Communicating Public Health Policy During Periods of Uncertainty About Vaccine Safety

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

Do Vaccines Cause SIDS?

According to this poster, they do.

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

Origins of Uncertainty

Uncertainty stems from missing information:Scientific

uncertainty One-sided

information

Scientific Uncertainty

One-sided Information: Nick’s 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, Nick—who 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.

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.

The Dilemma

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

Q: So, how do we communicate uncertainty?

A: Using the principles of risk communication.

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; 360:166-68.

The Risk Communicator’s Goal*

Risk Communicator

(MedicalWriter)

ScientificAssessment

Of Risk

PublicPerception

Of Risk

* Adapted from Powell D. and Leiss W. Mad Cows and Mother’s Milk: The Perils of Poor Risk Communication. McGill-Queen’s University Press, 1997.

Opposing Views of Risk

Scientific Probabilistic Acceptable risk Changing

knowledge Comparative risk Population

averages A death is a

death

Intuitive Yes/no Safety Is it or isn’t it? Discrete events Personal

consequences It matters how

we die

Expert’s View

Public’s View

Opposing Views of Risk: Example Risk estimate from DTaP vaccine:

“Serious allergic reaction (less than 1 out of a million doses).”

Expert’s view: “Very rare reaction. So rare, we can’t even tell whether it is caused by the vaccine.”

Public’s view: “What if my child is the one in a million?”

Principle 1: Understand the public Find out what the public thinks—

what is its perception of the vaccine’s risk?

Show empathy for the public’s beliefs (even if their perception of the risk is inaccurate) and correct them without patronizing or ridiculing them.

Principle 2: Build or restore trust Announce as early as possible Acknowledge uncertainty Don’t over assure—avoid saying,

“everything is fine”; people may find it alarming

Be transparent—communication should be candid, clear, and accurate.

Principle 3: Share dilemmas Let the public know the reasons

behind the policy decisions and the dilemmas faced

Be open to suggestions—the public may help you decide

Example: the potential risk of thimerosal versus the actual risk of vaccine-preventable diseases

Principle 4: Be open Coordinate efforts and collaborate

with other organizations—professional groups, industry, government agencies, physicians

Make joint communications Respond to the media in a timely

manner—meet their deadlines and provide enough background information

Principle 5: Communicate clearly Explain the known science in lay terms Speculate responsibly—express 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

Principle 6: Show compassion* Show empathy for those suffering

from the “alleged adverse event”—for instance, recognize the burden of parents of autistic children

Avoid distant, abstract, unfeeling language about deaths, injuries, and illnesses—they are all tragedies

* Vincent T. Covello, Peter M. Sandman, and Paul Slovic. Risk Communication, Risk Statistics, and Risk Comparisons: A Manual for Plant Managers.

Q: Do these principles warrant success?

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

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!)

Vaccines and Autism: Why it won’t 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

Media Triggers*

1. Questions of blame.2. Alleged secrets and attempted cover-ups.3. Human interest through identifiable

heroes, villains, etc. (as well as victims).4. Links with existing high-profile issues or

personalities.5. Conflict.6. Signal value: What’s next?7. Many people exposed to the risk, even if at

low levels (It could be you!)8. 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.

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.

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.

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

How to Restore Trust (cont)

Trust the publicThat they will understand the

science (if they don’t, maybe it is our fault!)

That they will follow your directions (risk management) if you let them participate in the process

“This isn’t 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 experthttp://www.psandman.com/gst2005.htm#autism

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.