1. Office of Public Health and Environmental Hazards Part Two of the 2011 WRIISC Webinar Series March 16, 2011 Risk Communication and Communicating with Patients

2. Office of Public Health and Environmental Hazards Presented By: Susan L. Santos, PhD, MS Assistant Director, Risk Communication and Education War Related Illness & Injury Study Center VA NJ Health Care System East Orange, NJ ssantos.focusgroup@comcast.net

3. Office of Public Health and Environmental Hazards WRIISC Webinar Series  Pulmonary Effects of Combat Theater Exposures Presented by Ron Teichman, MD, MPH, FACP, FACOEM Tuesday 5/24 @ 1:00pm EST  TBI and PTSD in Post-Deployment Veterans Presented by Steven Chao, MD, PhD and colleagues Monday, 6/27, 1:00pm EST  Information available at www.warrelatedillness.va.gov (973)-676-1000 x1177 or wriisc.nj@va.gov  A special Thank You to Employee Education System (EES) for their support and assistance

4. Office of Public Health and Environmental Hazards Some Reminders Please place your phones on mute. Please place the microphone on LiveMeeting to mute. For the audio portion of this presentation, call VANTS at: 800-767-1750, Code: 14821# Q&A – Please submit your questions anytime during the presentation by using the “Q&A” button at the top of your Live Meeting screen. Questions will be addressed at the end of the presentation.

5. Office of Public Health and Environmental Hazards War Related Illness & Injury Study Center (WRIISC)  WRIISC (pronounced “risk”) is a National Program in three locations (CA, DC, and NJ)  Expert “second opinion” resource on issues regarding post- deployment health  Four areas: Research, Clinical, Education, and Risk Communication  We provide clinical evaluations for Veterans with difficult to diagnose conditions and/or deployment related exposure concerns  This Webinar series is part of our efforts to educate the VA Provider community

6. Office of Public Health and Environmental Hazards What We’ll Cover  What is Risk Communication and why is it important?  Principles of risk communication  Understanding risk perception and how it effects communication  Importance of trust & credibility  Do’s and Don’ts of provider- Veteran communication

7. Office of Public Health and Environmental Hazards The Role of Risk Communication in Communicating with Veterans “Risk Communication after a deployment is a crucial component of the appropriate care and support for the service member upon his or her return” Persian Gulf Veterans Coordinating Board (1999) “Efforts at risk communication must be part of an overall effort to see that returning service members are treated with gratitude and provided with medical care and support services to ease their readjustment” IOM (1999)

8. Office of Public Health and Environmental Hazards 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)

9. Office of Public Health and Environmental Hazards When Is Risk Communication Needed?  High concern  Low trust  Communicating complex information  High uncertainty or expert disagreement  Differential relationships of power

10. Office of Public Health and Environmental Hazards Principles of Effective Risk Communication  Risk communication needs to be a dialogue (“two-way”) it means listening not just risk speak  Know why you are communicating – Have clear goals  Set a shared agenda with the Veteran – share “control”  Identify and understand Veteran’s concerns, beliefs, perceptions, and prior knowledge

11. Office of Public Health and Environmental Hazards Principles Of Effective Communication  Tailor communication/messages to address Veteran perceptions, concerns and your needs  Ensure consistency or explain discrepancies  Structure communication to respond to concerns and provide information to facilitate collaborative decision- making  Check back on understanding  The person communicating must be perceived as trustworthy and credible

12. Office of Public Health and Environmental Hazards Increase awareness Inform and educate Change behavior Promote problem-solving and collaborative decision making Know Your Communication Goals

13. Office of Public Health and Environmental Hazards Set a Shared Agenda  Often, time for provider-Veteran visits are limited  Listen to the Veteran’s top concerns and reasons for the visit  Setting an agreed to agenda for the visit up front is important  Be sure you are addressing the Veteran’s top questions/concerns – not just your own agenda  Set a collaborative tone

14. Office of Public Health and Environmental Hazards Know the Veteran Important principle of risk communication is to know with whom you are communicating This means knowing the Veteran as a person as well as a “patient” Identify current concerns, beliefs, knowledge levels, who they trust for information, etc. Be careful about assumptions – e.g. why a Veteran associates exposures with health concerns

