Stellenbosch University
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Chance of a lifetime for dedicated community member
Author: Kim Cloete
Published: 24/07/2017

​For Tembaletu Nyandeni, travelling to Washington DC for the annual meeting of the HIV Prevention Trials Network (HPTN) was a dream come true.

It was the first time this young man from Khayelitsha, who is involved in a world-wide study on the prevention of HIV transmission, had been out of the country. It was also his first experience of a global conference.

“I was very excited. It was a huge thing for me and I'll never ever forget it. I learnt so much and loved being there," said Nyandeni, who is Deputy Chairperson of one of the Community Advisory Boards for the HPTN 071 (PopART) study implemented by the Desmond Tutu TB Centre (DTTC) at the Faculty of Medicine and Health Sciences, Stellenbosch University.

The Community Advisory Boards (CABs) form a crucial link between communities and researchers in the HPTN 071 (PopART) trial underway in 21 communities in South Africa and Zambia.

The HPTN's recent annual meeting brought together researchers from across the world who are involved in its clinical trials network to develop interventions to prevent HIV transmission.

Nyandeni made the most of the opportunity by participating in workshops and conference sessions and even had a foray into street theatre. He said meeting people from different cultures and backgrounds had been a highlight of his stay.

To top the experience, the DTTC as well as ZAMBART CRS in Lusaka won the Best Community Engagement Award at the 2017 HPTN Network Awards. These awards, which were presented at the HPTN meeting, recognise top-performers in community engagement, study participant accrual and retention and laboratory performance.

Nyandeni was there to celebrate the team's win and bring the award home.

Nozizwe Makola, who leads the Community Engagement team for the HPTN 071 (PopART) trial in South Africa, is committed to reaching deep and wide into the communities they work in and was thrilled about the award.

“I cried tears of joy and felt a great sense of fulfillment when our name was announced. It was thanks to a job well done by dedicated outreach teams, as well as the Community Advisory Boards."

The enthusiastic and hard-working Community Engagement team also published a paper in 2016, following a writing workshop facilitated by HPTN for Community Engagement groups in North Carolina in 2015.

Nyandeni was selected to attend the five-day conference due to his voluntary work as a CAB member and his commitment to the study.

CABs have been set up in all 21 communities that are involved in the HPTN 071 (PopART) study.

“I see myself as the key to the community. I give both the community and researchers feedback on issues and concerns. I am also able to relay to researchers what the community thinks and feels about the study each step of the way."

Nyandeni said his experience at the HPTN meeting had been a great confidence boost and had propelled him to strive towards his goals and study further.

He said he was impressed with the “wonderful food and friendliness of the American people", as well as travelling on a plane. He was particularly intrigued by the rapid transport subway system in Washington DC. “My father used to work in the mines. I got that same feeling of being in the mines when I was on the subway."

Makola said Nyandeni was able to share his experiences in the US with his fellow CAB members from other trials, so that they could gain a better understanding of the context of the trials.

“We have created trust and built relationships with stakeholders through the CABs, which have acted as a link between the researchers and the communities since the beginning of PopART. Without community engagement, a study of this magnitude would be difficult to conduct," said Makola.

The Community Engagement team works year-round in keeping communities interested and involved in the study. Community mobilisers go from street to street and door-to-door in the communities they work in, handing out pamphlets, talking to people and encouraging them to test for HIV. They also hold events, which include sharing updates about the study, singing, dancing and prize-giving, as well as HIV testing services.

“PopART is a big study undertaken in different sites with different challenges. We have learnt never to underestimate the role of community engagement during clinical trials," said Makola.

HPTN 071 (PopART) Population Effects of Antiretroviral Therapy to Reduce HIV Transmission is a research study that will determine the impact of a package of HIV prevention interventions on the incidence of HIV at a community level.

This includes conducting HIV counseling and testing at people's homes and linking HIV-infected clients to care at clinics.

Caption: Nozizwe Makola and Tembaletu Nyandeni.