Unheard Voices
Unheard Voices is a partnership between One Voice Network, and National AIDS Trust, the UK’s HIV rights charity. The project aims to end structural inequalities by ensuring Black communities living with or at risk of HIV can hold decision-makers to account, influence actions, and become part of the decision-making process. We want to see a health and support system which offers equitable standards of care for Black communities and ensures they do not experience disproportionate impact of HIV or HIV related stigma and discrimination.
What the project is trying to achieve?
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Gaining a better understanding of what sexual health and HIV service coproduction looks like now and what it can look like within local authority
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Creating more opportunities for Black communities to contribute to research and service design
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Develop a skills training course to empower black community members to engage with and contribute
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Improving the understanding of primary care providers on the experiences of Black People living with HIV who access primary care so primary care providers can reflect on what they can do differently
Our objectives
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Black people living with HIV would be reflected in research (both in advisory groups and trials) on various aspects of HIV (PrEP, mental health, treatment adherence) with meaningful acknowledgement of how their experience with HIV is different
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Local authorities acknowledging and utilising the expertise of Black people living with HIV and involving Black communities in every step of the service design, tender and provision
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Primary care providers understanding the needs of Black people living with HIV and accommodating them as far as possible to improve health outcomes
We are changing things by:
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Establishing and training a research panel of Black community members to review research
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Working with local authorities on how they can integrate Black people’s lived experience in every step of the HIV service design process, from ideas to implementation
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Creating new connections between local and national decisionmakers and Black-led health community organisations
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Briefing healthcare providers on the experiences of Black people living with HIV who have accessed primary care
Statistics:
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In 2021, 56% of Black Africans living with HIV were diagnosed late, making them the group with the highest rate of late diagnosis – late diagnosis meaning they were found to be positive at the point where the HIV already started to actively damage the immune system.
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In 2019, 45% of new diagnosis were Black, Asian and Ethnic Minority with 26% of new diagnosis being of Black African ethnicity
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Over 1/3 of Black People living with HIV who responded to OVN’s community survey felt dissatisfied with their GP experience.
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In the same survey, Black people with HIV reported the areas where their health needs were the most unmet were counselling (32.4%) stress management (33.8%) weight management (40.9%) lifestyle management (39.4%) drug services (43.5%) and family planning (43.5%).