1. Patient Engagement in Design, Delivery, & Discovery 8 th Annual Utah Health Services Research Conference February 25, 2013 Lucy A. Savitz, Ph.D., MBA Director, Research and Education Institute for Healthcare Delivery Research Intermountain Healthcare Research Professor, Epidemiology Division, Internal Medicine Director, Community Engagement Core, CCTS University of Utah

2. Susan Dentzer,, Editor-in-Chief, Health Affairs, 32(2): 202. The blockbuster drug of the century revealed in this issue!

3. The drug is actually a concept…

4. Patient activation & engagement

5. Many ways to define the concept… Patient engagement: actions that people take for their health and to benefit from care (IHI) Patient activation: understanding ones own role in the care process and having the knowledge, skills, and confidence to take on that role (Hibbard et al.)

6. Shared Decision Making Intended to improve patient knowledge & involvement in decision-making to promote an informed, value-based choice among 2 or more medically reasonable altern atives (OConnor et al.)

7. Patient Engagement in Knowledge & Involvement about Care Shared Patient Decision ActivationMaking |______________________________| Savitz, LA

8. Holistic View of Patient Engagement More holistic definitions broaden the concept further to encompass care delivery, design & research/discovery Patients as partners – Personal responsibility & self-management – Quality improvement (< 1/3 patients involved patient-centered medical home QI) – Care design (e.g., mobile apps) – Governance

9. Carman, Dardess, Maurer, Sofaer, Adams, Bechtel, Sweeney, page 225

10. CMMI & Hospital Engagement Network Assessment of Engagement 1.Prior to admission, hospital staff provides and discusses a discharge planning checklist with every patient that has a scheduled admission, allowing questions or comments from the patient or family. 2.Hospitals conduct both shift change huddles for staff & do bedside reporting with patients & family members in all feasible cases. 3.Hospital has a dedicated person or functional area that is proactively responsible for Patient and Family Engagement and systematically evaluates engagement activities. 4.Hospital has an active Patient and Family Engagement Committee OR at least one former patient that serves on a patient safety or quality improvement committee or team. 5.Hospital has one or more patient(s) who serve on a Governing and/or Leadership Board serving as a patient representative.

11. Provisional Results, Intermountain-led HEN 2-13

12. Patient engagement is one strategy to achieve the "triple aim A growing body of evidence demonstrates that patients who are more actively involved in their health care experience – better health outcomes – Improved satisfaction – lower cost

13. What Will It Take to Move from Here to There: Design, Delivery, or Discovery Need for training – Physicians – Clinical and non-clinical staff – Patients, families, caregivers It takes a team-based approach Culture change – Common language – Viewing patients/caregivers as partners Evidence that engagement makes a difference

14. Some HSR Challenges Engagement as a new approach to research Limited/lacking tools to capture engagement More research needed to understand: – How engagement leads to improved outcomes – Where engagement is best placed (setting, timing) – What should be offered nudging vs. balanced, nondirective decision aids – Ways to engage all patients (literacy) – Ethical implications of engagement abandonment or penalties for non-adherent patients

15. Patient Centered Outcomes Research Institute (PCORI) www.pcori.org ACA mandates that PCORI seek meaningful ways to integrate the patients voice into the research process – Generate topics for research – Help to prioritize topics – Select topics for funding – Ensure patient involvement in design

16. Local Resources Community Engagement Core of the Center for Clinical and Translation Services (CCTS) Patient Centered Outcomes /Comparative Effectiveness Research Certificate Program Patient Centered Outcomes Research Class, University of Utah School of Medicine, offered First Summer Session Annually