Op-ed – Want success in HIV/AIDS research? Involve affected communities

By Jauhara Nanyondo

For a long time, African countries have been recipients of already developed products for consumption. For the HIV prevention and treatment, the trend needs to change.

A number of countries in Sub-Saharan Africa, Uganda inclusive, have been involved in research geared towards either finding the best treatment drug or another prevention option in addition to the existing ones such as condom use, elimination of mother to child transmission, post-exposure prophylaxis and pre-exposure prophylaxis.

The available treatment and prevention methods have proved futile in eliminating HIV in communities, therefore the search for the best option is still on.

Researchers acknowledge that they cannot work without the involvement of communities who are the main beneficiaries of the products that are they are working on. Prof. Pontiano Kaleebu, the Deputy Director Uganda Virus Research Institute and a senior HIV/AIDS researcher, recently said, “Scientists can’t work in isolation of communities. We need communities on board so that we are able to effectively evaluate the products at hand.”

Prof. Kaleebu’s statement brings to the fore an important aspect of stakeholder engagement in the effort to develop an acceptable, affordable and effective prevention option for HIV.

Stakeholder engagement is that process through which funders and implementers build transparent, collaborative and mutually beneficial relationships with interested or affected individuals, groups, organizations, or government bodies to carry out and shape research on HIV/AIDS collectively.

Constructive stakeholder engagement helps ensure the ethical and scientific quality of research as well as its relevance to communities. Community stakeholders have unique expertise to contribute to the research process because they possess important knowledge and understanding of the local HIV/AIDS epidemic, concerns of marginalised people and local priorities that the trial funders and implementers may lack.

This collaboration can ensure that the research questions and procedures are culturally sensitive and appropriate. It can also help avoid reinforcing existing inequalities and increase sensitivity to the needs of study populations.

Engagement also improves knowledge and understanding of the research processes, building research literacy and competencies. This in turn, helps stakeholders to contribute more effectively to the process of guiding the research and helps to address the power imbalance between the research team and the community stakeholders.

This eventually fosters trust and respect between trial funders, implementers and other stakeholders. Ultimately, ownership of research is ensured as well as the likelihood of successful research conduct, research completion and eventually the application of the results.

If the engagement is not done well as highlighted, all stakeholders may develop mistrust, loss of confidence and policy changes may not be realised. Therefore, as stakeholders in the fight against HIV/AIDS, we need to join hands with communities to fight new HIV infections and engage in inclusive research.

Ms Nanyondo is a HIV/AIDS researcher

nanyondoj [at] gmail [dot] com


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