Patients and Families: Essential Partners in Achieving Exceptional Quality and Patient Safety

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4. Patients and Families: Essential Partners in Achieving Exceptional Quality and Patient Safety Jim Conway Senior Vice President, IHI jconway@ihi.org

5. With Enormous Appreciation � ` 5

6. In dedication to� Patient and family-centered-care visionaries who show me the way Patients, families and patient safety advocates: their faces, voices, stories, courage and work fuel our journey

7. Visionaries 7

8. IN THEIR NAME 8

9. Outline Exceptional Care and Caring Patient and Family-Centered Care Defined Learning from a Personal Journey Designing PFCC into Care: An IHI R&D Effort Creating an Exceptional Experience for the Hospitalized Patient Business Case: Patient & Family-Centered Care �Why So Slow?� The Time Is Now 9

10. Exceptional Care and Caring 10

11. Patient and Family-Centered Care Defined �Nothing about me, without me.�

12. Picker Dimensions Respect for patient values, preferences Coordination and integration Information, communication, education Physical comfort Emotional support Involvement of family and friends Transition and continuity Access to care 12

13. Four Key Concepts of PFCC Dignity and respect: Providers listen and honor patient and family perspectives and choices. Information sharing: Providers share complete and unbiased information in ways that are affirming and useful. Participation: In care and decision-making Collaboration: In policy and program development, implementation and evaluation, as well as the delivery of care 13

14. Learning From aPersonal Journey Children�s Hospital, Boston Dana-Farber Cancer Institute National and International Efforts

15. It began with neither a great light nor a book nor a dream � 15

16. Children�s Hospital, Boston Pushing, experimenting, partnering Painting bunnies on the door �I don�t care who you are �� Renovating waiting rooms; explaining waits Designing hospitals Informing policies and practices Building a family resource center 16

17. Dana-Farber Cancer Institute, Boston Pediatric experience Where is the patient and family in adult care? How do we really know what patients want? Responding to/learning from a sentinel event How do we listen to patients when they feel there is a problem? Longwood Integration of Dana-Farber/ Brigham & Women�s Cancer Care You are changing the system that keeps me alive. This cannot happen! How do you know this change is an improvement? 17

18. Patient and Family-Centered CareDana-Farber Cancer Institute Mainstreamed patient and family-centered-care model Adult and Pediatric Patient and Family Advisory Committees (12+ years and 10+ years) Patient and family participation in operating committees, as well as in all design, measurement, assessment and improvement efforts 18

19. Overarching Structures and Processes Committees: Board Quality Patient Safety Strategic Planning Operating Patient Education Disease Centers Side by Side Resource Centers NPSF & IHI meetings 19

20. DFBWCC and DFCHCCPatients & Families in Partnership Facility Planning Patient Care Rounds Patient Educator Program Joint Commission Code Participation Staff Orientation Leadership Interviews Complementary Therapy Task Force Working on the Wait Emergency Admits Policy Review Safety Rounds & Research Disclosure 20

21. What�s Getting Rewarded Around Here! 21

22. Learning from National and International Efforts 22

23. Publicly Verifiable PFCCExamples of Current Practice Mission, Vision, Values Leadership, Operations Advisors Quality Improvement and Patient Safety Personnel Environment and Design Information and Education Charting and Documentation Patterns of Care and Support Experience of Care 23

24. Key Learning:What Do Patients And Families Bring? Their knowledge of the illness Parents of a child The chronically ill adult The actual experience of care Failures in handoffs, slips, harm What works for them and what doesn�t Another set of eyes, brain, voice Checking the chemo, calling the rapid response team Writing in the record, participating in rounds This doesn�t look right A passion to achieve the same goals we want It�s about them 24

25. Key Learning: For All of Us We don�t know what happens daily in our hospitals. We don�t know what patients and family members want and need�we don�t see through their eyes. Patients know the hand-off better than we ever will. Patients, families and staff have many common goals and can achieve dramatic improvements. These are patients, going through extraordinary ordeals. Errors don�t erode trust. The way we act can. Patients want to give back, be involved, contribute to success. They are vested. 25

26. Designing PFCC into All Care: Creating an Exceptional Experience for the Hospitalized Patient What can we do in the hospital for every patient?

