Communicating Public Health Policy During Periods of Uncertainty About Vaccine Safety

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Communicating Public Health Policy During Periods
of Uncertainty About Vaccine Safety

• Diego Pineda, MSImmunizations for Public Health
  (i4ph) -Galveston, TX

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Do Vaccines Cause SIDS?
According to this poster, they do.
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Do Vaccines Cause SIDS?

• Based on this review, the committee concluded
  that the evidence favors rejection of a causal
  relationship between some vaccines and SIDS and
  that the evidence is inadequate to accept or
  reject a causal relationship between other
  vaccines and SIDS, SUDI, or neonatal death. The
  evidence regarding biological mechanisms is
  essentially theoretical, reflecting in large
  measure the lack of knowledge concerning the
  pathogenesis of SIDS.
• Institute of Medicine

Immunization Safety Review Vaccinations and
Sudden Unexpected Death in Infancy
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Origins of Uncertainty

• Uncertainty stems from missing information
• Scientific uncertainty
• One-sided information

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Scientific Uncertainty
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One-sided Information Nicks story

• In the early 1990s, the Morris family from
  Columbus, Georgia, saw the news about the scary
  adverse events supposedly happening after DTP
  vaccination.
• They chose not to complete the series of shots
  for their son, Nickwho had only had one dose by
  then.
• At age four, Nick contracted whooping cough.
  Violent coughing attacks made him vomit and his
  face turn blue. He had to be hospitalized with
  pertussis complications that almost took his life
  away.
• Mr. Morris later said that the media frightened
  him by stating the risks of the vaccine without
  noting the risks of whooping cough.

Based on a story first published in the Winter
1999 issue of the "Immunize Georgia's Little
Guys" newsletter of Children's Healthcare of
Atlanta.
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Pubic Health Policy and Vaccine Safety Issues

• Public health officials compare the risk of an
  adverse event of concern with the risk of the
  disease, based on available data.
• The results of their analyses guide policy
  recommendations even in the absence of all the
  desired information.

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The Dilemma

• Even in the midst of uncertainty, public health
  officials have to make policy decisions!

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Q So, how do we communicate uncertainty?

• A Using the principles of risk communication.

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Risk Communication (RC)

• RC is the communication of the probability and
  uncertainty that a particular hazard will cause
  an effect (and of how to manage that risk).

Calman KC. Communication of risk choice,
consent, and trust. Lancet 2002 360166-68.
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The Risk Communicators Goal
Risk Communicator (Medical Writer)
Scientific Assessment Of Risk
Public Perception Of Risk
Adapted from Powell D. and Leiss W. Mad Cows
and Mothers Milk The Perils of Poor Risk
Communication. McGill-Queens University Press,
1997.
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Opposing Views of Risk
Experts View
Publics View

• Scientific
• Probabilistic
• Acceptable risk
• Changing knowledge
• Comparative risk
• Population averages
• A death is a death

• Intuitive
• Yes/no
• Safety
• Is it or isnt it?
• Discrete events
• Personal consequences
• It matters how we die

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Opposing Views of Risk Example

• Risk estimate from DTaP vaccine Serious
  allergic reaction (less than 1 out of a million
  doses).
• Experts view Very rare reaction. So rare, we
  cant even tell whether it is caused by the
  vaccine.
• Publics view What if my child is the one in a
  million?

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Principle 1 Understand the public

• Find out what the public thinkswhat is its
  perception of the vaccines risk?
• Show empathy for the publics beliefs (even if
  their perception of the risk is inaccurate) and
  correct them without patronizing or ridiculing
  them.

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Principle 2 Build or restore trust

• Announce as early as possible
• Acknowledge uncertainty
• Dont over assureavoid saying, everything is
  fine people may find it alarming
• Be transparentcommunication should be candid,
  clear, and accurate.

