Patient involvement in the design and delivery of healthcare is crucial in delivering better outcomes for People Living with HIV/AIDS (PLHIV). Online engagement for People Living with HIV is one way that this is possible.
According to the GIPA principles, ratified by 42 countries in 1994, PLHIV involvement in health outcomes is an essential component of the ethical and effective response to HIV in all countries. Innovative education and engagement strategies help ensure these principles are put into practice globally.
Involvement in this context refers to the PLHIV community’s active participation in decision-making beyond a basic advisory or consultative role. In program delivery, this means that PLHIV are active collaborators in developing policy or campaigns – contributing to strategic directions on the basis of their knowledge and experience of their community.
Ensuring PLHIV are involved in the decisions affecting their care, is often difficult. Many organisations lack the knowledge or networks needed to engage and involve PLHIV in a meaningful way and fall back on inconsequential one-off consultations or advisory boards.
Additionally, not all PLHIV are well-equipped to participate. They may lack the skills, language capacity or confidence to be involved in formal activities or initiatives. This is particularly the case for more vulnerable groups such as Indigenous people, migrants and, in some cases, injecting drug users or sex workers.
Education and information is important. Better documentation and public promotion of more effective and creative approaches to community engagement will help educate professionals across the sector and improve service and program outcomes.
This is particularly important in the context of the contemporary HIV landscape where biomedical advances and policy shifts have led to rapid change in approaches to HIV prevention and treatment. Alongside this, antiretroviral treatment (ART) has become central to HIV prevention – with national and international strategies now including targets for the number of PLHIV taking ART.
PLHIV, the wider community, health services, policy-makers, and researchers are all having to adapt and change in tandem with an environment in flux. Given this, it is perhaps more important than ever to ensure PLHIV are actively participating in all HIV policy development and program delivery. Not only is this ethically important, but GIPA allows for policy and programs to be more responsive and identify unintended consequences and even opportunities – there is a better flow of information from PLHIV, to organisations, to medicine and to government (and back again) if PLHIV are actively involved.
In cases where organisations are working with marginalised and stigmatised groups, such as injecting drug users, gay men, sex workers or migrant communities affected by HIV, the involvement of PLHIV means the sector will have better access to ‘on the ground’ information about the needs of these communities.
In today’s world, this flow of information also often occurs in an online environment. There are a number of community-driven social networking initiatives and online communities that allow for two-way communication between PLHIV and the formal HIV service sector.
‘The Institute of Many’ (TIM), for example, is an Australian project, created for and by PLHIV. TIM began as a Facebook group and has developed into a website and important advocacy network. The people who run TIM are highly engaged and connected with PLHIV across Australia. The formal HIV service sector routinely seeks the involvement of ‘TIM’ organisers and members in service and program delivery, and organisational direction-setting.
In this way, the online environment also provides an accessible medium through which a broad range of PLHIV can contribute to discussions about the HIV response.
A further point to consider is the value-add that comes from engaging GIPA principles. Beyond being a human rights issue, there is evidence that active involvement of PLHIV in HIV-related programs, service delivery or research improves outcomes.
The What Works and Why (W3) project at La Trobe University, is a research study that aims to demonstrate and enhance the critical role that PLHIV community and peer-led organisations play across the HIV sector and within their communities. The W3 project has shown that if funders, policy-makers, and researchers are not drawing on and gaining strategic benefit and insight from the participation of PLHIV and peer leadership, then the partnership as a whole is not maximising its own investments.
This finding is consistent with other international research, which has shown that active involvement of PLHIV in program delivery increases the credibility of the organisation, ensures programs are well targeted, increases community access to a program and helps to ensure sustainability of funding and resources.
What is clear is that the active involvement of PLHIV in the initiatives aimed for their treatment and care enhances program outcomes. GIPA, as a principle, is not tokenistic or only an ethical consideration. Rather it is fundamental to the effective delivery of programs, services and research related to HIV.
Dr Jennifer Power is a Research Fellow at the Australian Research Centre in Sex, Health and Society at La Trobe University.
Dr Graham Brown is a Senior Research Fellow the Australian Research Centre in Sex, Health and Society at La Trobe University.