NIH Collaboratory Grand Rounds - Duke University...2019/07/19 · NIH Collaboratory Grand Rounds...
Transcript of NIH Collaboratory Grand Rounds - Duke University...2019/07/19 · NIH Collaboratory Grand Rounds...
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NIH Collaboratory Grand Rounds
Misinformation as a Source of Complication for Clinical Trials
Dr. Brian [email protected]
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Is misinformation a prime suspect for clinical trial refusal or treatment avoidance?
Clinical trials from the patient perspective: survey in an online patient community
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Does misinformation reduce clinical trial participation?
• Information reach – lack of information – is major concern:
• Many patients willing to enroll yet few invited (DasMahapatra et al., 2017)
• Misinformation also likely discourages trial participation.
Source: DasMahapatra et al. (2017). Clinical trials from the patient perspective: survey in an online patient community. BMC Health Serv Res. 2017; 17: 166. doi: 10.1186/s12913-017-2090-x
Clinical trials from the patient perspective: survey in an online patient community
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Cleveland Clinic dispels key myths, including:
• “Informed consent exists primarily to protect researchers’ legal interests”
• “Clinical research patients are taking sugar pills”
• “You need to live near a major hospital to participate”
Source: https://health.clevelandclinic.org/10-biggest-cancer-clinical-trial-myths-busted/
Misinformation about clinical trials?
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Misinformation and distrust of treatment?
• Example: Navar (2019) warns of inaccurate online claims that statins cause memory loss, cataracts, pancreatic dysfunction, Lou Gehrig disease, and cancer.
Source: Navar, A. M. (2019). Fear-based medical misinformation and disease prevention: From vaccines to statins. JAMA Cardiology. Available online: doi:10.1001/jamacardio.2019.1972
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Misinformation and distrust of treatment?
• Example: Navar (2019) warns of inaccurate online claims that statins cause memory loss, cataracts, pancreatic dysfunction, Lou Gehrig disease, and cancer.
Source: Navar, A. M. (2019). Fear-based medical misinformation and disease prevention: From vaccines to statins. JAMA Cardiology. Available online: doi:10.1001/jamacardio.2019.1972
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From whence does misinformation arise?
Questionable websites attempting to sell products...
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From whence does misinformation arise?
But also health education from advocacy organizations…
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From whence does misinformation arise?
And even through diffusion of conventional journalism...
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From whence does misinformation arise?
Brody mentions FDA reference to risk of reversible memory loss but puts it in appropriate context.
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Do we misunderstand misinformation?
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Do we misunderstand misinformation?
:
• Misinformation is not all equal in consequence.
• New media platforms differ from old in authorship, oversight, and algorithms.
• Misinformation can have indirect effects aside from acute, short-term ones.
• Misinformation correction may itself have unintended consequences.
• System-level challenges warrant system-level, future-oriented remedies.
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Avoid using sentences that will already be used
when talking
Emerging literature on misinformation highlights our own humanity.
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Do we misunderstand our own vulnerabilities?
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Do we misunderstand our own vulnerabilities?
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We need social connection.
We need hope for future.
The lack of either affords opportunity for medical misinformation effect.
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Image: The Australian Women’s Weekly
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“Anti-vaccination activists have enjoyed particular success in communities whose cultural isolation makes them easy prey for misinformation.”
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Our multifaceted vulnerabilities
biased toward acceptance
reasons why we share
regulatory approach
• Correction is hard
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Was Spinoza right?
Images sources: Encyclopædia Britannica and biography.com
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Why do people share misinformation?
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Why do people share misinformation?
Some possibilities other than malice:
• Accidental or unintended spread• Our needs for social bonding• Information seeking and efforts for validation
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Why rumors spread
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Why rumors spread
• Discomfort of uncertainty
• Lack of corrective information
• Also: information as potential relationship currency
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Might emotions make us vulnerable?
• Yes.• Anger encourages inaccurate information acceptance.
Example: Weeks, B. E. (2015). Emotions, partisanship, and misperceptions: how anger and anxiety moderate the effect of partisan bias on susceptibility to political misinformation. Journal of Communication, 65, 699-719.
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Our reactive regulatory tendency doesn’t guarantee misinformation won’t appear
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Studies support some corrective potential…
• Aikin et al. (2015). Journal of Communication.
• Aikin et al. (2017). Research in Social and Administrative Pharmacy.
• Bode & Vraga. (2015). Journal of Communication.
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Studies support some corrective potential…
• Aikin et al. (2015). Journal of Communication.
• Aikin et al. (2017). Research in Social and Administrative Pharmacy.
• Bode & Vraga. (2015). Journal of Communication.
… direct rebuttal and large-scale exposure needed.
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Is misinformation culprit? Are we partly culpable?
Are we vulnerable to medical misinformation?
• Yes
Is misinformation ever sown for others’ gain?
• Yes
Is misinformation sharing between patients illogical or malicious?
• Not necessarily
Is there a path forward?
• Yes
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What if…
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What if…
• we find (and share) misinformation when earnestly searching for answers?
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What if…
• we find (and share) misinformation when earnestly searching for answers?
• we would turn to peer-reviewed research if it was accessible, available, and trusted?
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What if…
• we find (and share) misinformation when earnestly searching for answers?
• we would turn to peer-reviewed research if it was accessible, available, and trusted?
• we could inoculate people against inaccurate sources while acknowledging common questions and concerns?
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What do we need to do?
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What do we need to do?
• Consider interaction of human psychology, news norms, governance, and health systems.
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What do we need to do?
• Consider interaction of human psychology, news norms, governance, and health systems.
• Monitor and seek to understand – rather than prejudge – patient information environments.
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What do we need to do?
• Consider interaction of human psychology, news norms, governance, and health systems.
• Monitor and seek to understand – rather than prejudge – patient information environments.
• Build and maintain trust between health care systems and patients by acknowledging shared interests.
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Let’s connect.
Dr. Brian Southwell
@BrianSouthwell