The theme of World AIDS Day on 1 December 2023 was ‘Let communities lead’. This was a very welcome theme because it acknowledged that programmes for HIV prevention and initiatives for HIV treatment and care have been driven by those communities that have been impacted the most. Health providers need to listen and engage with local and national communities to ensure that interventions are appropriately targeted. To allow communities to lead, it is essential that they are part of the discussions.
In its simplest form, ‘community’ has been defined as involving geographical nearness, similarities in characteristics and the sharing of attitudes and interests towards a particular topic. However, this can be seen as too simplistic in its approach because wider communities have micro-communities that exist within them.
Over two decades ago, MacQueen and colleagues explored what community was and how to define participation in public health with relation to HIV vaccine trials (MacQueen et al, 2001). Unsurprisingly, they found that community meant different things to different people, but core elements included joint action, locus, sharing, social ties and diversity as being important. Twenty-one years later, Harting and colleagues undertook a critical review, exploring participation in health promotion activities, finding that it can be transformative and empowering for marginalised communities and confirming that many of the core elements from 20 years prior still exist (Harting et al 2022).
There are many ways in which communities can be engaged with public health developments. Needs assessment is a good starting point. Engaging individuals to identify the needs of a community is essential. Health professionals undertaking new initiatives must ensure that those affected by the initiatives are able to be involved. Community members are the people who understand what is happening and what may be required. Time needs to be spent at this stage to ensure effective planning is considered and that the community affected is able to mobilise others to hear the messages and participate. If this is not achieved, then some members of the targeted community may be left behind.
HIV testing rates increased by 10% between the end of 2021 and the end of 2022, which is very positive but there is still work to be done as this fell short of pre-COVID rates in 2019. Communities looked to work with health services by encouraging HIV tests. HIV testing was highest among gay, bisexual and other men who have sex with men (GBMSM) and lowest among heterosexuals, particularly women. However, there were a micro-community of GBMSM who did not see an increase in HIV testing and this in turn led to an increase in new HIV diagnoses. These are GBMSM from South Asian communities. Effective participatory public health needs to ensure that no one is excluded from actions and activities.
Successes have already been seen among GBMSM by their community encouraging engagement with testing, prevention, treatment and remaining in care. Those successes now need to be translated to the micro-community and mobilise South Asian GBMSM to lead on an increase in testing and a reduction in new diagnoses. This can be achieved by ‘letting communities lead’.