1. 1 Moving Outside the Boundaries of the Doctor's Office “The Impossible Dream” Sherri T. Loeb, BSN, RN Patient Advocate, Personal Care Giver, 30+ Year Practicing Nurse sherriloeb@gmail.com Copyright Sherri T. Loeb RN,BSN, 2014

2. 2 Our Perspective On A Broken Healthcare System Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

3. 3 My Background Bachelors Degree in Medical Technology Bachelors Degree in Nursing (Med/Surg, Cardiac, ICU) 30 + years in Health Care Almost 30 years of bedside nursing Heavily involved in in-patient patient safety activities Served as Clinical Trials Nurse/Coordinator Spoken Nationally on Patient and Family Engagement Member of Patient and Family Advisory Council for Quality and Safety Copyright: 2013: Sherri T. Loeb RN, BSN.

4. 4 Jerod's Health Care Journey... Routine physical in August 2011, was asymptomatic and felt in perfect health; only complaint – minor low back pain PSA in 2009 – 1.29 PSA in 2011 – 535 (yes, 535) Biopsy: Gleason 8 (4+4) (positive 3 of 12 core samples) Stage IV prostate cancer at diagnosis with significant bone metastases Standard androgen deprivation therapy - failed at 3 months Local oncologist – next option to offer was “what insurance would cover”, not what would be the best treatment Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

5. Jerod's Health Care Journey After prodding by us off-label use of abiraterone at an out of pocket cost of $6,000/month – No suggestion of clinical trial Enrolled in clinical trials at NIH Clinical Center in Bethesda, Maryland and the MD Anderson Cancer Center in Houston, Texas; monthly trips to Houston Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD

6. 6 Copyright; The New Yorker Sept. 23, 2013

7. 7 We Have Seen The Best Of Health Care And The Worst Of Health Care…. Drugs that work and then stop working Physicians who prescribe drugs that should not be prescribed together Dispensing errors; failures to accurately reconcile medications The interesting phenomenon of being hurt in order to be helped Unanticipated drug-drug interactions Forgetting to be told the results of significantly abnormal laboratory results Almost never being given good news without the inevitable "but" that all cancer patients can associate with An association with several oncologists who care and are extraordinary role models - and some who are not Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

8. 8 Patient-centered care supports active involvement of patients and their families in the design of new care models and in decision-making about individual options for treatment. The IOM (Institute of Medicine) defines patient-centered care as: "Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions." Donald Berwick MD, MPA

9. Making Individual Health Care Decisions Can Be Hard – Even With Good Evidence And Even For Someone In The Field For Many Years Technical Quality Is Important - But So Too Is Patient Experience Of Care 9 Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

10. 10 The Hierarchy Gradient in Health Care

11. Copyright © 2012 American Medical Association. All rights reserved. From: Communicating With Physicians About Medical Decisions: A Reluctance to Disagree Arch Intern Med. 2012;():1-2. doi:10.1001/archinternmed.2012.2360 Percentage of participants who would ask questions of, discuss preferences with, or express disagreement to their physician when relevant. 11

12. 12 Some “ Loeb Maxims ” To Remember What We Have Learned In The Last 24 Months…… Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

13. 13 …But Choose Your Health Care Provider Even More Carefully –Not all physicians or hospitals have the same expertise –Ratings (hospital and physician), while ubiquitous, are often irrelevant, and many times, just wrong –Access to innovative care depends on innovative caregivers with innovative knowledge and awareness –Patient ’ s values and desires matter, especially when the evidence runs out as it often does in cancer –Interdisciplinary vs. multidisciplinary Copyright 2013: Sherri T. Loeb RN, BSN, Jerod M. Loeb, PhD Choose Your Disease Carefully…

14. Patient and Family Engagement A set of beliefs and behaviors by patients, family members, and health professionals and a set of organizational policies, procedures and interventions that ensure both the inclusion of patients and families as central members of the healthcare team and active partnerships with providers and provider organizations. Benjamin K. Chu, M.D. Chair of the AHA’s Board of Trustees 14

15. Surviving A Health Care Crisis Requires Having A Relative/Friend With You At All Times E ven health care professionals become deaf, dumb and blind when in crisis mode about their own health Navigation of the health care system requires a map, a guide, and an extraordinary amount of skill and stamina – even for those who work in the system And that is before you have to deal with insurers 15 Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

16. Communication Failures Are The Rule And Not The Exception Literacy levels are low…..and health literacy levels are even lower Communication failures at transitions of care are nearly ubiquitous…..and harm patients every day These failures occur between physicians and physicians, physicians and nurses, nurses and nurses, and between all types of caregivers and patients 16 Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

