Brent Allan
INSPIRING a new generation of community-minded HIV researchers
A new project seeks to put the principles of community involvement in research into action. The INSPIRE project has been funded through the Melbourne HIV Cure Consortium in Melbourne, Australia.
International best practice, and the United Nations, endorse the principles of Greater Involvement of People with HIV and AIDS (GIPA). GIPA emphasises the ethical and practical importance of community and stakeholder involvement in HIV clinical research. Brent Allan, Senior Advisor at ICASO, says
This project extends the recent call to the global HIV research community to acknowledge the centrality and vitality of people living with HIV in our fight against the virus.
Our collective efforts are better if we work together. The voices, experiences and bodies of people living with HIV have been the foundations upon which we have built good policy, best practices in community and clinical care, as well as the testing ground for treatments and research.
Building partnerships to collaboratively deliver community education about HIV cure research honours the commitment to GIPA. It also breaks through the silos that often limit effective partnerships.
This initiative takes this work one step further.
Introducing the new project: INSPIRE
The INSPIRE project: Improve, Nurture and Strengthen education, collaboration, and communication between PLHIV and REsearchers aims to improve communication in HIV cure clinical studies. This will mean identifying effective strategies for involving affected communities at all stages of a study, from design to dissemination. It will also mean educating researchers about the benefits of, and strategies for, involving affected communities in scientific research. It is a unique collaboration of researchers and community advocates. Participants in the project include people from social science, clinical practice, community education and activism as well as global policy and global advocacy agencies.
Dr Karine Dubé, from the University of North Carolina, and a partner on this project, reflected on the need for meaningful dialogues across disciplines
This type of initiative is timely because we need to redress power balances between communities and researchers. The HIV cure research field needs to establish best practices for community engagement, and the tools generated will have broad applicability for many different settings.
The project aims to advance best practice for community engagement in HIV cure research. This will involve identifying strategies for community engagement through all stages of a clinical study. The project will also improve communication between basic scientists, people living with HIV and community activists in Victoria, Australia. This model for community engagement can then be adapted for other settings.
What the project involves
The project will run two exercises. The first is a simulation workshop exercise. Teams of researchers and community members will collaborate to identify areas for community engagement on a mock research design proposal. The workshop will move beyond community engagement discussions. It will also identify barriers to engagement for both researchers and community members. Participants will design strategies to overcome these barriers at all stages of the research process.
Dr Jillian Lau, from the Department of Infectious Diseases at the Alfred Hospital says
I am really excited to be part of this project. Sharing expertise and experiences among people living with HIV, social scientists, community advocates, clinicians and researchers is important.
From a clinician/researcher point of view I would hope to gain insights into the experience of trial participants. I want to better understand issues around enrolment into HIV cure research, barriers to involvement, and expectations of trial conduct. This will help us design better clinical trials to answer important scientific questions towards a cure for HIV.
The second project activity will capitalise on the pop-up science classes which ICASO trialled at AIDS 2018 in Amsterdam. A team of two instructors will use information from the simulation workshop to identify barriers to engagement in research. This will include perspectives of researchers and community members. They will design strategies to overcome these barriers at all stages of the research process. The strategies will form the basis for a pop-up class.
Looking to the future
Jennifer Power from the Australian Research Centre in Sex, Health and Society at La Trobe University, who will lead the project says
We feel confident that this project will improve communication in HIV cure clinical studies. We will identify effective strategies for involving communities in research at all stages of a study, from design to dissemination. Additionally, we will educate researchers of the benefits of, and strategies for, involving communities in scientific research.
The search for a cure for HIV needs to be a partnership. People living with HIV, people treating HIV and researchers running HIV cure trials all have a stake. The new project will build on existing practice and INSPIRE this partnership approach.
See here to read more about the call to encourage acknowledgement of people living with HIV in research.
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