The Meaningful Involvement of People with HIV in Research

Positive people have a long history of involvement in research. Indeed, we wouldn’t be where we are today without the positive people that came before us, who participated in research even though they were sick, even though they often knew that research would not benefit them personally. Because of them, we are in a position where the end of HIV transmissions is a possibility, and I can’t think of a better example of the power of involving communities in research about them, than our research into HIV.

What seems obvious to us today is that people with HIV have directly experienced the factors that make individuals and communities vulnerable to HIV infection. They have first- hand experience of HIV, of HIV stigma, of HIV related illnesses, of the reasons why the HIV prevention message doesn’t always work, and they’ve developed strategies for managing these things.

So now it almost goes without saying that our involvement as equal partners in programme development and implementation has improved research outcomes, and indeed, improved our response.

They have first- hand experience of HIV, of HIV stigma, of HIV related illnesses, of the reasons why the HIV prevention message doesn’t always work, and they’ve developed strategies for managing these things.

But it wasn’t always this way. There was a time when scientists, researchers and doctors consulting with non-clinical people on the process of a clinical trial, for example, was seen as hugely radical.

This idea, of involving people with HIV in the response, is a concept that dates back to foundational documents like the Denver Principles and the Ottawa Charter. It’s modern incarnation is MIPA – the meaningful involvement of people with HIV.

These documents can be summarised as calling for four things:

  1. A recognition of the important contribution that people with HIV make to the HIV
  2. A space to be created for that
  3. That positive people are supported to fill that space by building their capacity so they can fully participate.
  4. And the creation of HIV-supportive political legal and social

But it wasn’t always this way. There was a time when scientists, researchers and doctors consulting with non-clinical people on the process of a clinical trial, for example, was seen as hugely radical.

In a research context, what this requires is involving positive people at the earliest opportunity and sharing power and control of the study with them – all the way through – to the finish.

By working with communities, to set the research agenda we ensure that what is researched is relevant, and so has the greatest chance of success.

By involving the community in the design and implementation of research projects we ensure that research is safe and respectful of their needs. We also maximise the potential for positive involvement.

And by involving people with HIV in the interpretation of research findings we help ensure that data is not misunderstood in ways that obscure the truth and stigmatise HIV.

There remain a number of areas that we are yet to fully understand where the knowledge of people with HIV will be crucial to our success if we are to end HIV in Australia

In a research context, what this requires is involving positive people at the earliest opportunity and sharing power and control of the study with them – all the way through – to the finish.

Firstly, adhering to treatments over an entire life with HIV is not just something that ‘happens’. It’s a struggle. It’s a daily challenge. It’s a thing that positive people have worked incredibly hard to achieve. There’s an enormous amount of work behind that 95% indicator that says merely ‘more people with HIV are taking treatments’. By bringing an understanding of this mountain of invisible work that positive people do every day to keep Australia’s HIV response on track – we will reinforce our response, reinforce our communities and take us all closer to our common goal.

Secondly, the perspective of the HIV positive community is vital to understanding what the end of HIV actually looks like. There is a risk that once we hit the elimination target we think we’ve won, that the job is done and we can all go home. But ‘virtual elimination’ is in-fact just the start of the long-end of HIV in Australia. Once transmissions are eliminated we have 30, or 40 years of work to do.

To maintain community viral suppression for all of that time we must understand how to maintain good quality of life for people with HIV in a world where we may only have only 91 transmissions or less per year, nationally. And the community that has the knowledge we need is, again, the positive community.

Lastly, in a pandemic where patterns of new transmissions are changing – the perspectives of migrant communities, of young people, of women and of Aboriginal people will be vital.

So we must embed MIPA deeply within the fabric of HIV related research. Engagement with affected communities must happen automatically at the earliest opportunity. We must increase the opportunity for people with HIV to influence the setting of the research agenda, to help plan and implement research design and to interpret research.

And we must preserve, at all costs, our world-leading and uniquely Australian partnership approach in which the four pillars of government, research, clinical and community come together as equal partners in the response, all with their specific role to play.

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