15. Office of Public Health and Environmental Hazards Perception = Reality What is perceived as real is real in its consequences Perceptions form quickly; beliefs more slowly Effective risk communication requires knowledge and understanding of your patient’s/Veterans’ perceptions

16. Office of Public Health and Environmental Hazards Importance Of Risk Perceptions In Communicating About Risks  Related to health behavior, the processing of health information, and medical-decision making  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

17. Office of Public Health and Environmental Hazards 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 which heightened concerns  Having information on exposure potential is important

18. Office of Public Health and Environmental Hazards What The Research Tells Us  Public/Veterans tend to equate any degree of exposure with harm  Physicians use more of a “lay” mental model when evaluating certain health risks  Public/Veterans rely on other mental “cues” for processing risk information  Public/Veterans weigh risk and benefit differently than physicians or scientists

19. Office of Public Health and Environmental Hazards Top Ten Environmental Exposures of Concern: OEF/OIF

20. Office of Public Health and Environmental Hazards 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 A, et al. American Public Health Association, 133 rd Annual Meeting, Philadelphia, PA, December 14, 2005.

21. Office of Public Health and Environmental Hazards Concern Over Burn Pits

22. Office of Public Health and Environmental Hazards 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

23. Office of Public Health and Environmental Hazards Concerns About H1N1 Vaccine Safety

24. Office of Public Health and Environmental Hazards 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 casual explanations

25. Office of Public Health and Environmental Hazards Risk Perception Model Somatic Change Triggers Sensory Cues Emotion and Stress Risk Perception Mental Models Expectations Illness Perception and Interpretation Illness

26. Office of Public Health and Environmental Hazards Trust and Credibility of the Communicator is Key Empathy and/or Caring Competence and Expertise Honesty and Openness Commitment and Dedication Assessed at start of communication

27. Office of Public Health and Environmental Hazards Institutional Trust and Perceived Risk  Veterans may trust their individual provider but also 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

28. Office of Public Health and Environmental Hazards 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

29. Office of Public Health and Environmental Hazards Institutional Trust

30. Office of Public Health and Environmental Hazards Who The Public Perceives As 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

31. Office of Public Health and Environmental Hazards Estabilishing Trust & Credibility  Third party endorsements from credible sources  Demonstrating supporting characteristics  Caring  Honesty  Competence  Dedication  Organizational credibility  Consistency  Accessibility  Track Record

32. Office of Public Health and Environmental Hazards Risk Perception and Uncertainty  Scientists/physicians recognize uncertainty exists and information will change over time  Veterans/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

33. Office of Public Health and Environmental Hazards BP Workers Safety Concern

34. Office of Public Health and Environmental Hazards Communicating Uncertainty  Be upfront and clear about uncertainties but take care not to overwhelm the patient/Veteran with them  Say what has/will/can be done to reduce the uncertainty further  Describe ongoing monitoring efforts (“watchful waiting”), ongoing studies, etc  Describe steps the individual can take

35. Office of Public Health and Environmental Hazards Putting it all Together for Effective Communication Experience/ExpressConcern/Empathy Achieve/ConveyUnderstanding ProvideInformation Explore/Articulate Implications Follow Up Actions

36. Office of Public Health and Environmental Hazards 5 Stage Model for Responding in Situations of High Concern and/or Low Trust

37. Office of Public Health and Environmental Hazards Effective Communication Requires Listening…  It’s human nature to not listen  Ways of not listening vary:  Common alternatives to listening: Answering (assert, refute, argue or defend?) Perfunctory acknowledgment (“I appreciate what you’re saying, but...”)  Conspicuous ways of not listening: Reprimanding Laying down the law Non-Verbal Cues

38. Office of Public Health and Environmental Hazards Elements of Active Listening  Acknowledging you hear  Encouraging the other person to say more  Actively exploring his or her perspective  Testing the meaning to the other person  Paraphrase by repeating back without inserting your own point of view

39. Office of Public Health and Environmental Hazards Responses That Help Communication  Paraphrasing  “So you’re thinking that...”  “Sounds like you are concerned that...”  “You feel... because...”  “I’m hearing that...”  “Let me see if I understand what you are saying...”

