Patient Engagement: The New Blockbuster Drug

1. 11 June to 12 June, 2013 Glasgow Maureen Bisognano President and CEO Patient Engagement: The New Blockbuster Drug 2013 NHS Scotland Event

2. The New “Blockbuster” Drug

3. Patient EngagementThe New Blockbuster Drug • Large body of scientific literature on clinical inertia and failure to intensify treatment, especially in diabetes and hypertension management • Label patients who can’t or don’t manage all as “non compliant” • No research of de-intensification of unnecessary, ineffective treatment

4. Patient Engagement • Moving from “what’s the matter?” medicine to “what matters to you?” medicine • Susan Edgman-Levitan and Michael Barry • The patient is the team captain; the clinicians are the team’s coaches • Fred Southwick

5. How can we make this move to “What matters to you?”

6. Exercise • Read “Return of the Hero” • Discuss with your colleagues at your tables. • Talk about and make a plan to visit a patient person, without any medical equipment, and learn who they are and what they hope for.

7. Patient Engagement Has the Potential to: • Improve health outcomes • Expand our definition of “the health care workforce” • Lower costs • Improve patient satisfaction

8. Lesson: Will-buildingWill-buildingat the Senior Level Colones’ rounds Walk of shame O’Brien’s breakfast meeting Transparency Sharp end knowledge

9. Will-building Ginny’s Story: http://www.youtube.com/watch?v=s5x1f3_NJX8

10. Serious Safety Event Rate: One View Safety Behavior Training Begins Employee Training Ends Medical Staff Training Ends Rolling 12-month Serious Safety Events expressed per 10,000 adjusted patient days SSER August 2008: 0.41 Average Days between events: 14 days (CY08 Sept YTD) 19 days (CY07) 37 days (CY06)

11. Another View of the Same Data for the Last 3 Months Joe E. 9/23/2008 Wrong Site Surgery Frank H. 6/03/2008 Delay in Tx John L. 4/27/2008 HAI George P. 5/07/2008 Fall Tammy F. 1/17/2008 Post Procedure Death Baby C. 4/13/2008 Delay in Tx Johnny R. 9/08/2008 Delay in Dx. Donald C. 6/26/2008 Delay in Tx Mark G. 8/17/2008 Fall Ralph H. 3/12/2008 Fall Harold C. 8/5/2008 Fall Nick S. 1/4/2008 Delay in Dx Jaunita D. 8/25/2008 Fall Herman D. 3/17/2008 Retained Foreign Obj. Baby D. 8/1/2008 Wrong Pt. Procedure Tom D. 1/29/08 Delay in Tx James A. 9/06/2008 Delay in Dx Roberta A. 10/13/2008 Fall John G. 1/03/2008 Delay in Tx

13. Patient and Family Engagement

14. An Alarming Disconnect • 70 percent of Americans want to die at home…but 70 percent die in institutional settings1 • 80 percent of Californians want to speak to a doctor about end-of-life wishes…but only 7 percent have done so2 • 82 percent of Californians say it’s important to put their wishes in writing…but only 23 percent have done so2 1CDC. Worktable 309: deaths by place of death, age, race, and sex: United States, 2005. 2California HealthCare Foundation. Final chapter: Californians’ attitudes and experiences with death and dying. CHCF, 2012.

15. Two Complementary Initiatives • Everyone’s end-of-life wishes will be expressed and respected • Every one has a story to tell • The conversations are personal, not medical • The power of storytelling • Develop a culture of shared decision making with patients • Improve processes to reliably prompt, store, and access end-of-life care wishes http://www.ihi.org/offerings/Initiatives/ConversationProject/Pages/ConversationReady.aspx http://theconversationproject.org/

16. The Conversation Project • A grassroots movement to encourage everyone to have conversations about end-of-life wishes with loved ones “at the kitchen table” • Bringing about change “from the outside in” • Leveraging media, including social media, to bring messages and tools to all • Targeting specific geographic regions and segments of the population

17. Early Enthusiasm • Over 86,000 visits to website (theconversationproject.org) • Over 43,000 downloads of the Conversation Starter Kit (also available in Spanish)

18. Conversation Ready • IHI initiative: 10 Pioneer organizations committed to being “conversation ready” within one year • Requires a new perspective – moving beyond the current “rescue culture” of US health care • Leveraging the lessons of exemplar organizations such as Gundersen-Lutheran in La Crosse, WI, and Dana-Farber Cancer Institute in Boston, MA

