Communicating Risk & Benefit to Health Care Providers & Patients

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Communicating Risk & Benefit to Health Care Providers & Patients Richard L. Morin, Ph.D. Mayo Clinic Florida

Radiation Risk Need to know information about Radiation and information about Risk

Radiation Facts - Scientific Methods and Technology Dialogue to Clarify Legitimacy - Norms EuroScience Open Forum 2004 Björn Hedberg, SSI 3 Authenticity -Personal and organisationa integrity/identity/truthfulness -What builds Trust

But what builds Trust? Components of trust (Institutional trustworthiness) Ortwin Renn (98) Competence Openness Fairness Empathy Factors in assessing trust and credibility Vincent Covello (93) Competence & expertise Honesty & openness Dedication & commitment Empathy & caring EuroScience Open Forum 2004 Björn Hedberg, SSI 4

Collective Statistical Illiteracy in Health Care 1. Few physicians, patients, and politicians understand health statistics. Until they do, informed decision-making will remain science fiction. 2. Collective Statistical Illiteracy is largely caused by - non-transparent framing of information, unwittingly or intentionally, and - lack of efficient training in risk communication in medical schools and the educational system in general. 3. There s a simple solution: teach and implement transparent risk communication.

Collective Statistical Illiteracy I Politicians

"I had prostate cancer, five, six years ago. My chances of surviving prostate cancer and thank God I was cured of it, in the United States, 82 percent. My chances of surviving prostate cancer in England, only 44 percent under socialized medicine. Rudy Giuliani, New Hampshire radio advertisement, October 2007

Lead Time Bias Gigerenzer, Gaissmaier, Kurz-Milcke, Schwartz, & Woloshin 2007. Psychological Science in the Public Interest.

Collective Statistical Illiteracy II Physicians

Do Physicians Understand 5-Year Survival Rates? Participants: 31 urologists Setting: Continuing education When the (same) information about PSA tests was framed as: Survival rates: 71% recommend screening Mortality rates: 10% recommend screening When asked, what does lead-time-bias mean? 84% did not know (Wegwarth, Gaissmaier & Gigerenzer, 2010) Uninformed decision making appears to be the rule. Costs of PSA mass screening: first year $12 28 billion (US)

Gynecologists understanding of a relative risk reduction Participants: 150 German gynecologists Setting: Continuing education session Mammography screening reduces mortality from breast cancer by about 25%. Assume that 1,000 women age 40 and over participate in mammography screening. How many fewer women are likely to die of breast cancer? 1 [66%] 25 [16%] 100 [ 3%] 250 [15%] Gigerenzer, Gaissmaier, Kurz-Milcke, Schwartz, & Woloshin 2007. Psychological Science in the Public Interest.

Collective Statistical Illiteracy III Patients

PERCEIVED BENEFITS OF MAMMOGRAPHY SCREENING Out of 1000 women 50+ who regularly participate in screening, how many fewer will die of breast cancer in comparison to those who do not participate? evidence Gigerenzer, Mata, & Frank JNCI 2009

What Does the Public Know about the Benefits of Breast and Prostate Cancer Screening? Setting: First Europe-wide representative study with 10,228 face-to-face interviews in Austria, France, Germany, Italy, the Netherlands, Poland, Russia, Spain, and the UK. Key Results: 1. 92% (89%) of women (men) overestimated the cancer-specific mortality reduction by at least one order of magnitude or did not know. 2. In the group of 50-69 year-olds targeted by screening programs, fewer understood the benefit than those not targeted, both men and women. 3. Frequent consulting of physicians or health pamphlets tended to increase rather than reduce overestimation of benefit. Only information provided by health insurance agencies (both public and private) improved understanding. Gigerenzer, Mata & Frank JNCI 2009

Exploiting Collective Statistical Illiteracy

Unwarranted enthusiasm for treatment: Reduction from 2.8 to 1.5 per 100

AAPM 2011 Summit on CT Dose One of the most prestigious cancer centers in the US: M. D. Anderson Confusion about progress against cancer. Unwarranted enthusiasm for medical center.

Mismatched Framing: Report benefits in BIG numbers and harms in SMALL numbers BMJ, JAMA, and The Lancet, 2004-2006: In 1 out of 3 cases was mismatched framing used (mostly relative risks for benefits of treatments, and absolute risks for harms) Sedrakyan & Shih 2007 Medical Care

In late 2009, the GERMAN CANCER AID s pamphlets on breast cancer screening switched to more transparent and complete information presentation Benefits? Mortality Breast cancer mortality up to 30%; 98% survival rate years up to 5/2009 12/2009 NO INFORMATION NO INFORMATION from 4 to 3 in 200 women Harms? False alarms NO INFORMATION 5 of 6 positive women don t have cancer; 1 gets a biopsy Overtreatment NO INFORMATION 1 in 8 women with cancer Radiation-induced cancer barely significant harms smaller than benefits A positive test means: NO INFORMATION 1 in 6 women has cancer

Collective Statistical Illiteracy in Health 1. Few physicians, patients, and politicians understand health statistics. 2. Lack of understanding is largely caused by non-transparent framing of information. The solution is to teach transparent risk communication in medical school and implement it in pamphlets, journals, and advertisements. 3. Since at present neither patients nor physicians have a legal right for transparent and complete information, we need to find other efficient tools, such as the reputation of institutions. 4. A health system that permits incomprehension of risk and evidence among doctors and patients will eventually pay a high price, just as a democracy that does not educate its citizens will. More: Gigerenzer 2002. Calculated Risks. Simon & Schuster. Gigerenzer, Gaissmaier, Kurz-Milcke, Schwartz, & Woloshin 2007. Psychological Science in the Public Interest

Radiation Dose Complex Calculated

AAPM 2011 Summit on CT Dose CP994336-25

What s the dose from an abdominal CT scan? Radiation Absorbed Dose (rad) = Energy (100 ergs) Mass (1 gram)

Dose (Gy) = Exposure (Coul/kg) x Factor (Gy/Coul/kg)

Radiation Dose Complex Calculated Assumptions Uncertainties Rising

Risk Likelihood that someone will get a certain disease in a specific amount of time. The number of chances in 100 that someone will get a disease.

Relative Risk Ratio of two risk estimates Relative Risk of 1 No Association Relative Risk of 2 Twice as Likely

Radiation Risk Topic Google Hits (Millions) Radiation 108 Risk 565 Radiation Risk 13 Sex 594 Cardiology 34 Medical Physics 63 Radiological Physics 2

Radiation Risk Industry Lost Days 20 Cigarettes / day 2370 20% Overweight 985 Mining & Quarrying 328 Construction 302 Agriculture 277 Government 55 340 mrem/yr for 30 yr 49 100 mrem/yr for 70 yr 34 BEIR, NAS

Radiation Risk Biological Injury Biological injury includes deterministic effects (skin burns, cataract formation) stochastic effects (cancer induction, genetic effects) Risk estimates are derived from atomic bomb survivor data, other exposed groups Risk estimates are dependent on organ dose and type, age, gender, reproductive status organ doses depend on patient size

Radiation Risk Stochastic v. Deterministic Probabilities Assumptions Uncertainties Changing

Radiation Risk Outcome with/without Procedure Medical Condition Confounds Situation Very Different for Healthy vs. Sick Must be Evaluated in Medical Context

Radiation Risk Take Home Risk is Complex Be Wary of Dogmatic Statements Given All Else, Radiation Risk is the Least Problem for Cardiology Patients Not Every Cardiovascular Patient needs a Cardiovascular CT