Determined to beat back what they called a "tidal wave" of health misinformation and disinformation, a partnership of 50 organizations announced the formation of The Coalition for Trust in Health & Science at the AAAS Annual Meeting on March 2.
Mis- and disinformation in the United States during the COVID-19 pandemic led to preventable illness and deaths, and are "escalating already dangerously high levels of mistrust and distrust in health care, public health and science," said Reed Tuckson, one of the core conveners of the new coalition and co-founder of the Black Coalition Against Covid.
Members of the partnership want to use the Coalition's broad platform to raise a collective voice against health disinformation, and to share success stories and resources to combat health misinformation. The group has a two-year plan to develop resources and create a rapid response system with these goals in mind.
"There's always been misinformation, always, from the beginning of time … but these days, people who actually are in the business of generating good solid information need to stand up and be counted and know how to engage," said Mary Woolley, president and CEO of Research!America, during a media briefing held at the meeting.
An Amplified Voice
The Coalition includes basic and applied science organizations, health services researchers, pharmaceutical manufacturers, doctors, nurses and pharmacists, foundations and policy organizations, among others. AAAS is one of the Coalition founding partners and AAAS Chief Executive Officer Sudip Parikh serves on its convening committee.
"This collective collaboration has the potential to achieve the vision of evidence-based decision-making in healthcare far more effectively than individual action," said Parikh, who also serves as the executive publisher of the Science family of journals.
Although the group is still working out its rapid response strategies, speakers in the briefing said collective action will be a key part of the coalition's effectiveness. "So that when we see misinformation, we quickly combat it … not with one voice, or one organization, or one community group orone patient advocate, but all of us singing from the same sheet of music," said Julie Gerberding, the CEO of the Foundation for the National Institutes of Health. "That becomes even more important when dangerous disinformation is disseminated."
Health disinformation is often spread by well-organized networks, said Helen Burstin, CEO of the Council of Medical Specialty Societies. "I think some of us in the coalition and in the medical community think that we need to get equally organized if we're going to actually figure out how to attack what they're doing in these very deliberate, concerted disinformation efforts."
Sharing What Works
One of the immediate goals of the Coalition is to develop a compendium of activities and research for its members on how to best fight misinformation and disinformation — along with stories of strategies that didn't work.
The compendium can help define a set of principles and attributes of what trusted sources of health information are, "and really as importantly, how we make sure our patients have access to the trusted sources," said Burstin.
For instance, Burstin and her colleagues have been working with the National Academy of Medicine and the World Health Organization, funded by YouTube, to develop a set of principles that platforms like YouTube could use as a guide to elevate credible sources on its site, she said.
The Coalition also recognizes that health and science professionals "need to be a lot more nimble and a lot more diverse in terms of the way we reach out" to the public, especially people who have a historic mistrust of the health professions, said Shirley Malcom, senior advisor and director of the SEA Change initiative at AAAS, who moderated the briefing.
Building relationships within communities is key to sharing the best science, agreed Randall Rutta, CEO of National Health Council. More efforts need to be made to "structure our health care system and the way that information flows … between someone who has information to impart and someone who is going to benefit from that information," he said.
The Coalition has no immediate plans to advocate for legislation or regulations that impact how health misinformation or disinformation is shared on social media or other outlets, said Woolley.
But "we are past the point where we believe that the truth speaks for itself," she said. "Those days are over, if they really ever existed."