1. Creating a healthcare system to FIT the patient – Patient-centered translation of evidence into practice Nilay Shah Division of Health Care Policy and Research And Knowledge and Evaluation Research (KER) Unit Mayo Clinic

2. Disclosures Funding provided by: – AHRQ: R18 HS019214; R18 HS018339 – NIDDK: R34 DK84009 – Foundation for Informed Medical Decision Making (FIMDM) – American Diabetes Association (ADA) – Mayo Clinic Foundation for Medical Education and Research – Mayo Clinic CTSA

3. EBM KT Glasziou and Haynes ACP JC 2005

7. A survey of 627 US primary care clinicians Sirovich BE et al. Arch Intern Med 2011 50% of my patients get too much care 50% of primary care docs are too aggressive 60% of specialists are too aggressive 35% practice much more aggressively than what they would like

8. Treatment of Low Grade Prostate Cancer

9. Rates of Mammography Screening Among Younger Women

11. Key problem: Do not follow advice Poor health despite cost and side effects Complicated patient-clinician relationship Wasted or misallocated healthcare resources: US$ 290b (100b in avoidable hospitalizations) Cutler and Everett NEJM 2010 10.1056/NEJMp1002305

12. Encounter Research NEED WANT CAN APPROPRIATE DESIRABLE FEASIBLE

13. Cumulative complexity model Shippee et al 2011 Workload Capacity access use self-care Outcomes Burden of treatment Burden of illness

14. The work of being a chronic patient Self-reported 48 min / day incomplete “not enough time” Desirable (ADA) 122 minutes/day + admin 143 minutes/day Russell LB et al. JFP 2005; 54: 52-56

15. Superusers Are heavier* users of visits, lab tests, imaging, pharmacy visits, number of medications 3 conditions: 2x 4 conditions: 4x 5+ conditions: 9x vs. patients with diabetes and 1-2 conditions, adjusted by sex and age, in commercially insured patients * top 25% Shippee et al. In preparation

16. Imagine…. 62-year old woman…. Diabetes: Metformin 2x/day, SU 1x/day Hypertension: Diuretic and ACE-I 1/day Hypercholesterolemia: statin 1/day Osteoporosis: Bisphosphonate 1/week Chronic pain: NSAID 2x/day; narcotics as needed Asthma: oral leukotriene 1x/day OTC: Aspirin 1x/day Other health care requirements: testing and screening; specialists Caregiver... 16

17. Minimally disruptive healthcare Health care delivery designed to reduce the burden of treatment on patients while pursuing patient goals May CR, Montori VM, Mair FS. BMJ 2009; 339:b2803 Want NeedCan

18. The work of being a chronic patient Sense-making workOrganizing work and enrolling others Doing the work Reflection, monitoring, appraisal

19. Minimally disruptive healthcare Burden of treatment Coordination of care Comorbidity in clinical evidence and guidelines Prioritize from the patient’s perspective

21. Encounter Research

22. Evidence synthesis Observations clinical encounter Designers Study team Patients advisory groups Clinicians Initial prototype Field testing Modified prototype Final Decision aid Evaluation

23. Diabetes Cards Nature of diabetes medication discussions Summarizing the research evidence Iterative process – Choice Architecture

24. “Baseball Cards”

25. “Narrative Cards”

27. More helpful Improved knowledge Increased patient involvement No difference in adherence (perfect adherence in control gr) No significant impact on HbA1c levels Mullan RJ et al. Archives of Internal Medicine 2009

28. Final Iteration: Issue CardsIssue Cards

30. Risk-Treatment Paradox Ko, Mamdani and Alter JAMA 2004

33. Improved Knowledge Risk estimation Comfort with the decision Total trust Action (70% fewer Rx in low risk patients) Short-term adherence Weymiller et al. Arch Intern Med 2007

37. Adherence after Initiating Bisphosphonates Source: Rabenda et. al Osteoporosis 2008

38. Association Between Adherence and Risk of Fracture

39. >75% MDs found helpful + 1 min to consultation time Improved knowledge & risk estimate No change in comfort or trust Increased patient involvement Montori VM et al. Am J Med 2011 Osteoporosis Choice

40. Decision to Start Bisphosphonate

42. Recommended “Medication Bundle” after an AMI Shah ND, et al. Am J Med 2009

43. Structural Intervention Remove copay on recommended medications Choudhry N et. al. NEJM 2011

44. Knowledge Transfer 4-5 min to consultation time Improved knowledge & risk estimate No change in comfort or trust High-levels of patient involvement Increased satisfaction

45. Knowledge of Risks and Benefits

46. Adherence to Medications

47. A Case Study A 63 y.o. woman presents to the ED with pain in the neck going to her left arm. Intermittent sharp twinges of pain in her chest. No ischemic changes on ECG; serial cardiac troponins were negative PMH: Hypertension, Migraines, Breast cancer Former smoker What would you want to do if you were her?

48. Hospital or ED Observation Unit Admission

49. Hess et. al Circ CQO 2012

50. Summary of Findings: Chest Pain Choice Improved knowledge Comfort with the decision Greater level of engagement High levels of satisfaction

51. Management Decisions

53. Evidence Synthesis

54. The Depression Choice Decision Aid

57. Experience WorkSettingEvaluation Statin ChoicePrimary + specialty care Feasible, effective, implemented in EHR, web-based, multicenter trial DM2 Med ChoicePrimary careFeasible, effective, multicenter trial, web-based Aspirin ChoicePrimary care (group)Not evaluated Depression ChoicePrimary careOngoing trial Genomic ChoiceExperimentalDesign phase Osteoporosis ChoicePrimary careFeasible, effective, EHR ICD ChoiceSpecialty careDesign phase Smoking choicePrimary careDesign phase Chest Pain ChoiceEmergencyFeasible, effective, multicenter trial AMI ChoiceHospital wardFeasible, effective, multicenter trial Hypertensione-primary careDesign phase RosiglitazoneGeneralNot evaluated Prostate cancer screening and early treatment General (tablet)Design phase PCI vs. medical therapySpecialty careOngoing Trial Mammography < 40Primary careDesign phase Menopause symptomsPrimary careDesign phase

58. Our work Since 2005. 200+ clinicians 50+ sites 1000+ patients Patient and Family councils = key role Funding: Mayo, AHRQ, NIH, benefactors, and foundations. No for-profit funding.

59. Summary of experience Age: 40-92 (avg 65) Primary care, ED, hospital, specialty care 74-90% clinicians want to use tool again Adds 2.5-3.8 minutes to consultation 60% fidelity 20% improvement in knowledge 17% improvement in patient involvement Variable clinical outcomes

60. Implementation

61. Statin Decision Aid

63. Lessons learnt User-centered design happens in the field, takes multiple iterations and expertise Challenges with evidence synthesis and changing evidence Testing decision aids in usual clinical settings is tough: decision moments are unpredictable Repeated use for chronic decisions has been difficult to study in efficacy trials

64. Lessons learnt Decision aids have increased knowledge and patient involvement in the decision consistently The impact on improving adherence to medications is mixed Clinicians and patients have reported high-levels of satisfaction (in trial settings); however culture is important

65. Work in progress Better understanding of the level of evidence necessary to embed into practice Challenges of broad implementation into routine practice and repeated use Right place and time to engage patients with chronic conditions Much broader work around designing a minimally disruptive system

66. 7 th International Shared Decision Making Conference Lima, Perú - June 16-19 2013 www.isdm2013.org

67. http://shareddecisions.mayoclinic.org shah.nilay@mayo.edu