History
Community Expert Solutions originates from the work done as a part of the 2BeatHIV project. On December 14, 2015, 2BeatHIV launched as a research project funded by an R01 NIH NIAID grant (PIs Tucker/Rennie) and housed at UNC Chapel Hill. Dr. Allison Mathews founded the 2BeatHIV project after initial consultation from multiple community members, local businesses, and community-based organizations in Durham, NC. 2BeatHIV used crowdsourcing to identify and develop community-sourced ideas to improve community engagement for HIV cure research. As a result, 2BeatHIV initiated the development of several community engagement projects, including a campaign about HIV cure research, a campaign to reduce stigma associated with HIV testing, stakeholder video interviews about the challenges and opportunities for HIV cure research, and a series of HIV cure capacity building workshops with community-based organizations.
HIV CURE RESEARCH DAY
Marginalized communities have the collective power to help shape how medical innovation and research impact their health-care access and treatment and how they choose to heal their communities. On December 14, 2015, Dr. Allison Mathews launched the 2BeatHIV research project funded by an R01 NIH NIAID grant (PIs Tucker/Rennie) and housed at UNC Chapel Hill. The 2BeatHIV project used crowdsourcing to identify and develop community-sourced ideas to improve community engagement for HIV cure research. As a result, 2BeatHIV initiated the development of several community engagement projects, including a campaign about HIV cure research, a campaign to reduce stigma associated with HIV testing, stakeholder video interviews about the challenges and opportunities for HIV cure research, and a series of HIV cure capacity building workshops with community-based organizations. In 2016, Dr. Allison Mathews and Kimberly Knight co-founded HIV Cure Research Day (December 14) in the state of North Carolina to promote collective ownership over finding a cure for HIV and ending the epidemic. The original slogan for the day, “Own the Cure,” highlights the power that collective advocacy can have in shaping how a medical cure is developed and distributed to those most marginalized and affected by the epidemic. This idea is a powerful tool toward eradicating health disparities in access and treatment across multiple disciplines and fields of study. HIV Cure Research Day was officially proclaimed by the Durham County Board of Commissioners on December 14, 2016, and from 2017-2019 was proclaimed by Roy Cooper, Governor of North Carolina. In 2018, Governor Cooper and the Office of Public Engagement invited Dr. Mathews to host the inaugural World AIDS Day in the Executive Mansion in collaboration with the Office of the First Lady of North Carolina, the NC Department of Health and Human Services, and the UNC Institute for Global Health and Infectious Disease. The goal of the event was to start the conversation about ways we could leverage the resources available in North Carolina to address the HIV/AIDS epidemic. Dr. Mathews delivered a talk at TEDxCaryWomen entitled, “Fight HIV Stigma through Access, Mobilization, and Equity,” which chronicles the inspiration for the founding and the impact of HIV Cure Research Day in the state of North Carolina.
While an HIV cure is the ultimate goal, it is important to also address access and equity issues, so that marginalized communities no longer have to struggle to receive adequate and equal access to health care. Historically, marginalized groups have been exploited in research studies and rarely benefited from medical innovations, due to disparate education and access. This history has created mistrust of clinical scientists within the affected groups. The current research structure expects participants to voluntarily contribute their data to scientific studies without any expectation of benefit or ownership over the medical advancements developed from the studies. This structure leaves participants from marginalized communities disadvantaged. They are bearing the risk of research participation but often are not benefiting from therapeutic discoveries because of their marginalized status in society and limited access to healthcare. HIV Cure Research Day seeks bold strategies to empower community members to transform the way that scientists, government entities, and businesses engage with low-income and marginalized people about research and healthcare access. The day celebrates the life of Timothy Ray Brown, the first man cured of HIV; highlights advancements in HIV cure science; and facilitates community involvement in identifying novel ways to end the epidemic through research, technology, policy and social justice.
To date, HIV Cure Research Day and the activities of the 2BeatHIV project have hosted more than 25 community events with over 1000 attendees and 75 community partners; generated 450 crowdsourced ideas; helped create 6 new companies; reached 450,000 people online; won several state and national awards; and has been recognized by the NIH and international scholars. In 2021, the Gilead COMPASS Faith Coordinating Center at Wake Forest University adopted responsibility for planning HIV Cure Research Day and leading efforts to promote activities for 14 Days of HIV Awareness from World AIDS Day (December 1) to HIV Cure Research Day (December 14).
DIGITAL LINCS
From 2017 to 2021, the Community Expert Solutions team worked to develop the Digital LinCS platform to make it easier and faster for HIV patients to apply and reapply to patient medication assistance programs. The platform was designed to make it less costly for case managers and clinics to meet the needs of their clients, thus allowing the health systems to help more people or reduce costs.
We were awarded several accolades and funding for this project, including participation in Innovate Durham, NC IDEA’s Micro Seed Grant Program, CED’s Venture Mentoring Service, and SESH Global’s innovation mentoring program. We were also finalists for Arlan Hamilton’s Backstage Capital Accelerator, The Come Up Accelerator with HUSTLE Winston-Salem, and the Met Life Digital Accelerator powered by Techstars.