More communication needed for HIV trials:study

The fight against HIV requires human vaccine trials in at-risk communities, but researchers aren't doing enough to gain the trust of potential participants, a new study suggests.

In a paper published in the American Journal of Public Health, University of Toronto researchers argue people in high-risk communities have misconceptions about vaccine trials that make them wary about participating.

The study stems from interviews with nine focus groups in high-risk communities in Toronto and Ottawa after a major international HIV trial was cancelled before completion in 2009.

"We found that there is a general altruism towards HIV vaccine trials in these communities, and a feeling that people should participate 'for the greater good,'" said lead author Peter A. Newman, professor at U of T's Factor-Inwentash Faculty of Social Work.

"But there is also a lot of overriding confusion and misunderstanding, which illustrates a clear need for medical researchers and health professionals to do a better job of communicating with at-risk communities before, during and after trials."

For example, many people believe HIV vaccine trials involve injecting a small amount of HIV into the bloodstream, but this isn't true.

The researchers also recorded a distrust for doctors and medical researchers. This was reinforced by the cancellation of the 2009 trial after researchers learned some participants would be put at a higher risk of contracting HIV.

Many people in the focus groups said they believe the researchers knew about the risks ahead of time but didn't tell the participants.

"In order to find a vaccine for HIV, it's essential to have the participation of those in at-risk communities for vaccine trials," said Newman. "Our study showed that we're not doing enough to adequately communicate the processes and outcomes of HIV vaccine trials to most at-risk populations. There is still a lot of misinformation, distrust and misunderstanding out there, which could ultimately lead to people in high-risk communities refusing to participate in trials."