1. Consumer-Purchaser Disclosure Project Shared Decision-Making Discussion Forum Lyn Paget July 1, 2009

2. Overview of Presentation Brief history of Foundation Patient Decision Aids & Shared Decision Making Research/Demonstrations Policy/Legislation

3. Intellectual Roots Variation Research Decision-making science & quality Social science Clinical expertise

4. Concept for the Foundation Decrease unwarranted variation & increase decision quality by changing the standard of care to one where patients are informed & involved in medical decision making.

5. Simply put… Assure that people understand their choices and have the information they need to make sound medical decisions.

6. Foundation Patient decision aids Research – Practical challenges of engaging patients – Theoretical basis of decision support & medical decision making – Decision quality Clinical practice demonstrations Advance policy

7. Develop Patient Decision Aids

8. Decision Aid Development Literature review and synthesis Patient and provider focus groups Organize content (framing, key clinical insights, data) Recruit patients and providers for interviews Collaborate with Health Dialog to develop a ‘rough cut’ for evaluation

9. Evaluation What: – Clinical accuracy, balance, acceptability, knowledge How: – Patients (20 - 30) who have condition or have made decision – Medical Editor and Clinical Advisors – Foundation and Health Dialog staff – Reviewers (not involved previously) Final program reflects evaluation input.

10. Review and Updates Every 6 months – Medical Editor reviews DVD and booklet – Clinical accuracy Every 2 years – Medical Editor, Clinical Advisors, Reviewers – Focus groups, 20 to 30 patients – Clinical accuracy + relevance/acceptability + knowledge (patients) Programs revised as needed.

11. Distribution Health Dialog (health coaching model) Research sites (provider models)

12. Do they work? Cochrane Collaborative

13. They consistently choose less treatment & testing – Bypass surgery – Hormone replacement therapy – PSA testing – Breast cancer treatment – Prostate surgery When patients are informed

14. 70% of patients set more realistic expectations Less decisional conflict exists Better match between choices and values 50% move from undecided to decided Patients are 40% less passive in decision making When patients see DAs

15. The role of decision aids in shared decision-making Clinical Demonstrations

16. Demonstration Site Goals Learn how DAs & SDM can be effectively deployed in clinical settings Promote system changes which encourage broad uptake of SDM Expand knowledge to facilitate integration of DAs & SDM

17. Demonstration Sites SitePrimary CareSpecialty CareNon-Funded Dartmouth Hitchcock Medical CenterX White River Junction VAX University of North CarolinaX University of San DiegoX University of Los AngelesX Mass General HospitalX MaineHealthX Mercy IncX StillwaterX Oregon Health Science UniversityX Palo Alto Medical FoundationX Allegheny General Hospital – Breast CenterX University of California San Francisco – Breast Center X DHMC – Breast CenterX DHMC – UrologyX Partners Health CareX ElyriaX Priority HealthX

18. Implementation Tactics Provider engagement Patient identification Program distribution – Timing – Channels Program viewing Closing the loop

19. What are we learning?

20. Value Enhanced Provider endorsement Supportive infrastructure Measures of decision quality Integration in clinical pathways

21. How do we reach the tipping point?

22. Policy & Reform to Advance a New Standard

23. Legislation States Explore Shared Decision Making Bridget M. Kuehn JAMA. 2009;301(24):2539-2541.

24. Reforming States Group Shared Decision-Making Seminars 4 Seminars for 160 + participants 46 states represented

26. Common Elements Platform for pilot projects Clear economic incentives Preference-sensitive conditions Certification/quality standards Professional training Evaluation

27. Quality Standards Certification – Decision support materials – Shared decision-making process IPDAS work – International Patient Decision Aids Standards – 14 countries represented

28. Thank You! lpaget@fimdm.org 617-367-2000 x243