1. Communicating Numbers to Ensure Patient-Provider Partnership Decisions Health numeracy- Communicating evidence to the patient David L. Hahn, M.D., M.S. Director, Wisconsin Research and Education Network (WREN) Department of Family Medicine University of Wisconsin School of Medicine and Public Health DFM Faculty Development 2015

2. Disclosures l I have no conflicts of interest to disclose

3. Objectives l Review concepts and processes of shared decision making (SDM) l Discuss the fundamental importance of quantifiable information to the SDM process, including its uses and abuses. l Present examples from the cancer screening and treatment environment.

4. To clarify l Risk assessment TOOLS l Patient Decision AIDS l Shared decision making PROCESS

5. Medical decision making Then and Now Carling et al. PLoS Medicine 2009

6. Shared decision making (SDM) Process Légaré et al. Cochrane Database of Systematic Reviews 2014 A process by which a healthcare choice is made jointly by the practitioner and the patient, and is said to be the crux of patient- centered care.

7. SDM Process Légaré et al. Cochrane Database of Systematic Reviews 2014

8. AHRQ Approach to SDM http://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/

9. SDM exists within a continuum of patient-doctor relationships l The Paternalism Autonomy spectrum l What is the patient expectation? l Communication approaches may change over time (even within the same visit)

11. McNutt JAMA 2004 Shared decision-making really does not pertain to sharing choices, but rather involves sharing information.

12. McNutt JAMA 2004 … physicians should ensure that that the information used in the patient’s decision-making is reasonable for the individual patient and that the patient understands the ramifications of choice.

13. McNutt JAMA 2004 A choice is made after reflecting on the numeric estimates of benefit and harm. Numbers alone may fall short of being a language for decision making, but are a necessary place to start.

14. Eleven key components of numerical communication l Presenting the chance an event will occur l Presenting changes in numeric outcomes l Outcome estimates for test and screening decisions l Numeric estimates in context and with evaluative labels l Conveying uncertainty l Visual formats Trevena et al. Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. BMC Medical Informatics and Decision Making 2013, 13(Suppl 2) 57 http://www.biomedcentral.com/1472-6947/13/52/57

15. Eleven key components of numerical communication l Tailoring estimates l Formats for understanding outcomes over time l Narrative methods for conveying the chance of an event l Important skills for understanding numerical estimates l Interactive web-based formats Trevena et al. Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. BMC Medical Informatics and Decision Making 2013, 13(Suppl 2) 57 http://www.biomedcentral.com/1472-6947/13/52/57

16. Quantifiable information: Uses and abuses l The WHAT - Patient-oriented v Disease-oriented Outcomes l The HOW - Informative v Persuasive Communication

17. Patient-oriented v Disease-oriented Outcomes l Patient-oriented outcomes –Outcomes that matter to patients and help them live longer and better lives, including reduced morbidity, reduced mortality, symptom improvement, improved quality of life, or reduced cost Strength of Recommendation Taxonomy (SORT) JABFP, JFP, AFP 2004

18. Patient-oriented v Disease-oriented Outcomes l Disease-oriented outcomes –These outcomes include intermediate, histopathologic, physiologic, or surrogate results (e.g., blood sugar, blood pressure, flow rate, coronary plaque thickness) that may or may not reflect improvement in patient outcomes. Strength of Recommendation Taxonomy (SORT) JABFP, JFP, AFP 2004

19. Persuasive v Informative Communication l Persuasive communication –Designed to influence and manipulate l Informative communication –Designed to inform and enhance autonomy Schwartz & Woloshin Eff Clin Pract 2001;4:76-79

20. Which correct statement is more informative? more persuasive? l 1 in 8 women will get breast cancer l In the next 10 years a 40 year old woman has a 2 in 1,000 chance of dying from breast cancer Woloshin et al. JNCI 2008

22. Informative numerical communication Pearls l Use natural frequencies over a defined time period –E.g., “ N per 1,000 over 10 years” l Compare options –E.g., Side-by-side discrete choices

23. Informative numerical communication Pearls l Present all relevant benefits and harms –Using patient-oriented outcomes l Use multiple formats –E.g., Text, Table, Graphic, Video l Frame in both positive and negative formats –E.g., Survival and Death

24. Why multiple formats? l People have different preferences l Descriptions of the anticipated outcomes may influence patient willingness to accept a recommended intervention –Halvorsen et al. Different ways to describe the benefits of risk-reducing treatments. A randomized trial. Annals of Internal Medicine 2007;146:848-856

25. Use with caution: l Numbers needed to treat (NNT) l Numbers needed to harm (NNH) –The are more useful for clinicians than for patients –May be helpful as secondary or illustrative examples

26. Use with extreme caution: l Relative measures (unlinked to baseline) –Percentages, Relative Risks, Odds ratios l Appropriate for testing statistical significance l Pictographs can illustrate the true meaning of relative risk

27. Relative risk: example l A Newspaper Headline reads: “ Azithromycin Doubles the Risk of Sudden Cardiovascular Death ” Ray 2012 New Engl J Med

28. Natural Frequencies: example l From 1 in 20,000 to 1 in 10,000 –1 in 4000 for those at highest heart disease risk –Subsequent studies indicated l No increased risk for the average healthy person Ray 2012 New Engl J Med

29. Provide Sufficient Context l This risk was already known for other macrolides (and some quinolones) l Compare to other common risks –Fatal motor vehicle accidents in 2006 l 1 in 7500 cars l 1 in 1400 motorcycles

30. Examples l Tables l Text l Pictographs

31. Tabular format example Hahn DL. J Fam Pract 2007

32. Some people preferred this tabular format

35. Pictograph formats

36. Adjuvant chemotherapy for breast cancer adjuvantonline.com

37. cbssm.org

38. “ Two simple changes, displaying only risk information related to treatment options that included hormonal therapy...and using pictographs instead of horizontal bars, resulted in significant improvements in both comprehension accuracy and speed of use..... ” cbssm.org

39. Pictograph format example: Mammography

42. One-Page Summary l Express that virtually all interventions have benefits AND risks l Use numbers, not just words, to quantify these l Balance the frame (e.g. survival AND death) l Clear reference class (who does the risk refer to?) l Use natural frequencies and a consistent denominator l Use visual aids l Explore the significance of the risk(s) and benefit(s) to the individual l Share uncertainty Naik G et al. Communicating risk to patients and the public. Br J Gen Pract 2012; 62:213-6

43. Decision Aids - Where can I find them? l Informed Medical Decisions Foundation (IMDF) –http://informedmedicaldecisions.org/shared-decision- making-in-practice/decision-aids/ l Ottawa Hospital Research Institute (OHRI) –http://decisionaid.ohri.ca/index.html l Development Toolkit l Decision Aid Library and Standards –International Decision Aids Standards (IPDAS) Collaboration l Implementation Toolkit l Online Tutorial

44. Questions?