Presentation given at the Foundation's January 26, 2011 Research and Policy Forum by Jack Fowler, PhD, senior scientific advisor for the Foundation

1. Informed & Shared Decision Making is for Everyone Jack Fowler, PhD Senior Scientific Advisor

2. Two Most Cited Reasons that All Decisions Are Not Shared Providers can’t or won’t do it Many patients don’t want to be informed and share in decisions, or they are unable to

3. Testing Our First 30-Minute BPH Program How would you rate the amount of information?

4. Testing Our First 30-Minute BPH Program How would you rate the amount of information?

5. Testing Our First 30-Minute BPH Program How would you rate the amount of information?

6. One Universal Truth Every time we ask, people (particularly physicians) underestimate how much patients value getting information about their medical conditions and being involved in decisions.

7. Actual Length of DVD & Patients’ Rating of Length minutes minutes minutes n=1847 n=720 n=826 Dartmouth patient data collected between July 2005 and July 2009

8. And these groups are specifically labeled Least Able and Least Interested? Those with low literacy or numeracy Those with less formal education Those 65 or older

9. Do groups like that need special help with information? Definitely! Whenever baseline knowledge is measured, it almost always documents that those groups are less informed than average

10. DECISIONS Survey Data National sample of 3000+ adults 40 or older about 9 different medical decisions Each respondent who had faced a decision was asked 4-5 knowledge questions relevant to that decision

11. Mean Knowledge Score by Education Percent Correct N=4935

12. Mean Knowledge Score by Age Percent Correct N=4946

13. Do Decision Aids Help People Who Begin with Less Knowledge? The most common result of studies is that good decision aids help those with less knowledge as much as those who know more.

14. At Least 3 Studies Suggest the Less Educated May Distinctively Benefit That is, that good decision support can close the gap between those who start out with more and less knowledge.

15. Makoul et al. Compared Video & Print Materials Almost half the sample tested as having marginal or inadequate literacy For most comparisons, they found low and higher literacy benefitted from the materials, but differences in knowledge persisted

16. Mean Asthma Knowledge Scoresby Literacy Level Percent Correct

17. Mean Asthma Knowledge Scoresby Literacy Level Percent Correct

18. Mean Asthma Knowledge Scoresby Literacy Level Percent Correct

19. Mean Asthma Knowledge Scoresby Literacy Level Percent Correct

20. For Information on Colon Cancer Screening Those with lower literacy benefitted distinctively from the audio-visual (that is, their knowledge increased more compared to those given the same info in print form) This is an example of how high-quality information may be particularly valuable for those with fewer skills

21. Mean CRC Screening Knowledge Scoresby Literacy Level Percent Correct

22. Mean CRC Screening Knowledge Scoresby Literacy Level Percent Correct

23. Eckman Studied Effects of Decision Aid on Managing Heart Disease Compared knowledge before and after audio-visual program Analysis compared responses of patients with high and low health literacy levels

24. Mean Cardiac Knowledge Scoresby Health Literacy Level Percent Correct n=68 n=101

25. Knowledge Changed, But What About Behavior? Higher Health Literacy Lower Health Literacy Body Weight? 1.7% 2.8% # of Smokers? 27% 21% Daily Cigarettes? 23% 46% Note: Percent of change from Pre-Intervention to Final Follow-up

26. Understanding Risks Galesic et al. studied different ways ofcommunicating risk: Statement of relative risk reduction (“Reduces risk by 13%”) Statement of absolute risk reduction (“8% have stroke without aspirin; 7% with aspirin”) Add 100-person charts to Statement 2

27. Understanding Risks Add 100-person charts to Statement 2 (“8% have stroke without aspirin; 7% with aspirin”) Without Aspirin With Aspirin ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ●●●●●●●●○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ○○○○○○○○○○ ●●●●●●●○○○

28. Findings Absolute risk statement produced much better understanding of risks than relative risk reduction statement The icons added considerably to understanding over just the statement

29. Findings with Respect to Literacy Compared understanding of risk reduction for samples of college students and senior citizens recruited from community centers Both groups were stratified by score on a numeracy test

30. Percent of Respondents Who UnderstoodRisk Reduction by Numeracy Level and Quality of Data Presentation

31. Percent of Respondents Who UnderstoodRisk Reduction by Numeracy Level and Quality of Data Presentation

32. What About Interest in Sharing Decisions? Various surveys have asked questions about interest in sharing, and the results depend heavily on how the question is asked. The best evidence comes from patients who have actually experienced decision aids and shared decision making.

33. At Dartmouth-Hitchcock Patients routinely see decision aids for at least 11 different decisions They are surveyed after the see them

34. Results for Those Aged 65+ Asked who should make the decision: Mainly the doctor Shared equally Mainly the patient

35. Who Should Make Decisions? n=1418 n=713 Dartmouth patient data collected between July 2005 and July 2009

36. Would patients recommend decision aids to others? Definitely Probably Probably not Definitely not

37. Would You Recommend DA for Others? n=1374 n=687 Dartmouth patient data collected between July 2005 and July 2009

38. We Have Looked Since 1989 We have never seen evidence that older or less educated people push back against shared decision making when they are given encouragement and decision support.

39. Like the Galesic Study We find that well-designed decision aids are helpful to everyone The tools that are not helpful to the less literate tend not to be particularly helpful to anyone

40. Of Course, There Are Challenges The less information a person has to start, the more important it is to have good, clear decision aids We believe that multi-media programs, with pictures and voice support, are particularly good And they may well need extra, personalized decision support to get them where they need to be to form an informed opinion

41. We Think the Bottom Line is Clear Those with less education and literacy skill are the most in need of decision aids and decision support They have the most to gain When they are given good tools, they do learn When they are encouraged and supported, most of them embrace the chance to help make decisions

42. THANK YOU!