Abstract
Over the last decade excellent progress has been made globally in HIV management thanks to antiretroviral therapy (ART) rollout and international guidelines now recommending immediate initiation of ART in all HIV-positive people. Despite this, advanced HIV disease (CD4 less than 200 cells/mL) and opportunistic infections remain a persistent challenge and contribute significantly to HIV-associated mortality, which equates to 23,000 deaths in Uganda in 2018 alone. Our Meningitis Research Team based in Uganda is committed to conducting clinical trials to answer important questions regarding diagnostics and management of HIV-associated opportunistic infections, including tuberculosis and cryptococcal meningitis. However, clinical research is impossible without research participants and results are meaningless unless they are translated into benefits for those affected by the disease. Therefore, we held a series of community engagement events with the aims of giving clinical research participants a voice in sharing their experiences of clinical research and messages of hope around advanced HIV disease with the community, dispelling myths and stigma around HIV, raising awareness about the complications of advanced HIV disease and local ongoing clinical research and recent scientific advances. The purpose of this Open Letter is to describe our community engagement experience in Uganda, which we hope will lay the foundation for further clinical research public engagement activities, giving research participants a greater voice to share their experiences.
Highlights
Over the last decade excellent progress has been made globally in HIV management thanks to antiretroviral therapy (ART) rollout and international guidelines recommending immediate initiation of antiretroviral treatment (ART) in people living with HIV
The ambitious UNAIDS “90-90-90” target states that, by 2020, 90% of people living with HIV (PLHIV) should be diagnosed, 90% of those diagnosed initiated on ART, and 90% of those on ART should be virally suppressed (HIV viral load
We addressed our aims by engaging a variety of audiences including healthcare workers through knowledge exchange sessions, and thereafter the community and stakeholders in the HIV field through community advisory board meetings, radio, television and two community events
Summary
Participants a voice to share their experiences of clinical research and messages of hope around advanced HIV disease with the community, 2) dispelling myths and stigma around HIV, and 3) raising awareness about the complications of advanced HIV disease and local clinical research and recent scientific advances. Purpose: Receive and collaborate The IDI Community Advisory Board (CAB; comprised of patient representatives, spiritual leaders, stakeholders and private sector) met with our study team on two occasions to discuss the aims and potential content of our proposed community outreach activities (Figure 4) Our aim within these meetings was to ‘receive’ opinions and suggestions from the CAB on our proposed outreach activities, and agree appropriate channels of information dissemination and adapting the content and language used to ensure cultural sensitivity Together, we agreed a schedule of events, including a circus event, a television and radio shows, and a ‘Journey of Hope’ event. Purpose: Transmit and collaborate ‘A Journey of Hope’ was a celebratory event bringing together clinical trial participants, the IDI Meningitis Research Team, key stakeholders including Centre for Disease Control, U.S Mission Uganda, Chair of the Mulago Hospital Institutional Review Board, an internationally renowned HIV patient advocate Dr Stephen Watiti, Executive Director of IDI and the research office. We hope to repeat this successful event in the future on the completion of further clinical trials
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