My name is Ntando Yola, I work with the Desmond Tutu HIV Foundation, Cape Town as a social and community mobilizer and advocate in HIV, TB clinical trials. I started working in this field just over 12 years ago as a Community Liaison Officer of one of the IAVI HIV Vaccine trials in a small community outside Cape Town called Masiphumelele. This was after I quit my high school teaching job.
I am not conducting research as such but as my role as stated before provides support in the conduct of HIV vaccine and other HIV and TB prevention clinical trials by ensuring communities understand, are supportive and involved in clinical research. Involvement of communities is important because they are the most affected by HIV and any research. Development solutions that are being sought should involve them to not only ensure the success of clinical trials, but to facilitate an inclusive process. A strong relationship with the community will also help when taking positive trial results into real life settings to ensure seamless rollout of interventions and positive public health outcomes such as reduction of new HIV infections as would be provided by finding an HIV vaccine.
I believe the HIV vaccine research field recognizes the need to promote the involvement of communities and Good Participatory Practise (GPP 2011) in the research and development path. So, like many community engagement practitioners who are passionate about championing this area of work and show dedication in various methods and approaches of linking communities with science, I believe at some point this earned me the recognition which as you say got me to where I am. One of the areas that I believe were an additional turning point is an opportunity to be an AVAC Fellow that explored ways of broadening stakeholder engagement in trials beyond the research communities. This highlighted the importance of involving communities not only through the traditional community advisory board mechanism, but beyond to other stakeholders as mentioned in the GPP guidelines. This opens the scientific field to other role players like civil society entities in such a way that when there are breakthroughs in science they are well understood and hurdles of scaling up research outcomes into public health policy and implementation are minimized. Of course this is on top of ensuring the science is generally viewed in positive light, without suspicion and other unnecessary challenges in communities and roader community participation and support is well facilitated.
I’m motivated by humanity and this is a concept called “ubuntu’ in my country. It recognizes that whatever I am is because of other people and that makes me to aspire to achieve more for the general good of humanity. This is especially true in this exciting field of science where innovation is about finding solutions for a public health crisis hard hitting the communities and the world at the present moment. I think HIV is one of the health issues that not only shows the gaps in health systems across countries, but it also exposes a lot of socio-political inadequacies demonstrated by the inequity and lack of distribution of economic opportunities within countries and the world in general. Therefore the search for HIV solutions that force forward thinking about issues of access and general health programming serve as a catalyst to fight some areas of injustice in society.
I am really inspired by the dedication scientists show in this field. Their zeal, competitiveness and the spirit of “we shall search until an HIV vaccine is found” is refreshing and a lot that goes into making sure it is found are some of the various lessons that I learn whilst working in HIV vaccine research and development as well as in other biomedical HIV prevention interventions.
One from a community advocate, is to be sensitive to human participants and be considerate to their needs through the guiding principles of community engagement in all their PhD questions that are meant to bring solutions to humanity. However great a PhD adventure is, it can’t be without a voice of the people whose solution is intended for.
This section showcases early career and experienced scientists, advocates and other stakeholders, who will be telling their stories of how they ended up doing HIV research and what motivates them. If you would like to share your journey, please contact us at mailto:firstname.lastname@example.org.