Risk Perception and Communication in Addressing Exposure Concerns

1. Risk Perception and Communication in Addressing Exposure Concerns Susan L. Santos, Ph.D., M.S. War Related Illness & Injury Study Center VA NJ Healthcare System East Orange, NJ

2. Overview • Veterans’ exposure concerns • Principles and implications of risk communication • Understanding risk perception • Do’s and Don’ts of provider-Veteran communication

3. Top Ten Environmental Exposures: Gulf War • Protective gear/alarms (82.5 %) • Diesel, kerosene & other petrochemicals (80.6%) • Oil well fire smoke (66.9%) • Ate local food (64.5%) • Insect bites (63.7%) • Harsh weather (62.5%) N=651 • Smoke from burning trash/feces (61.4%) • Within 1 mile of missile warfare (59.9%) • Repellants & Pesticides (47.5%) • Paint/solvents & petrochemicals (36.5%) Schneiderman AI, et al. American Public Health Association, 133rd Annual Meeting, Philadelphia, PA, December 14, 2005.

4. Data from Risk Perception Pilot Survey and Focus Groups Primarily Gulf War Veterans Substances mentioned as having the most exposure: ModerateHigh • Air Pollution 28.6% 54.3% • Petrochemicals 25.7% 45.7% • Vaccines 11.6% 68.8% • Pesticides 28.6% 22.9% Most unsure of being exposed was: • Depleted Uranium 37.1%

5. Data from Risk Perception Pilot Survey and Focus Groups • Sensory cues are viewed as evidence of exposure • Protective measures (alarms, suits) are seen as evidence of exposure vs limiting the potential for exposure • Dread, uncertainty and lack of trust exacerbate health concerns • Veterans aware of media coverage of exposure concerns • Having information on exposure potential is important

6. Top Ten Environmental Exposures of concern: OEF/OIF • Smoke from burning trash or feces (44.6%) • Sand and dust storms (41.5%) • Gasoline, Jet Fuel, Diesel Fuel (21.1%) • Depleted Uranium (19.0%) • Paint, solvents, other petrochems (15.2%) • Oil well fire smoke (14.9%) • Contaminated food and water (14.4%) • Anthrax Vaccine (14.2%) • Multiple Vaccinations (13.9%) • Vehicular Exhaust (10.3%)

7. What is Risk Communication? • “… an interactive process of exchange of information and opinions among individuals, groups, and institutions.” • “It involves multiple messages about the nature of risk and other messages… that express concerns, opinions or reactions to risk messages… as well as information on what to do to control/manage the (health) risk.” (National Research Council, 1989)

8. Why Risk Communication? • High concern • Low trust • Differential relationships of power • Communicating complex information • High uncertainty or expert disagreement

9. Principles of Effective Risk Communication • Know why you are communicating • Identify and understand your patient’s concerns, beliefs and perceptions • Recognize that trust and credibility are key • Structure provider-Veteran communication to respond to Veteran’s concerns and provide information to facilitate collaborative decision- making • Good risk communication is two-way - listening not risk speak

10. Risk Perception and the Importance of Trust and Credibility

11. Know Your Audience • Effective communication requires knowing your patient as a person – and enables you to understand the patient’s problems and concerns from their perspective • Understand their perceptions as valid and rational…not “misconceptions” • Understand the patient’s theories, beliefs, and prognosis of illness/symptoms as part of exposure assessment

12. “Expert” Assessment of Risk Scientific Probabilistic Acceptable Risk Changing Knowledge Comparative Risk Population Averages A death is a death “Public”/Media Assessment of Risk Intuitive Yes/No Safety Is it or isn’t it? Discrete Events Personal Consequences It matters how we die There are Two Languages Communicating Health Risk

13. Importance Of Risk Perceptions • Risk perceptions are related to health behavior, medical-decision making, and the processing of health information • Lay risk perception is influenced by a wide variety of cognitive, motivational, and affective factors • These psychological processes often lead to errors in risk perception among laypeople and the media • Information does not cure “wrong” perceptions

14. Less Risky Voluntary Individual Control Familiar Low Dread Affects Everybody Naturally Occurring Little Media Attention Understood High Trust Consequences Limited/Known Benefits Understood Alternatives Available More Risky Involuntary Controlled by Others Unfamiliar High Dread Affects Children Human Origin High Media Attention Not Understood Low Trust Catastrophic Consequences Benefits Unclear No Alternatives Understanding Risk Perception

