Nothing About Me Without Me

1. Nothing About Me Without Me Improving Health and Wellness Through Patient Engagement Cathy Rick, RN PhD (h) NEA-BC FAAN FACHE Senior Advisor Jonas Center for Nursing and Veterans Healthcare Former Chief Nursing Officer, Department of Veterans Affairs

2. Patient Engagement 2014

3. Objectives • Current Aspects of US Healthcare • Define Patient Engagement • Nursing Practice Related to Patient Engagement • Envisioned Impact of Patient Engagement • Academic and Research for Patient Engagement • Q&A Patient Engagement 2014

4. Patient Centered Carelong history • Covered in the literature for more than 50 years (Hobbs, 2009) • actual processes and how they relate to patient outcomes is not well understood. • Institute of Medicine (IOM) put forth PCC as one of its six objectives for improving health care in the 21st century (IOM, 2001), many health care organizations have embraced the notion of PCC as central to their strategic missions and values • With health care reform in the United States, attention has turned toward innovative delivery systems that involve aspects of PCC, such as the patient centered medical homes and accountable care organizations (Rittenhouse, Shortell, & Fisher, 2009). • PCC encompasses providing care that is compassionate, empathetic, and responsive to the needs, values, and expressed preferences of each individual patient; patients should be informed decision makers in their care (IOM, 2001). Patient Engagement 2014

5. Current Aspects of Patient Engagement • PCC should consider the patient as an experiencing individual beyond being just an object of disease (Mead and Bower 2000) • care providers must have an understanding of the patient’s context • A “therapeutic alliance” must be established between care providers and patients. • Rather than care providers acting as “hosts” for patients in the health care system, true PCC would mean that providers are “guests” in patients’ lives (Berwick (2009) “The experience (to the extent the individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care” Berwick Patient Engagement 2014

6. The Affordable Care Act permits the introduction of incentives for healthy behaviors that are potentially worth up to half of total insurance premiums, providing unprecedented opportunities for innovation in incentives and health benefits design to affect health behaviors. 61% of employers identify employees’ poor health habits as top challenge to maintain affordable health benefits Health Affairs July 2013 Patient Engagement 2014

7. Guide to Patient and Family Engagement in Hospital Safety and Quality • Encourage patients and family members to participate as advisors. • Promote better communication among patients, family members, and health care professionals from the point of admission. • Implement safe continuity of care by keeping the patient and family informed through nurse bedside change-of-shift reports. • Engage patients and families in discharge planning throughout the hospital stay. http://www.ahrq.gov/research/findings/final-reports/ptfamilyscan/index.html Patient Engagement 2014

8. An environmental scan was conducted that serves as an evidence based foundation for the development of the Guide. In conducting this environmental scan, the intent was to reflect the concepts of consumer engagement and patient- and family centered carearound the issues of patient safety and quality in the hospital setting; and incorporate diverse input and perspectives from multiple individuals and organizations representing patients, families, health professionals, and hospitals. http://www.ahrq.gov/qual/ptfamilyscan Nov 2009-Feb 2010 Patient Engagement 2014

9. Barriers and Facilitators for Patients and Families • fear, • uncertainty, • low health literacy, • and provider reactions. • self-efficacy, • information, • invitations to engage, • and provider support. Patient Engagement 2014

10. Barriers and Facilitators for Healthcare Team to Support Patient Engagement • professional norms • experiences, • fear of litigation, • and perceived level of effort. • desire to imitate competitors • health care legislation or mandated policies, • leadership from influential bodies, • alignment of financial incentives; public reporting, and accreditation and awards • occurrence of a sentinel event, • the business case, • the desire to improve quality and safety performance, • stories from patients and families, and altruism. Patient Engagement 2014

11. Organizational Factors • organization’s understanding of and experience with patient and family engagement, • the existing quality and safety culture, • the strength of leadership at all levels, • the hierarchy (whether rules, regulations, and reporting relationships are emphasized), • the existence of slack resources (cushion of resources that can be used in a discretionary manner), • absorptive capacity (ability to identify, capture, interpret, share, reframe, and recodify new knowledge to link it with its own knowledge base, and to put it to appropriate use), • internal alignment (consistency of plans, processes, information, resource decisions, actions, results, and analysis to support and/or change key organizational goals). Patient Engagement 2014

12. Need to shift approaches from patients being passive recipients of care Improving the way healthcare clinicians communicate with patients is essential to providing and excellent patient AND clinician experience.

