Issues and Challenges in the Era of Shared Decision-making: Explaining Risk and Uncertainty

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1 Issues and Challenges in the Era of Shared Decision-making: Explaining Risk and Uncertainty A lifetime cancer risk of 5% Jessica S Ancker, MPH, PhD Assistant Professor Weill Cornell Medical College A talk for the 10% 8% 6% 4% 2% 0%

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3 probability of disease family history appearance options 3

4 Shared (informed) decision-making Has gathered relevant information for decision Understands the risks Understands the options Has weighed values Has engaged in decision-making at level desired USPTF 2004 ISPDAS.ohri.ca 4

5 Risk is different from uncertainty Economic risk: probability x utility 1% risk of > 1% risk of Uncertainty: Risk may exist but magnitude is unclear Long-term safety profile of new drug Variant of unknown significance in BRCA Confidence intervals 5

6 Risk communication for shared or informed decision-making Patient communicates personal utilities/values Professional communicates (epidemiologic) risks 6

7 Risk communication for shared decision making is very different from public health risk communication Persuasive communications Informed decisions Methods such as framing and fear appeals are used to promote desired behavior Quantitative and non-quantitative can be effective Methods such as graphics and text are used to promote understanding Strong emphasis on quantitative 7

8 Low numeracy is a particularly challenging issue for shared decision making Difficulty extracting affective meaning Strong framing and formatting effects Higher perceived risk Interpretation Comparison Estimation Computation Ancker and Kaufman

9 Understanding and risk perception do not depend solely on the patient s skills Patient brings skills, knowledge, perceptions Information for your health Information provider brings communication skills Documents and websites bring information design Ancker and Kaufman

10 Risks can be explained in: Words: Side effects are not common Numbers: There is a 2% risk of side effects 23 in 100 women like you develop diabetes Graphics: 10% 8% 6% 4% 2% 0% Your risk Average risk 9% 10% 23% 58% Risk level Your risk Average risk 10

11 Risks can be explained in: Words: Side effects are not common You are at high risk of diabetes Your family history suggests a small risk of heart disease Advantages Familiar Conveygist Preferred by less numerate Disadvantages Lack specificity Lead to overestimates of risk Difficult to use for comparisons Is a very small risk better or worse than a rare risk? Berry 2002, 2003 Reyna 2008 Gurmankin 2005 Zikmund-Fisher

12 Risks can be explained in: Numbers (percentages): There is a 2% risk of side effects Advantages Familiar Independent of sample size Disadvantages Perceived as abstract Difficult to manipulate If my risk of cancer was 9%, and this reduces it by 30%, then my risk is...? Peters 2006, 2011 Hoffrage 2000 Gigerenzer 2008 Schwartz and Woloshin 1997 Ancker, Chan, Kukafka

13 Risks can be explained in: Numbers (frequencies): 23 in 100 women like you develop diabetes Advantages Perceived as vivid, personal Disadvantages Inflaterisk among less numerate Denominator neglect Denominator confusion 23 in 100 people? = 230 in 1000 people Is 1 in 5000 bigger or smaller than 1 in 20,000? (...by how much?) Peters 2011, 2012 Denes-Raj 1995 Grimes

14 Risks can be explained in: Graphics: 10% 8% 6% 4% 2% 0% Your risk Average risk 9% 10% 23% Risk level Your risk 58% Average risk Ancker and Kaufman systematic review 2006 Lipkus and Hollands

15 Graphics exploit quick automatic perception and learned skills learned 10% automated What is this thing? 5% 0% Which bar is taller? How much taller? Galesic 2011

16 Judgment is affected by whether part-to-whole relationship is visible 10% 8% 6% 4% 2% 0% 100% 75% 50% 25% 0% 100% 75% 50% 25% 0% Your risk Average risk Ancker and Kaufman systematic review 2006 Cleveland

17 Judgment is most accurate when part-to-whole relationship is easily visible Ancker and Kaufman systematic review 2006 Ancker et al 2009,

18 Judgment is most accurate when only one dimension varies 100% 75% 50% 25% 0% Heart disease Cancer Cleveland

19 Specific graph types: Icons Clear visual analogy with risk information Exploits ability to visually process sizes Less learned information Well-accepted Part-to-whole principle applies 19

20 Specific graph types: Bar charts Exploits ability to visually process sizes Relies somewhat more on learned skills May appear more abstract May appear simpler Familiar Part-to-whole principle applies 10% 8% 6% 4% 2% 0% 75% 90% 25% Without treatment 10% With treatment 20

21 Specific graph types: Risk ladders Fairly familiar visual analogy Permits comparative and/or action threshold information Can be quantitative or semi-quantitative May appear more abstract Your risk Average risk Risk level 0%.001%.01%.1% 1.% no chance 0 in 100 0% 50 in % certain 100 in % Lee and Mehta 2003 Woloshin, Schwartz et al

22 Which graphics do patients prefer? Graphics can improve satisfaction with information without changing decisions (e.g., Armstrong 2005) Patients often prefer visually simple graphics to complex ones (Royak- Shaler 2004) Patients do not answer comprehension questions better with graphic type they prefer (Feldman-Stewart 2000) Neither do doctors (Elting 1999)

23 Every risk communication method has strengths and weaknesses Words: Numbers: Side effects are not common There is a 2% risk of side effects 23 in 100 women like you develop diabetes Your risk drops from 4 in 20,000 to 1 in 20,000 Your risk drops from 0.020% to 0.005% Graphics: 10% 8% 6% 4% 2% 0% Your risk Average risk 9% 10% 23% 58% Risk level Your risk Average risk 23

24 Issues and Challenges in the Era of Shared Decision-making: Explaining Risk and Uncertainty Would novel communication modalities improve comprehension... or merely overload patients? Ancker et al 2011 Zikmund-Fisher et al

25 Issues and Challenges in the Era of Shared Decision-making: Explaining Risk and Uncertainty HITEC Act of 2009 Unprecedented rise in use of electronic health records Requirement to provide patients with direct access to their electronic medical data Ancker, Calman et al 2011 Ancker, Kaushal et al 2013

26 Issues and Challenges in the Era of Shared Decision-making: Explaining Risk and Uncertainty Would novel communication modalities improve comprehension... or merely overload patients? How do patients understand quantitative data in their medical records? How does access to medical records affect shared decision making and risk perceptions? Jessica S Ancker, MPH, PhD jsa7002@med.cornell.edu 10% 8% 6% 4% 2% 0% 26