17. 17 With increased attention on transitions of care in light of the recent scrutiny of duty hours, consultations and other interphysician interactions, such as handoffs, are becoming increasingly important. As modern medicine increases in complexity, the skill of communicating with medical colleagues throughout the continuum of care becomes more challenging. Improving Consultation Communication Skills in Undergraduate Medical Education A cademic Medicine, June 2013 - Volume 88 - Issue 6 p 753-758 Kessler, Chad S. MD, MHPE; Chan, Teresa MD; Loeb, Jennifer M.; Malka, S. Terez MD I ’m Clear, You’re Clear, We’re All Clear:

18. 18 …is an approach where clinicians and patients communicate together using the best available evidence when faced with the task of making decisions, where patients are supported to deliberate about the possible attributes and consequences of options, to arrive at informed... http://en.wikipedia.org/wiki/Shared_decision_making Shared decision making …

19. The Next Generation … …..of health care professionals is our only hope We need to stop producing square pegs for round holes Tinkering with the system will not fix the problems with the system Apology, disclosure, teamwork, collective mindfulness, high reliability systems, and elimination of variation will go a long way toward helping improve quality and reduce the risk of adverse events 19 Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

20. 20 The Actual Next Generation

21. 21 The Reality... “I have the distinct feeling that the patient in America is becoming invisible. She is unseen and unheard....I gently insist that we go to the bedside, but that is often a place where the team is no longer at ease. I realize what has happened: the patient in the bed is merely an icon for the real patient in the computer.” A. M. Nussbaum, MD A Piece of My Mind JAMA July 17, 2013

22. A Cynical Mantra Educate the young Regulate the old Hope the rest retire or die off With Thanks To David Mayer, MD 22

23. First Hospitalization in Houston Cancer Center – January 2013 100% Hand Washing Phenomenal Communication – White boards in ED and Inpatient Rooms Bedside Handoff Report between RN’s Patient Centered Compassionate Care Shared Decision Making Patient and Family Engagement Team Approach Excellent Transitions in Care Patient Safety Key in all areas of care 23

24. 24 Local Hospitalization Missing vital signs No patient assessment Bypassing of CPOE alarm system (audible and visible) No communication among caregiver(s) and patient/family members No communication among physicians Lack of hand hygiene Lack of patient identification Absence of Shared decision-making Picc line experience Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD. - July 2013

25. 25 “I think there is a revolution coming. In the past, patients were expected to be obedient and compliant.” Harlan M. Krumholz, MD, SM Yale School of Public Health July 2013

26. 26 Front-Line Lessons The power of friendship triumphs Care is not the same from MD to MD or from HCO to HCO ★ Patients should not be compared Nursing and compassion are not the same Standard of care may be perfect for some - but not for all Importance of leadership, leadership, leadership Patient and family engagement means everything Hiring the right employees is key Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

27. Recent Experience With Hospice/Palliative Care Patient Centered Compassionate Care Shared Decision Making Patient and Family Engagement Genuine Love For Profession Treated Patient Not Disease Knew The Ultimate Outcome But Never Ever Lost The Passion For Caring Knew When It Was Time To Prepare For The End Treated The Family Not Just The Patient 27 Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD

28. 28 Reasonable Expectations That Patients Who Are Seriously Ill Deserve To Have Fulfilled: To have one’s pain and other physical symptoms regularly assessed and competently treated. To have adequate information about one’s condition and treatments, in clear and simple terms. To have care coordinated between visits and among physicians and health programs involved in one’s care. To have crises prevented when possible and have clear plans for managing emergencies in place. To have enough nurses and aides on staff in hospitals and nursing homes to provide safe and high quality care To have one’s family supported in giving care, in their own strain and, eventually, in their grief. Ira Byock MD The Best Care Possible

29. You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome. Our job is improving the quality of life, not just delaying death. We need to start treating the patient as well as the disease. You actually are a doctor and admitted it, you’d say, “I don’t cure a huge percentage, I don’t have a 50 percent cure rate…(but) I can have a 100 percent compassion rate.” Hunter “Patch” Adams MD 1998 29

30. 30 Some May Wonder Why Physicians Keep Trying Different Meds and Different Treatments When Many Think The Situation Is Hopeless...... But Have They Asked The Patient, Because That Is Where The Real Answer Lies? Our First Family Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

31. 31 Our Second Family Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

32. 32 Our Third Family Copyright: 2013: Sherri T. Loeb RN, BSN & Jerod M. Loeb, PhD.

