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What should we do about medical misinformation?
It goes without saying that everyone who calls themselves an expert on “misinformation” is NOT a topical expert in scientific communication, nor does applying misinfo monitoring tools increase trust with those in need of help.
It goes without saying that everyone who calls themselves an expert on “misinformation” is NOT a topical expert in scientific communication, nor does applying misinfo monitoring tools increase trust with those in need of help.
Methods devised over the last few years to spot disinformation are now expanding to track online health conversations. Tech companies, university centers, to nonprofits and cybersecurity firms are selling surveillance as a service. Medical misinfo is just the current branding.
It’s one thing to claim something is misinfo, it’s another to claim that what you’re seeing online is a national security threat that requires govt or public health intervention.
Some selling misinfo monitoring are overhyping medical misinformation to create market demand.
Some selling misinfo monitoring are overhyping medical misinformation to create market demand.
But, medical misinfo is very different from political disinfo and if we treat them the same, we’re going to make big mistakes in how we approach community engagement.
Monitoring health without consent is insidious surveillance and we don’t need anymore keystone cops online.
Monitoring health without consent is insidious surveillance and we don’t need anymore keystone cops online.
Worse though, we have very little understanding of those differences.
Last year, I was able to show that our lack of knowledge of community defense against disinfo threatened election integrity.
No big surprise there, but it’s a unique insight from working IN community.
Last year, I was able to show that our lack of knowledge of community defense against disinfo threatened election integrity.
No big surprise there, but it’s a unique insight from working IN community.
Now, we are waking up to the idea that the public understanding of science is imperiled by misinformation-at-scale.
Listen closely: the mechanisms that make fake news possible are not the the same ones enabling cloaked science, health grift, or anti-science conspiracies.
Listen closely: the mechanisms that make fake news possible are not the the same ones enabling cloaked science, health grift, or anti-science conspiracies.
How do I know that? I’ve done the research! When we looked at why white supremacists were taking ancestry tests, it wasn’t to find out what convinced them of the truth.... https://journals.sagepub.com/doi/full/10.1177/0306312719861434
It was entirely the opposite. We studied how they rationalize their false beliefs. Journalists hated to talk to me about this because they wanted to know if the dna tests changed white supremacists’ core beliefs about whiteness.
It didn’t. What mattered more to them was the responsiveness of people in their community and what they collectively took as evidence.
The generalizable insight is this: truth is the consensus of the community.
The generalizable insight is this: truth is the consensus of the community.
Now if you’re hunting for misinfo, you will find it everywhere.
Donovan’s law of disinformation: “there is no communication without misinformation.”
What’s key is finding how patterns emerge in community belief systems, while understanding how they guard against manipulation.
Donovan’s law of disinformation: “there is no communication without misinformation.”
What’s key is finding how patterns emerge in community belief systems, while understanding how they guard against manipulation.
It’s that interaction that helps us take action on misinfo. If there is no community defense against medical misinfo then it scales.
But, to blanketly assert that misinfo monitoring can lend greater insights than those coming from community based organizations is a grift.
But, to blanketly assert that misinfo monitoring can lend greater insights than those coming from community based organizations is a grift.
For example, misinfo monitoring groups are pushing overblown claims about the abusability of the CDC’s vaccine adverse event database. To assert that anti-vaxxers are “spreading misinfo about side effects” is to describe the ocean as wet.
What is needed are frameworks for community groups and health agencies that address when medical misinformation should be engaged, on what basis, and by whom...
The answers are always local and context dependent. Researchers should surface strategies from the grassroots.
The answers are always local and context dependent. Researchers should surface strategies from the grassroots.
Yet, medical misinfo monitoring is taking up valuable resources from public health groups.
What is needed desperately are public education campaigns that teach how to track misinfo locally and create processes for community responses.
What is needed desperately are public education campaigns that teach how to track misinfo locally and create processes for community responses.
Those who seek to pay off twitter influencers to spread awkward memes are, at best misguided and distracting, and at worse, dangerous because they divert funding from community-led programs.
I was lucky enough to be able to work with @nnlmgmr and @WHO on some pilot trainings for addressing the infodemic, based on our academic research: https://ajph.aphapublications.org/doi/10.2105/AJPH.2020.305922
Nevertheless, there’s a new wave of think tanks approaching medical misinfo as a content moderation problem, while PR firms are selling medical misinfo counter-messaging to “targeted communities.” The language is as bad as it seems.
Psychologists say that behavior change begins with awareness and then cultivated new attitudes.
How can we, the researchers, create awareness and change attitudes about medical misinformation in a way that doesn’t lead to more surveillance?
How can we, the researchers, create awareness and change attitudes about medical misinformation in a way that doesn’t lead to more surveillance?
If we can build awareness of the problem, we change attitudes. But in order to create awareness, we need knowledge. We can not leapfrog knowledge creation in the pursuit of “solutions.”
We should not create knowledge about communities. We should create knowledge WITH community.
We should not create knowledge about communities. We should create knowledge WITH community.
Not the kind of knowledge that is derived from a quick look at the data, but frameworks informed by research questions that can stand up to peer review. That requires the dual knowledge of knowing about media manipulation tactics coupled with scholarship on science communication.
I can do my part & hold some workshops about our case study method.
My hope is the next generation of critical internet studies don’t believe the hype about misinfo monitoring and instead devise ethical methods for investigating misinformation-at-scale. http://www.mediamanipulation.org
My hope is the next generation of critical internet studies don’t believe the hype about misinfo monitoring and instead devise ethical methods for investigating misinformation-at-scale. http://www.mediamanipulation.org
