Inclusion and Respect: Appreciating the Role People Living with HIV Have with Research Partners

The partnerships forged between people living with HIV and researchers have been an essential foundation upon which the response to the HIV epidemic has grown. The time has come to reaffirm and recommit to principles of inclusion and respect in the conduct of presenting research findings that impacts on our lives.

The early years of the HIV epidemic ushered in a radically different approach to traditional medical and clinical research. Academics and activists held a shared understanding that intimate and ongoing participation of people living with HIV in knowledge production was critical for designing effective responses. As the early activists challenged government inaction across numerous countries not only did the virus spread, people living with HIV knew they had to put themselves forward as the subjects in the research that was fundamental to finding a way to change the trajectory of the epidemic.

In response to the threat of HIV, our research colleagues embarked upon ground breaking medical, social, policy and community based research. It is fair to say that scores of researchers from numerous disciplines have often been on the front lines alongside people living with HIV as our champions, our advocates and our allies.

Many people living with HIV realise their relationship with health and community care services is a vital one, ensuring our ongoing health and wellbeing. However, we do not always consider how this extremely personal relationship is predicated upon the work countless researchers from myriad disciplines do in labs, universities and research centres around the world.

Similarly, though many researchers understand the centrality of people living with HIV to their work, others – to put it bluntly – do not appear to. The relationship that people living with HIV have with the research community today is exceedingly important, but it is based upon the sense of reciprocity.  People living with HIV repeatedly serve as volunteers to the research community, helping to ensure that new treatments, prevention technologies, programs and the hope for a vaccine or a cure can be realised.

For those who have lived with HIV for a number of years, their participation in research can be vast.  From participating in clinical trials, to filling in social and community based research surveys and questionnaires, as well as sometimes being the subjects of highly experiential, invasive and life altering medical research. People living with HIV continue put their lived experiences and their bodies into the hands of our research colleagues understanding that our continued contributions to HIV research can be an altruistic choice, a sense of social responsibility or perhaps rational self-interest or a willingness to affect change.

Regardless of what might drive someone living with HIV to participate or contribute towards various forms of HIV research, what is important is that they are valued and recognised actors in a partnership that stretches back to the earliest responses to HIV.

The best responses to the complexities of HIV have come to appreciate how the principles and practices of GIPA and MIPA (the greater involvement and meaningful engagement of people living with HIV) are essential towards ensuring that any response to HIV is grounded in the lived experiences of those living with HIV.  There is a need to ensure that all the players in the response to HIV review their practices and approaches to how they meaningfully engage people living with HIV and this includes our research partners.

It is for this reason that we are reminding our colleagues to consider the importance of recognising the ongoing participation of people living with HIV in their research.

A coalition of global organisations which represent affected communities, including people living with HIV, have produced a call to action for our research colleagues to consider what they can do to honour the lives of people living with HIV in their work and ensure that our legacy of working together to end HIV can be realised.

Take action

Click here to read more about the call to action to the global HIV research community

Click here to support the call to action to the global HIV research community

About the authors

Brent Allen is Senior Advisor, Policy and Programs at the International Council of AIDS Service Organizations

Laurel Sprague, PhD is the Executive Director of the Global Network of People Living with HIV

Suzy Malhotra is the acting Chief Executive Officer of Living Positive Victoria

Rebecca Matheson is the Global Director of the International Community of Women Living with HIV

clinical trial HIV partnership research study