1. Office of Public Health & Environmental Hazards Speaking with Veterans about Exposure Concerns: Risk Communication Implications Susan L. Santos, PhD, M.S. Assistant Director, Risk Communication & Education War Related Illness & Injury Study Center VA NJ Healthcare System East Orange, NJ

2. Disclaimer  The views expressed in this presentation are those of the author and do not necessarily represent the position of the Department of Veterans Affairs or the United States Government  I have no known conflicts of interest other than that I work for the Department of Veterans Affairs

3. Presentation Overview  Understanding Veterans’ exposure concerns  What is Risk Communication and when needed  Key principles of risk communication  Understanding risk perception and the importance of trust and credibility  Developing messages  Do’s and Don’ts of provider-Veteran communication

4. Top Ten Environmental Exposures of Concern: OEF/OIF 1.Smoke from burning trash or feces (44.6%) 2.Sand and dust storms (41.5%) 3.Gasoline, Jet Fuel, Diesel Fuel (21.1%) 4.Depleted Uranium (19.0%) 5.Paint, solvents, other petrochems (15.2%) 6.Oil well fire smoke (14.9%) 7.Contaminated food and water (14.4%) 8.Anthrax Vaccine (14.2%) 9.Multiple Vaccinations (13.9%) 10.Vehicular Exhaust (10.3%)

5. Top Ten Environmental Exposures: Gulf War 1.Protective gear/alarms (82.5 %) 2.Diesel, kerosene & other petrochemicals (80.6%) 3.Oil well fire smoke (66.9%) 4.Ate local food (64.5%) 5.Insect bites (63.7%) 6.Harsh weather (62.5%) N=651 7.Smoke from burning trash/feces (61.4%) 8.Within 1 mile of missile warfare (59.9%) 9.Repellants & Pesticides (47.5%) 10.Paint/solvents & petrochemicals (36.5%) Schneiderman AI, et al. American Public Health Association, 133 rd Annual Meeting, Philadelphia, PA, December 14, 2005.

6. 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

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 - Have clear goals  Identify and understand Veteran’s concerns, beliefs, perceptions, and prior knowledge  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. Know the Veteran  Important principle of risk communication is to know with whom you are communicating  Ongoing research suggests we need to take into account the Veteran’s overall social network and experiences – not just exposures and symptoms  Be careful about assumptions – e.g. why a Veteran associates exposures with health concerns

11. Importance Of Risk Perceptions  Related to health behavior, medical-decision making, and the processing of health information  Influenced by a wide variety of cognitive, motivational, and affective factors  Often lead to errors in risk perception among laypeople (including Veterans), media, “non experts”  Information does not cure “wrong” perceptions

12. Understanding Risk Perception 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

13. What Makes a Source Credible Empathy and/or Caring Competence and Expertise Honesty and Openness Commitment and Dedication Assessed in First 30-45 Seconds Assessed in First 30-45 Seconds

14. Institutional Trust and Perceived Risk  In addition to individual trust need to look at “Institutional trust” (trust in authorities)  Institutional trust domains include: openness, honesty, reliability, fairness, caring and integrity - Metlay 1999  Two primary factors: affective is most important (caring, openness, reliability, honesty, credibility and caring); 2 nd factor-competence

15. Institutional Trust and Perceived Risk  Numerous studies indicate that as institutional trust increases –perceived risk decreases -Flynn et. al., 1992; Siegrist et. al.,2000,2002; Allum, 2007  Magnitude of effect depends on population and hazard Perceived Risk Institutional trust

16. Who The Public Perceives As 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 MOST CREDIBLE 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. 5 Stage Model for Responding in Situations of High Concern and/or Low Trust

19. Designing Your Message  What your patient/Veteran want to know  What you think is critical  What they are likely to misunderstand, if you don’t address  Sensitivity to emotions, concerns, values, etc. Messages should include:

20. What Do You Think? “It wasn’t our accident, but we are absolutely responsible for the oil, for cleaning it up and that’s what we intend to do.” “What has failed here is the ultimate safety of the drilling rig…There are many barriers of protection that you have to go to before you get to this. It isn’t designed to not fail.” “There is limited or suggestive evidence of no association between deployment to the Gulf and lung disease … “

21. Example: Operation Enduring Freedom Veteran  24 year old healthy Veteran  Deployed to Afghanistan for 1 year  He was given 1 dose of anthrax vaccination prior to temporary suspension of the vaccine  He has concern about why this occurred  Vaccine safety  Quality control/approval of the vaccine  Involuntary

22. Risk Communication Approach  Listen to Veteran’s concern about vaccine safety  Explain the risk and benefits of vaccine  Explain vaccine safety with appropriate language  Acknowledge any “errors”  Understand concern about voluntary vs. involuntary risk  Check back on Veteran’s understanding

23. Differences Between Gulf War 1 & OEF/OIF Veterans  GW1 Veterans have health problems or symptoms they often relate to past exposures  OEF/OIF Veterans have questions and concerns, not necessarily linked to health problems or symptoms  Different communication goals  Inform/educate OEF/OIF Veterans  Understand perceptions and shift behaviors of prior Veterans

24. 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)

25. 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”

26. 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

27. 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