19. Patient Engagement • Redesigned processes in acute care • New ways to think about teamwork

21. Lean Visits at ThedaCare “Encircle Health” • Anticipate and structures to meet all needs in one visit • Lab designed to get results to patient record within 15 minutes • Patients leave with one plan, all results

22. Collaborative Care at ThedaCare • Collaborative rounding on your admission • Evidence-based care • The nurse as manager of care • Electronic Records • Design of physical space

23. Minimally disruptive medicine Health care delivery designed to reduce the burden of treatment on patients while pursuing patient goals

24. Work of being a chronic patient Sense-making work Organizing work and enrolling others Doing the work Reflection, monitoring, appraisal

25. 5000Hours Source: Asch DA, et al. “Automated Hovering in Health Care – Watching Over the 5000 Hours.” New England Journal of Medicine. July 2012: 367(1).

26. Medication Choice Cards Other Cards Low Blood Sugar (hypoglycemia) Blood Sugar (A1c Reduction) Side Effects Daily Routine Daily Sugar Testing

27. Diabetes Visit Cards Developed in England by the Design Council to improve the effectiveness of chronic care visits at physicians’ offices The patient sorts the cards to select issues that form the agenda for the visit Satisfaction is improved and patients report more control of their disease

28. Diabetes Visit Cards

29. Redesigning Care with Patients • Think: • Dose • Place • Tempo

33. Dose • Better Health Greater Cleveland: • In-person educational sessions for the community led by respected clinicians; and digital education for clinicians, medical students, and residents • Texas Medical Association: • County medical societies promoting Choosing WiselyTM recommendations to 47,000 physicians and medical students • State-wide patient campaign • Collaborative to share best practices for implementation • American Society of Echocardiology, MA Medical Society, and American Society of Nuclear Cardiology • Apps to allow for easy search for criteria • Websites for patients and clinicians to use in shared decision making

34. 44 Pediatric GI Centers

35. Purpose of ImproveCareNow Transformhealth, care and costs for all children and adolescents with Crohn’sand ulcerative colitis • sustainablecollaborative chronic care network, enabling patients, families, clinicians and researchers to work together in a learning health care system • accelerate innovation, discovery and the application of new knowledge

36. % of Patients in Remission 18 care centers with > 75% of patients in registry

37. How do you create network–based production for health? • Focus on outcome • Build community • Effective use of technology • Learning system • System science, QI, qualitative research, clinical research

38. Place • George Halvorson’s 4 sites of care: • Hospital beds • Face-to-face • Home • Electronic

39. Place Source: Landro L. “Hospitals Try House Calls to Cut Costs, Admissions.” The Wall Street Journal. Feb. 4, 2013. Available at: http://online.wsj.com/article/SB10001424127887324610504578278102547802848.html

40. Place – New Health Communities • NORCs (Naturally Occurring Retirement Communities) • Strong trend in the US for better elder communities combines with a trend toward self care and decreased confidence in the unquestioned authority of the medical system

41. Place – Schools (site visit) • NHS Tayside and Perth & Kinross Council: • Developing improvement methods by working across a wider community campus model • Designing a ‘strategic coalition’ across the public sector, the voluntary sector and communities. • Almondbank House: outcome-focused improvements which have been delivered in partnership with traditionally hard-to-reach families

42. Tempo • Moving from “2 per year” to “2 per week” • “A year of care” • Technology and MIT’s “15 minutes a quarter”

43. Dose, Place, and Tempo: Self-Dialysis The Old Way • Ryhov Hospital in Jönköping had traditional hemodialysis and peritoneal dialysis center. • But in 2005, a patient, Christian, asked about doing it himself.

44. The New Way Christian taught a 73-yr-old woman how to do it… …and they started to teach others how to do it.

45. The New Way Now they aim to have 75% of patients to be on self-dialysis They currently have 60% of patients

46. Lessons to Date • From Christian (patient): • “I have a new definition of health.” • “I want to live a full life. I have more energy and am complete.” • “I learned and I taught the person next to me, and next to her. The oldest patient on self-dialysis is 83 years old.” • “Of course the care is safer in my hands.”

47. Lessons to Date • From Anette (nurse leader): • Surprised at design differences between patients, family, and staff • Managing at 1/2 – 1/3 less cost per patient • Evidence of better outcomes, lower costs, far fewer complications and infections • “We brought in the county’s employment, helped the patients make or update the CVs, and trained them for a new career.”

49. Update Now calculated costs at 50% of costs in other hemo-dialysis units Complications dramatically reduced and subsequent expensive care avoided Measuring success by “number of patients working”

50. Jonkoping Visit, October 2011