HHS, surgeon general want to hear about your health misinformation research, experiences

To clamp down on misinformation during the next major public health crisis, the Department of Health and Human Services (HHS) and U.S. Surgeon General Vivek Murthy, M.D., are asking the public to share any research, data or personal stories related to COVID-19 health misinformation.

According to a notice announcing the request for information (RFI), the department will be storing and publishing the submissions in the federal register for future research.

HHS said it hopes to see submissions from misinformation researchers, healthcare workers and the general public alike, writing in the announcement that “no dataset is too big and no story is too small” for inclusion and review.

“Health misinformation—health information that is false, inaccurate, or misleading according to the best available evidence at the time—has been a challenge during public health emergencies before, including persistent rumors about HIV/AIDS that have undermined efforts to reduce infection rates in the U.S. and during the Ebola epidemic. But the speed, scale and sophistication with which misinformation has been spread during the COVID-19 pandemic has been unprecedented,” HHS wrote in a soon-to-be-published version of the RFI.

“This RFI seeks to understand both the impact of health misinformation during the COVID-19 pandemic and the unique role that technology and social media platforms play in the dissemination of critical health information during a public health emergency. The inputs from stakeholders will help inform future pandemic response in the context of an evolving digital information environment.”

HHS will be accepting submissions until May 2, 2022, according to the unpublished RFI.

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Health misinformation has become a primary focus for the surgeon general, who last year released a community toolkit and other advisory resources on the subject for providers, educators and other community leaders.

While the spread of misinformation has had immediate effects on the pandemic response—such as reduced vaccine uptake, care avoidance and the use of treatments that are not indicated for COVID-19—healthcare groups have warned of a lasting mistrust that could harm patient-provider relationships for years to come.

American Medical Association President Gerald Harmon, M.D., gave public remarks last week warning that such distrust has contributed to violence against along with burnout among healthcare workers.

“We applaud the effort announced by [Murthy] to collect data from tech companies and personal experiences about misinformation,” Harmon said in a late Thursday statement. “Collecting and understanding this data is critical to reversing its deadly impact and future spread.”

Tech companies running the platforms through which health misinformation has been disseminated have taken plenty of heat from government and healthcare leaders who say more could be done to remove misinformation and block those who spread it.

Although platforms like YouTube and Facebook say they’ve removed millions of pieces of debunked content through the pandemic, tech leaders have pointed to more proactive strategies such as medical organization partnerships and redirects to trusted content as a more effective approach than misinformation "whack-a-mole."