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Misinformation as a Source of NIH Collaboratory Complication for - - PowerPoint PPT Presentation

Dec 25, 2022 15 likes •386 views

Misinformation as a Source of NIH Collaboratory Complication for Clinical Trials Grand Rounds Dr. Brian Southwell bsouthwell@rti.org brian.southwell@duke.edu Is misinformation a prime suspect for clinical trial refusal or treatment

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NIH Collaboratory Grand Rounds Misinformation as a Source of Complication for Clinical Trials

  • Dr. Brian Southwell

bsouthwell@rti.org brian.southwell@duke.edu

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Is misinformation a prime suspect for clinical trial refusal

  • r treatment

avoidance?

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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

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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,
  • versight, 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-
  • riented remedies.

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Avoid using sentences that will already be used when talking

Emerging literature on misinformation highlights

  • ur own humanity.
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Do we misunderstand

  • ur own

vulnerabilities?

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Do we misunderstand

  • ur own

vulnerabilities?

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We need social connection. We need hope for future. The lack of either affords

  • pportunity 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

brian.southwell@duke.edu bsouthwell@rti.org @BrianSouthwell