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Consumer-Purchaser Disclosure Project Shared Decision-Making Discussion Forum Lyn Paget July 1, 2009 Overview of Presentation • Brief history of Foundation • Patient Decision Aids & Shared Decision Making • Research/Demonstrations • Policy/Legislation Intellectual Roots • Variation Research • Decision-making science & quality • Social science • Clinical expertise 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. Simply put… Assure that people understand their choices and have the information they need to make sound medical decisions. 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 Develop Patient Decision Aids 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 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. 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. Distribution • Health Dialog (health coaching model) • Research sites (provider models) Do they work? Cochrane Collaborative When patients are informed • They consistently choose less treatment & testing – Bypass surgery – Hormone replacement therapy – PSA testing – Breast cancer treatment – Prostate surgery When patients see DAs • 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 The role of decision aids in shared decision-making Clinical Demonstrations 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 Demonstration Sites Site Primary Care Dartmouth Hitchcock Medical Center X White River Junction VA X University of North Carolina X University of San Diego X University of Los Angeles X Mass General Hospital X MaineHealth X Mercy Inc X Stillwater X Oregon Health Science University X Palo Alto Medical Foundation X Specialty Care Allegheny General Hospital – Breast Center X University of California San Francisco – Breast Center X DHMC – Breast Center X DHMC – Urology X Non-Funded Partners Health Care X Elyria X Priority Health X Implementation Tactics • Provider engagement • Patient identification • Program distribution – Timing – Channels • Program viewing • Closing the loop What are we learning? Value Enhanced • • • • Provider endorsement Supportive infrastructure Measures of decision quality Integration in clinical pathways How do we reach the tipping point? Policy & Reform to Advance a New Standard Legislation States Explore Shared Decision Making Bridget M. Kuehn JAMA. 2009;301(24):2539-2541. Reforming States Group Shared Decision-Making Seminars 4 Seminars for 160+ participants 46 states represented Common Elements • • • • • • Platform for pilot projects Clear economic incentives Preference-sensitive conditions Certification/quality standards Professional training Evaluation Quality Standards • Certification – Decision support materials – Shared decision-making process • IPDAS work – International Patient Decision Aids Standards – 14 countries represented Thank You! [email protected] 617-367-2000 x243