sources for both healthcare providers and patients.
Why Research Participation Matters Now More Than Ever
The continued progress in HIV treatment and prevention relies heavily on ongoing research and community participation. Here's why your involvement matters:
For Healthcare Providers:
- Your participation helps identify best practices in patient care and support
- Research data informs treatment guidelines and protocols
- Your experiences help shape more effective intervention strategies
- Participation helps bridge gaps in care for marginalized communities
For Patients:
- Access to cutting-edge treatments and care options
- Opportunity to contribute to advancing HIV medicine
- Voice in shaping future treatment approaches
- Connection to supportive healthcare communities
The Role of Community Health Centers
Community health centers have consistently demonstrated their commitment to:
- Providing culturally competent care
- Serving marginalized populations
- Maintaining accurate, up-to-date information
- Supporting both patients and healthcare providers
- Advancing research through community engagement
A Call to Action - Research is Needed
We’re actively inviting HCPs in Canada, the UK, and the US to join our privately paid study related to HIV informational resources for marginalized patients, including patients with or at risk for HIV. You can learn more and sign up here. Our current study focuses on understanding and improving healthcare access and information resources for both providers and patients. Your participation can help shape the future of HIV care and support services.
Other Ways to Advocate
Beyond participating in our research, there are many powerful ways to support HIV advocacy and education:
Connect with Digital Advocacy Communities
Follow HIV advocates and educators on social media:
Join online support groups and forums for healthcare providers and patients
Subscribe to HIV-focused newsletters from community health organizations
Participate in virtual awareness campaigns and educational webinars
Engage with Local Organizations
Volunteer at community health centers
Support local AIDS service organizations
Participate in HIV awareness events and fundraisers
Join local LGBTQIA+ health advocacy groups
Attend community advisory board meetings at your local HIV clinic
Professional Development and Education
Join professional organizations focused on HIV care
Participate in HIV-focused continuing education programs
Attend conferences and workshops on HIV treatment and prevention
Mentor other healthcare providers interested in HIV care
Share resources and best practices with colleagues
Community Support and Education
Organize educational sessions in your healthcare facility
Create or distribute educational materials in multiple languages
Partner with local LGBTQIA+ organizations
Support peer education programs
Advocate for comprehensive sex education in your community
Policy and Systemic Change
Support community health centers through donations or volunteer work
Join healthcare provider advocacy networks
Participate in letter-writing campaigns to local representatives
Support initiatives for affordable HIV medication access
Advocate for inclusive healthcare policies in your institution
Together, we can ensure that accurate, reliable HIV information and care remain accessible to all who need it, regardless of external challenges. Every action, whether big or small, contributes to supporting our community and advancing HIV care.