33. 33...”But Never, Ever, Take Away Hope....” LaMar S. McGinnis, Jr., MD, FACS Member, The Joint Commission Board of Commissioners Former President, American Cancer Society Former President, American College of Surgeons

34. 34 Thank You For Allowing Me To Share Our Story!

35. In Loving Memory of Jerod 35

36. 36 Moving Outside the Boundaries of the Doctor's Office “The Impossible Dream” Sherri T. Loeb, BSN, RN Patient Advocate, Personal Care Giver, 30+ Year Practicing Nurse sherriloeb@gmail.com Copyright Sherri T. Loeb RN,BSN, 2014

37. © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

38. Patient and Family Engagement “a set of beliefs and behaviors by patients, family members, and health professionals and a set of organizational policies, procedures and interventions that ensure both the inclusion of patients and families as central members of the health care team and active partnerships with providers and provider organizations” - Benjamin K. Chu, M.D. Chair of the AHA’s Board of Trustees, Health Research & Educational Trust/American Hospital Association, 2013 © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

39. Reality for Patients and Caregivers 6 Feb 2012 Coordinate Prepare Decide Evaluate Communicate Partner Coordinate Prepare Decide Evaluate Communicate Partner X Images provided by K. Sheridan © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

40. Impact and Cost of Chronic Conditions One Chronic Condition Multiple Chronic Condition No Chronic Condition Caregivers Almost 1/3 people in the US manage at least one chronic condition More than 3/4 of US healthcare dollars are spent on their behalf Data extrapolated from 1.Wolff JL, Boult C, Boyd C, Anderson G. Newly reported chronic conditions and onset of functional dependency. J Am Geriatr Soc 2005;53:851–855. 2.Bodenheimer, T., Chen E., Bennett, H. Health Affairs 28, no. 1 (2009): 64–74; 10.1377/hlthaff.28.1.64 3.AARP Public Policy Institute. Insight on the Issues, November 2008: Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

41. Using Technology to Close the Gap Collect high-value data without adding burden Minimize the number of steps necessary Present data in concise, meaningful way Enable and incentivize patients to partner with providers EASY FAST EFFECTIVE PATIENT- CENTRIC 1. IMS Institute for Healthcare Informatics. “Patient Apps for Improved Healthcare: From Novelty to Mainstream.” Parsippany, NJ: October 2013 2. The MITRE Corporation healthAction Patient Toolkit research © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

42. Missing Data: Symptom Severity Image source: The MITRE Corporation © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

43. Missing Data: Compliance Image source: The MITRE Corporation © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

44. Enabling Integration of Data © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

45. Concise, Meaningful Visualization Image sources: The MITRE Corporation © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

46. Meaningful Use and Patient- Generated Data ONC. “Patient-Generated Health Data: White Paper”. April 2012. Stage 1Stage 2Stage 3 2011-201220142016 D ATA CAPTURE AND SHARING A DVANCE CLINICAL PROCESSES I MPROVED OUTCOMES “Consider Stage 3 Meaningful Use criteria to enable and support the use of PGHD by providers; Convene stakeholders to identify PGHD opportunities, barriers, and value; Support development and use of PGHD-related standards; and Conduct additional PGHD research to collect lessons learned, support adoption, and inform policy”. © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

47. Making It Easy, Fast and Patient-Centric Image sources: The MITRE Corporation © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

48. Enabling Patient-Provider Partnership Pre- appointment checklist Tailored provider report – Patient goals, notes, questions – Symptom status – Medication list, response and compliance Support during appointment Post appointment updates Image sources: The MITRE Corporation © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

49. Shared Understanding …the inclusion of patients and families as central members of the health care team and active partnerships with providers and provider organizations. © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

50. Patient Engagement And Patient- Generated Data National e-Health Collaborative. “Patient Engagement Framework.” http://www.nationalehealth.org/stages-patient-engagement-frameworkhttp://www.nationalehealth.org/stages-patient-engagement-framework © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108

51. Triple Aim ● Better Care Improve the overall quality, by making health care more patient-centered, reliable, accessible & safe. ● Healthy People, Healthy Communities Improve the health of all Americans by supporting proven interventions to address behavioral, social & environmental determinants of health in addition to delivering higher-quality care. ● Affordable Care Reduce the cost of quality health care for individuals, families, employers & government. © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108 National Quality Strategy, 2013 Annual Progress Report Update, August 8, 2013

52. Empowering Patients Outside the Doctor’s Office Compassionate, Informed Care Team Well-informed, Engaged Patient Partnership Improved health outcomes at lower cost © 2014 The MITRE Corporation. All rights reserved. Approved for public release. Distribution unlimited. Case number 14-1108