15. What Makes A Source Credible Assessed in First 30 Seconds Empathy and/or Caring Competence and Expertise Commitment and Dedication Honesty and Openness

16. Who The Public PerceivesAs Credible MOST CREDIBLE • Local citizens perceived as neutral, respected, informed about the issue • Health/safety professionals (nurses, physicians, firefighters) • Professors/educators (especially from respected local institutions) • Clergy • Non-profit organizations • Media • Environmental/advocacy groups • Federal government • State/local government • Industry • “For profit” consultants LEAST CREDIBLE

17. Establishing Trust & Credibility • Third party endorsements from credible sources • Demonstrating supporting characteristics • Caring • Honesty • Competence • Dedication • Organizational credibility • Consistency • Accessibility • Track Record

18. Risk Perception and Uncertainty • Scientists/physicians recognize uncertainty exists and information will change over time • Lay persons view changing or incomplete information as a sign of uncertainty and lack of knowledge • High uncertainty increases perception of risk • People see uncertainty as greater if unfavorable information is presented last

19. Risk Perception & Symptom Reporting • Perceptions of illness associated with chemical, biologic, etc. exposure can result from psychological processes individuals apply to understanding and interpreting physical experiences and events • Symptoms are experienced within a psychosocial context which gives meaning to the symptomology and a framework for causal explanations

20. Risk Perception Mental Models Expectations Somatic Change Illness Perception and Interpretation Emotion and Stress Illness Triggers sensory cues Risk Perception Model Fig. 1. Model of the relationship between risk perception, stress, somatic change, and illness perception

21. 5 Stage Model for Responding in Situations of High Concern and/or Low Trust • Active listening and emphatic responses • Provide short clear statements of findings -- your main point • Provide 1-2 facts to support main point • Repeat the statement/main point • Next steps/follow-up by provider and patient

22. Physician-Veteran Communication • Listen and restate the Veteran’s concern • Discuss important concepts in assessing exposure • Route and duration of exposure • Concept of dose-response • Determine Veteran’s exposure profile • Discuss risk of long-term health effects in relation to type of exposure

23. Physician-Veteran Communication • Explain exposure and relationship with symptoms of concern/health problems • Address risk perception issues including uncertainty • Involve the Veteran in examining the research • Acknowledge “errors” as needed • Discuss provider’s basis for conclusions • Check back on Veteran’s understanding

24. Physician-Veteran Communication • Manage expectations – Veterans and providers • Acknowledge perceptions about beliefs • e.g. Low trust, frustration about classified information, changing science, etc. • Avoid debate or being confrontational • Listening opens channels of communication • Provide objective scientific information and have a dialogue

25. Differences between Gulf War and Prior Veterans • Prior Veterans have health problems or symptoms they relate to past exposures • Current Veterans have questions and concerns, not necessarily health problems or symptoms • Different communication goals • Inform/educate OEF/OIF Veterans • Understand perceptions and shift behaviors of prior Veterans

26. Do’s and Don’ts • Listen: Risk communication is two-way • Veteran has much information to offer • Recognize empathy and trust are extremely important • Convey caring before information/science • Explain concepts of exposure • Explain how exposure is determined • Translate dose-response • Assist with knowledge gap (belief that any level of exposure may cause harm)

27. Do’s and Don’ts • Explain uncertainty • Provider/Veteran perception of uncertainty likely differs • “We have no data to suggest that…”; “It doesn’t appear that…” • Important to “bound it” with explanation • Reflect Back • The Veteran’s understanding of what you find and do not find • Be collaborative • Goal is to increase Veteran participation in decision-making • “Let’s work on this together”

28. Do’s and Don’ts • Treat Veterans with dignity and respect • Their worldview/perception is valid, not misperception • Don’t rely on your position of authority • Not a substitute for good communication • Don’t try to convince them you have more knowledge: Instead, explain why you believe • Don’t use medical short-cuts

29. Summary • Risk communication is an important part of addressing Veterans’ exposure concerns • There are things you can do to improve communication • Recognize our goal is to assist the Veteran in making the best decisions to support their health and well-being