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Principle 3 Share dilemmas

• Let the public know the reasons behind the policy
  decisions and the dilemmas faced
• Be open to suggestionsthe public may help you
  decide
• Example the potential risk of thimerosal versus
  the actual risk of vaccine-preventable diseases

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Principle 4 Be open

• Coordinate efforts and collaborate with other
  organizationsprofessional groups, industry,
  government agencies, physicians
• Make joint communications
• Respond to the media in a timely mannermeet
  their deadlines and provide enough background
  information

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Principle 5 Communicate clearly

• Explain the known science in lay terms
• Speculate responsiblyexpress your expectations,
  acknowledging you could be wrong
• Use risk comparisons to help put risks in
  perspective
• Balance the use of anecdotes and data
  (statistics)
• Separate science from pseudoscience

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Principle 6 Show compassion

• Show empathy for those suffering from the
  alleged adverse eventfor instance, recognize
  the burden of parents of autistic children
• Avoid distant, abstract, unfeeling language about
  deaths, injuries, and illnessesthey are all
  tragedies

Vincent T. Covello, Peter M. Sandman, and Paul
Slovic. Risk Communication, Risk Statistics, and
Risk Comparisons A Manual for Plant Managers.
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Q Do these principles warrant success?

• A Not necessarily. Risk communication is not
  risk-free.

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Vaccines and Autism A Case of Failed Risk
Communication?

• 1999 High Uncertainty
• Announced early
• Scientific uncertainty acknowledged
• Collaboration between AAP and HHS Interagency
  Vaccine Group
• 2007 Low Uncertainty
• Strong science rejecting the link (IOM 2004)
• But the issue is still alive in the media (and in
  court!)

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Vaccines and Autism Why it wont go away (just
yet)

• Vaccines have always caused controversy
• No established cause for autism
• Public mistrust of the current risk assessment
  and management
• Misinformation widely available
• Conflicts of interest (perceived and real)
• Pseudoscience
• Risk perception driven by the media

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Media Triggers

• Questions of blame.
• Alleged secrets and attempted cover-ups.
• Human interest through identifiable heroes,
  villains, etc. (as well as victims).
• Links with existing high-profile issues or
  personalities.
• Conflict.
• Signal value Whats next?
• Many people exposed to the risk, even if at low
  levels (It could be you!)
• Strong visual impact (pictures of suffering)

Bennett P. Understanding responses to risk
some basic findings. In Bennett P and Calman K
(Editors).Risk Communication and Public Health.
New York Oxford University Press, 1999.
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Fright Factors

• Risk is involuntary
• Risk seen as inequitable
• Risk seen as inescapable
• Risk is man-made
• Hidden and irreversible damage
• Damage to children
• Risk poorly understood by science
• Contradictory statements from responsible sources

Bennett P and Calman K (Editors). Risk
Communication and Public Health. New York Oxford
University Press, 1999.
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Research shows that information alone does not
generally lead to changes in behavior.We have
to restore trust!

• Lundgren R. and Mcmakin A. Risk Communication
  A Handbook for Communicating Environmental,
  Safety, and Health Risks (3rd edition). Columbus,
  OH Battelle Press, 2004.

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How to Restore Trust

• Addressing public concerns with actions, even in
  the midst of uncertainty (like removing
  thimerosal from vaccines or strengthening vaccine
  safety research)
• Striving for credible and open risk assessment
  and management
• Not withholding contrary information

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How to Restore Trust (cont)

• Trust the public
• That they will understand the science (if they
  dont, maybe it is our fault!)
• That they will follow your directions (risk
  management) if you let them participate in the
  process

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This isnt a fight between hysterical
vaccination opponents and calm, rational
vaccination proponents. Both sides, at their
worst, behave like children one side shrill,
the other patronizing, and neither entirely
honest. Peter Sandman, Risk Communication
expert http//www.psandman.com/gst2005.htmautism
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Suggested Reading

• Slovic, P. The Perception of Risk. Sterling VA
  Earthscan Publications, 2000.
• Bennett P and Calman K (Editors). Risk
  Communication and Public Health. New York Oxford
  University Press, 1999.
• Lundgren R. and Mcmakin A. Risk Communication A
  Handbook for Communicating Environmental, Safety,
  and Health Risks (3rd edition). Columbus, OH
  Battelle Press, 2004.