Angelo Kaggwa-Katumba is a Program Manager at AVAC and Kay Marshall is a Senior Communications Advisor.
Scientists spend most of their time in laboratories or classrooms, in clinics or at conferences, in front of computers or wherever their field of specialty takes them.
The two of us have worked in the biomedical HV prevention field for more than three decades combined. Over the years, we’ve seen how so many scientists we know prefer to remain far from the spotlight—especially the media spotlight.
“They don’t get it,” one researcher said to us of journalists at a recent conference. “They always misrepresent my facts so I stay away from them,” we heard from another.
For their part, journalists have shared their own complaints about dealing with scientists as sources.
“Scientists speak in tongues to sound smart. Why would anyone say ‘end-user’ when she can simply say ‘someone who takes aspirin’?”
But journalists and scientists need each other if the public is going to understand the importance of research and support it. Opportunities are rare for them to meaningfully interact with each other.
To bridge the gap between scientists and the media, and to enhance knowledge and appreciation of each group’s role in biomedical HIV prevention and rollout, we, along with other AVAC team members, have conducted workshops for editors, scientists and civil society. We have convened media trainings in Eastern and Southern Africa and at major conferences; provided support to global communications experts; and over the past four years, initiated the media science cafés program in key countries in Eastern and Southern Africa. These provide a less formal space for interactions among journalists, scientists, civil society and research communities.
These programs are a crucial link.
At a symposium in April, organized by AVAC and Internews in Gaborone, Botswana, we were reminded that advocates are instrumental to making these connections and helping them to thrive.
At the Avani Hotel on the outskirts of Gaborone, about 30 people gathered in the intimate dining room reserved for private dinners. Most of them were health journalists from one of seven Southern African countries where biomedical HIV prevention research or implementation is underway. Journalists were from Botswana, Malawi, Mozambique, South Africa, Tanzania, Zambia and Zimbabwe. Seasoned journalists from Kenya and Uganda also joined to share their experiences and expertise in covering the field. Also in attendance were a couple of scientists and policy makers, and a handful of HIV prevention advocates representing civil society organizations from these same countries.
The journalists were there to learn about the research taking place in their own backyard and how it was connected to sister studies across the region. It was also an opportunity for the journalists to interact with the scientists conducting the research and gain the kind of knowledge they need to share this amazing science in language that is clear and compelling to their audiences at home.
We know that failure to make these connections represents a risk in itself. If you asked us, we can’t think of a time when there was more biomedical HIV prevention research in the region, or even globally, and each of these countries is deeply immersed in different aspects of it. More than 573,000 research participants in Africa (representing about 82 percent of the global total) are involved in research on HIV vaccines, microbicides, pre-exposure prophylaxis, HIV cure, HIV treatment, multipurpose prevention options, antibody-mediated prevention and hormonal contraceptives and HIV risk, among other areas. Far too often, local and national health journalists may not even know this research is underway, or their editors don’t grasp the significance of these stories in their communities. The public cannot support this work if it doesn’t know it exists. Even worse, poorly reported pieces may lead to fear and misjudgment, or, as we’ve seen in some places, stop important research from starting or continuing.
Educating journalists about the value of research through accessible, accurate stories, that inform and provide context, is vital.
A trip to Botswana Harvard Partnership is a case in point. Generally, access to the spaces where scientists work is restricted. In part, this is to protect the privacy of research participants. As part of the April symposium, researchers opened their doors to their world-class laboratory and clinical trial site. Some of the journalists had never visited a clinical-site laboratory, or any laboratory for that matter. Peering into a state-of-the-art industrial freezer holding 20,000 samples of material such as blood, urine, tissue, cells, DNA and protein among others, at minus 100 degrees, the journalists learned about the scientific questions under investigation from the researchers working with these samples. Some of these questions included: whether a combination of HIV prevention measures could significantly reduce the number of new HIV infections within a community; whether antibody infusions are safe and could prevent HIV infection; and what is the burden of hepatitis B infection among pregnant women.
They journalists learned how this work will inform other studies going on throughout the region.
“It now makes sense,” said Malawian Journalist, Chimwemwe Padatha.
“For me, seeing this makes the science more credible, more real,” added Botswana journalist Mmapula Molapong.
But those terms listed above—microbicide, pre-exposure prophylaxis and the like—they represent one of the challenges. It’s both essential and difficult to break down the jargon. Journalists who understand the science, and the context around it, report more and better stories, deepening public trust and interest.
Gathered around several dining tables pushed together, notebooks out, PowerPoint slides up on the screen, the journalists struggled to follow one scientist as she gamely made a first attempt at explaining the basics of research on broadly neutralizing antibodies. Looking at the faces around the table, some distracted, some frowning, most curious, an advocate from Botswana, Kennedy Mupeli said, “Can I help?”.
Mupeli had just completed his one-year AVAC Advocacy Fellowship and had also just been to the 2018 Conference on Retroviruses and Opportunistic Infections (CROI) in Boston in March, and steeped himself in this research.
“You or maybe your children have probably received fluids for dehydration via a syringe or IV, right? Now, imagine receiving the same IV but with fighter cells that protect your body from any sub-type of HIV.”
That’s the handy metaphor Mupeli used to make sense of a key prevention concept, which transformed a few frowns. The scientist nodded. She added a few details and continued to build off of Mupeli’s contribution, adopting less technical language modeled by Mupeli. The journalists leaned in to learn more. Later in the week, a whole session on the agenda was dedicated to the use and misuse of jargon, hence the birth of the most famous phrase at the symposium, “We love jargon, we hate jargon!”
Later in the session, a Zambian advocate, Chilufya Kasanda, showed how advocates hold a broad and deep level of knowledge about the context of research. She summarized the HIV prevention research ongoing in her home country. She could tell them the status of access to PrEP at trial sites in Zambia. She also explained the issue surrounding questions of standard of care at trial sites and why it’s generating debate among advocates and the research community right now.
Researchers tend to focus on their own studies. It’s not their job to maintain a bird’s-eye view on the whole landscape of HIV prevention. But the advocates know the science, they know the scientists, and they know the community.
The policy makers, scientists and journalists in the room took notice.
As the meeting concluded, Mupeli found himself surrounded by a group of journalists from Botswana. They wanted to start a coalition of health reporters, inspired by their counterparts in Kenya, Uganda and Zambia. Through the media science cafés, these journalists meet with advocates and scientists to network, get updates on research and implementation and spur each other on to better reporting. They share sources, learn new scientific concepts and talk craft.
Could Mupeli help them get this launched, they wanted to know. “I’m all yours,” said Mupeli.
We’ve since learned that the group, with Mupeli’s stewardship, had their second meeting early in June at the Botswana Harvard Partnership laboratory, a venue Mupeli secured through his links to them. A coalition has been formed and they are working on a plan to secure funding. Mupeli said, “But as we wait for the funds to come, we’ll do what we can with the resources we have: ourselves.”