“Just Say Sex”

This post is second in a series on health reporting from the AIDS 2016, the International AIDS Conference in Durban, South Africa. Read the first and the final post.

“I’m advocating for a LiTUsA movement,”said Deborah Baron, public health and communications expert at the Wits Reproductive Health and HIV Institute, at a session on Communicating Complex Science at AIDS 2016, the International AIDS conference in Durban. “LiTUsA, as in Limit the Use of Acronyms,” she says with a smile.

Deborah was a co-author of the Communications Handbook for Clinical Trials which provides strategies, tips, and tools for scientists to convey their message and disseminate results.

For the first time, the Global Village at AIDS 2016 featured a Research Literacy Networking Zone, a space where advocates, community members, conference presenters and researchers and the media engaged to discuss the science and how to make it understood.

Baron says more and more, academic journals want a lay abstract of the science. “Amazingly, when scientists write the lay version, they experience the exhilaration of getting to the nub of the science and why their work matters in the lives of people.” That’s what journalists do too. In addition to the “Five Ws and an H” (who, what, when, where, why and how?), media stories should answer the question, so what? In other words, tell the story of why it all matters.

Baron’s top tip for HIV scientists at the conference is to start with the big picture. “Translate the research to resonate with what matters to people, for example ‘We want to help young women to stay safe.’” In the weeds of the scientific work there are usually all kinds of terms which can be absolutely horrifying to everyone who is not a scientist. “A participant placed on a trial may feel like they are being judged or they stand accused. But a when you say they are in study, it has a more neutral connotation.”

Also, to a scientist, terms like statistical significance and hazard ratio have a very specific meaning, but ordinary people would not know that unless it was explained.

A poster saying,
2016 International AIDS Conference. Credit: Ida Jooste/Internews

Kay Marshall, of AVAC, a global advocacy for HIV prevention group works to connect scientists, advocates and journalists, explains a big part of that connection is to develop a common language that is understood by the people for whom the science is meant. Respectful, clear language. “Take VISP and herd immunity, two terms in HIV research which scientists use and all they do is talking to themselves,” says Kay. VISP stands for Vaccine-Induced SeroPositive (test result) and what it refers to is that when you get an HV vaccine, you may test positive for HIV. This test result does not mean that you are HIV positive. It is an important concept which must be explained in simple terms to trial participants and the general public. Herd immunity is a term used when a large percentage of a population has become immune to an infection, which gives a measure of protection also to those who are not immune. But of course, human do not like to hear they are just part of a herd, says Kay. “It makes it sound like they are animals or mere subjects.”

And while scientists would say, “We need to terminate this participant,” they and journalists should think of better ways to communicate that the participant needs to exit the trial — for a health reason, for example.

Hendrik Huthoff, a lecturer at King’s College in London likes to find fun ways to tell the science story. He does this for “A Pint of Science,” an initiative which brings scientists to your local pub. “It’s a PowerPoint-free chat,” says Hendrik, “And the point is not to dumb it down, but to turn it around so that the meaning is clear.”

“Instead of toxicity, say side effects,” says Deborah Baron.

“Instead of vaginal intercourse, just say sex.”

Ida Jooste is Global Health Advisor at Internews.

(This story was originally posted on Medium.)