As information-sharing has become decentralized in our digital age, are traditional approaches to science communication selling research short? An editorial from Dr. Julie Robillard, published today in Movement Disorders, suggests that new challenges in communicating research discoveries are an opportunity for researchers to take greater initiative in sharing their work with the public, especially online.
“The prevalence of low-quality information about science and health can be harmful to those who may not know the difference between a reliable source and a predatory one,” says Dr. Robillard, who studies how people share and use online information about diseases like Alzheimer’s and Parkinson’s. “We need to adapt how we communicate about science to account for the fact that people get most of their information online, in bite-sized pieces. Now that anyone can publish anything on the Internet, we need scientists to step up and be more active in their own knowledge translation to counter all the misinformation out there.”
The shift from top-down knowledge dissemination to a more collaborative online environment can be seen as an opportunity to make health research more accessible and relevant – 91 per cent of physicians report having seen patients who have sought specific health information online. And while the information patients seek online can spur important conversations with their physicians, there is also a risk that low-quality and misleading information may harm patients.
One risk to patients is that it can be hard to discern quality health information from marketing in some cases. A study about websites containing information about a popular herbal supplement found that 25 per cent of those sites contained recommendations that, if followed, would cause real physical harms.
“Beyond headlines, we’ve found that when research is oversimplified, the result is that the benefits of emerging treatments and technologies tend to be exaggerated, with the risks downplayed or not mentioned,” says Dr. Robillard. “In addition, the language of research discovery is easily co-opted, making competing platforms can seem legitimate, even as many of them are commerce-driven. It’s well known at this point that people are seeking health information online; as a result, the line between information and advertisement is increasingly blurred.”
In addition to risks to people seeking information, there are other, less direct risks to researchers in this climate of miscommunication.
“When research is overly hyped or simplified to the point where all nuance and context are lost, what we’re doing is diluting our expertise,” says Dr. Robillard. “We lose authority over our subject matter in the eyes of the public, and that can lead to a loss of trust in science and research. We become just another voice in an argument for sides, rather than experts in our fields.”
Dr. Robillard recognizes that this onus on researchers to communicate their own work can seem like an additional pressure, especially in a “publish or perish” environment, and one where research funding is increasingly precarious. The Royal Society, while on the one hand recognizing the urgency of communicating science to the public, found through survey data that a large percentage of researchers attach stigma to knowledge translation activities, and view researchers who pursue media and engagement opportunities as less serious about their work.
In short, scientists are under a lot of pressure and they are learning to adapt to new modes of communication. However, the innovative ways in which we share and consume information presents real opportunities for interactivity and exchange. Greater access to high quality information for patients can mean better decision-making about their own health. Clinicians and other healthcare professionals may be able to fill in the gaps for patients, improving the public’s understanding of health research and providing tools on how to interpret scientific information and think critically about the way it is reported.
“Mass media is increasingly democratized,” says Dr. Robillard. “There are challenges there, certainly, but this is also a great time to broaden the scope of who gets to participate in research. As the media landscape changes, the way we interact with media and patient communities should change too. Now is the time to figure out how to bring these diverse groups together to promote a more inclusive approach to health research.”