40. Office of Public Health and Environmental Hazards Active Listening: It’s More Than Words  Paraphrasing  Body Language  Voice Tone  Feeling Words  Word Emphasis  Emotions Behind the Words

41. Office of Public Health and Environmental Hazards Non Verbals Matter

42. Office of Public Health and Environmental Hazards Using “Negatives” Confounds Communication “It wasn’t our accident, we are not responsible 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… “

43. Office of Public Health and Environmental Hazards Delivering Your Message Messages should include:  What your patient/Veteran want to know (i.e. address their top concerns first!)  What you think is critical  What they are likely to misunderstand, if you don’t address  Sensitivity to emotions, concerns, values, etc.

44. Office of Public Health and Environmental Hazards 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

45. Office of Public Health and Environmental Hazards 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

46. Office of Public Health and Environmental Hazards Provider/Veteran Communication  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 key concepts  Explain how exposure is determined  Explain what a “syndrome is”  Translate dose-response  Assist with knowledge gap (e.g. that any level of exposure may cause harm)

47. Office of Public Health and Environmental Hazards Provider/Veteran Communication Provider/Veteran perception of uncertainty likely differs “We have no data to suggest that…”; “It doesn’t appear that…” Try to “bound” the uncertainty Explain uncertainty The Veteran’s understanding of what you have found and not found Reflect Back Goal is to increase Veteran participation in decision-making “Let’s work on this together!” Be collaborative

48. Office of Public Health and Environmental Hazards Provider/Veteran Communication  Not having the answer - is ok! You don’t have to but…  Be sure to follow up - where else can they get information/ who else can help; concept of watchful waiting  Avoid negative responses “I don’t have time to answer your concerns.” “I agree with you but I can’t say that…” “I don’t think I can help you.” “You wouldn’t feel so badly if you would just lose weigh and stop smoking.”

49. Office of Public Health and Environmental Hazards 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 what you do Don’t use medical short-cuts

50. Office of Public Health and Environmental Hazards Summary Dealing with exposure concerns Dealing with medically unexplained symptoms Dealing with high uncertainty Risk communication is an important part of Provider/Veteran communication 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

51. Office of Public Health and Environmental Hazards Resources and References  The Perception of Risk, Slovic, P. (ed.) (pp.80-103) Earthscan Publications Ltd, London 2000.  Scammell, M., Senier, L., Darrah-Okike, J., Brown, P., Santos, S.L. “Tangible evidence, trust and power: Public perceptions of community environmental health studies” Social Science & Medicine Vol 68, issue 1, January 2009, 143-153.  Santos, S.L. “Risk Communication”. In Environmental Health Risk Assessment. M. Robson & W. Toscano eds.(pp.463-486) Association of Schools of Public Health (Sponsor) Josey-Bass, San Francisco, CA 2007.  Lundgren, R.E., McMakin, A.H., Risk Communication: A Handbook for Communicating Environmental, Safety, and Health Risks, 4 th edition, John Wiley & Sons, Inc, Hoboken, NJ, 2009  Santos, S.L. and McCallum, David B., “Communicating to the Public: Using Risk Comparisons”, Human and Ecological Risk Assessment Journal, CRC Press, Vol. 3, No 6, December 1997

52. Office of Public Health and Environmental Hazards War Related Illness & Injury Study Center (WRIISC)  WRIISC is a National Program in three locations (CA, DC, and NJ)  Expert “second opinion” resource on issues regarding post- deployment health  Four areas: Research, Clinical, Education, and Risk Communication  We provide clinical evaluations for Veterans with difficult to diagnose conditions and/or deployment related exposure concerns  What’s next: Upcoming Webinars in May and June. Upcoming WRIISC conferences on March 30-31 Caring for Veterans with Post Deployment Concerns: Past, Present and Future, Seattle Washington; and Caring for Veterans: Moving Forward in Providing Quality Care, August 9-10, Washington DC.

53. Office of Public Health and Environmental Hazards WRIISC Referrals  WRIISC National Referral Program  Second opinion evaluations for Veterans  Please visit our website for referral information: http://www.warrelatedillness.va.gov/referral.asp Complete WRIISC Assessment Form in CPRS Fax Pre-Screen Application and DD-214

54. Office of Public Health and Environmental Hazards For More Information  Visit our National Web site:  www.warrelatedillness.va.gov  Or call one of our three centers:  East Orange, NJ– 800-248-8005  Palo Alto, CA– 888-482-4376  Washington, DC– 800-722-8340