27. �Every system is perfectly designed to achieve exactly the results it gets.� Paul Batalden

28. Primary and Secondary Drivers Exceptional Patient Experience Exceptional patient and family inpatient hospital experience (safe, effective, patient-centered, timely, efficient, equitable) as measured by HCAHPS willingness to recommend 28

29. Primary Drivers Governance and executive leaders demonstrate that NOTHING is more important in the culture than patient- and family-centered care practiced everywhere in the hospital. The hearts and minds of staff and providers are fully engaged. Every care interaction is anchored in a respectful partnership anticipating and responding to patient and family needs (physical comfort, emotional, informational, cultural, spiritual and learning). Hospital systems deliver reliable quality care 24/7. The care team instills confidence by providing collaborative, evidenced-based care. 29

30. Leadership Governance and executive leaders demonstrate that NOTHING is more important in the culture than patient- and family-centered care practiced everywhere in the hospital (individual, microsystem, organization) In words and actions, leaders communicate that the patient�s safety and well-being is the critical decision guiding all decision- making. Patients and families are treated as partners in care at every level�institution-wide to individual care. PFCC is publicly verifiable, rewarded and celebrated. Sufficient staff are available with the tools and skills to deliver the care the patients need when they need it. There is relentless focus on measurement, learning and improvement with transparent patient feedback at all levels. 30

31. Hearts and Minds The hearts and minds of staff and providers are fully engaged Staff are recruited for values and talent, supported for success and held accountable individually and collectively for results. Compassionate communication is an essential competency. Delivery of exceptional patient- and family- centered care is recognized, communicated and celebrated 31

32. Respectful Care Partnership Every care interaction is anchored in a respectful partnership anticipating and responding to patient and family needs (physical comfort, emotional, informational, cultural, spiritual and learning) Patients and families see themselves as part of care team and participate at the level the patient chooses. Care for each patient is based on a customized interdisciplinary shared care plan with patients educated, enabled and confident to carry out their care plans. Communication uses words and phrases that the patient understands. 32

33. Reliable Care Hospital systems deliver reliable quality care 24/7 The physical environment supports care and healing. Patients are able to access care and say that there were not long and unreasonable waits and delays. Patients say that there were staff available to give the care I needed. 33

34. Confidence The care team instills confidence by providing collaborative, evidenced-based care Care is safe and concerns are addressed, and if things go wrong, there is open communication and apology. Care is coordinated and integrated, and patients don�t feel their care fell through the cracks in transitions. Everyone on the patient�s care team, including the patient, has the information they need. 34

35. Did we get it right for the hospitalized patient? What did we miss? jconway@ihi.org 35

36. Business Case: Patient- and Family-Centered Care �Nice but not necessary�

37. Patient experience is strongly correlated with other key outcomes. Health Outcomes: Patient adherence Process of care measures Clinical outcomes Business Outcomes: Patient loyalty Malpractice risk reduction Employee satisfaction Financial performance 37

38. Financial benefits of patient- centered care in Planetree Reduced length of stay Lower cost per case Decreased adverse events Higher employee retention rates Reduced operating costs Decreased malpractice claims Increased market share 38

39. Performance Model Overview Hospitals submit data for all VBP measures that apply. CMS determines each hospital�s performance score on each measure: higher of 0 - 10 points on attainment or improvement. For each hospital, CMS aggregates scores across all measures within a domain (e.g., clinical process-of-care measures, HCAHPS). CMS weights and combines each hospital�s domain scores to determine the hospital�s Total Performance Score. CMS translates each hospital�s Total Performance Score into an incentive payment using an exchange function.

40. �Why So Slow?�

41. So, Why Don�t We Do!We�re Just Making Modest Progress Public isn�t demanding it, YET. Most efforts are site-specific and unconnected. Providers believe they know what patients need. Belief the hospital/clinic is the center for healthcare vs. the bedroom, bathroom, hospital bed in the dining room We don�t know how to share in care. It�s hard; IT�S VERY HARD. �It�s not what�s rewarded around here.� � 41

42. The Time Is Now If health and/or healthcare is on the table, then the consumer (public, patient, family member) must be at the table, every table. NOW!

43. Extensive Resources Selected Websites Picker Institute www.pickerinstitute.org IHI www.ihi.org Patient Centered Care Institute for Family Centered Care www.familycenteredcare.org Planetree www.planetree.org Coming Monday, Oct. 27, 2008 Picker and Planetree Websites

44. It Will Take Leadership at Every Level Not an �if� but a when and how discussion. It�s a system to be designed and achieved. It�s a gift to be given. It�s a right to be realized. 44

45. IN THEIR NAME 45

46. And For All of Us, Our Family, Our Friends, Our Communities 46

47. "Do not go where the path may lead; go instead where there is no path and leave a trail.� Ralph Waldo Emerson