13. DefiningPatient Engagement

14. Many Terms Surround the Topic • Patient Experience • Patient Satisfaction • Patient Engagement • Patient Activation • Patient and Family Centered Care Voice of Nursing Leadership May 2014 Mary-Michael Brown Medstar Health, Columbia, MD Patient Engagement 2014

15. Patient Experience, Patient Satisfaction Patient experience represents the patients’ perceptions of the care they received … influenced by patient’s opinion of hospital environment & culture as well as interactions with and observations of healthcare team Patient satisfaction is the degree to which their care met their expectations …CMS Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS); results posted on CMS website “Hospital Compare”. Eight domains highly affected by nursing interventions Patient Engagement 2014

16. Patient Engagement Actions a patient takes to manage his/her health and gain the greatest benefits from available health care services. Inclusive of patient experience and satisfaction Incorporates direct care, governance and policy making Three phases: consultation, involvement, partnership/shared leadership Patient Engagement 2014

17. Patient Activation A patient’s willingness and ability to participate in their health and healthcare and is influenced by patient’s knowledge, motivation and confidence to do so. Four levels: Stage 1: believes active role is important but remains passive Stage 2: has confidence and knowledge and is thinking of doing so Stage 3: is actively involved in managing own health Stage 4: fully managing own health and will likely stay the course even if stressed Patient Engagement 2014

18. Patient and Family-Centered Care Ideal partnership that honors patient preferences, makes certain that patients have requisite information, and support to make decisions about their care and places the patient and family at the center of all decisions about their care. Patient Engagement 2014

19. Patients define PCC eight dimensions Picker Institute/Commonwealth Fund • respect for patient preferences, values, and expressed needs; • information, education, and communication; • coordination and integration of care and services; • emotional support; • physical comfort; • involvement of family and close others; • continuity and transition from hospital to home; • access to care and services (Gerteis, Edgman-Levitan, Daley, & Delbanco, 1993; Gerteis, Edgman-Levitan, Walker, et al., 1993) Patient Engagement 2014

20. Nursing Practice related to Patient Engagement

21. Nurses Play a Fundamental Role Honor patient wishes by centering interventions around patient values, hopes and needs. Nothing About Me…Without Me Eliminate labeling patients as non-compliant or non-adherent Patient Engagement 2014

22. Role of Nurses Front line of quality improvement initiatives Responsible for real impact on patient/family engagement Nurses at the intersection of everything and everyone Dearth of tools specifically for nurses on how to better communicate with patients and vice versa Patient Engagement 2014

23. What is your experience? What are your stories?What tools work for you?

24. Nursing Practice Supporting Patient Engagement • Bedside rounds & Shift Reports • Coordinating transitions of care • Patient/family initiated rapid response teams • Open visitation, family presence during procedures • Open access and contribution to medical records, committees, focus groups… • White boards for communication: shared daily plans/plan for life • Pre-visit coaching, transition planning • Just-in-time information/explanations… options and consequences of choices • Blameless apology Patient Engagement 2014

25. Let Patients Help by Dave DeBronkart • Allow patients to proofread their medical records • When patients or families want to check the medications that you’re giving them… welcome it • When patients say, “I didn’t see you wash your hands”, thank them and do it Patient Engagement 2014

26. Practical tips for nursesDave deBronkart • Stop referring to patients in the third person as if they are not in the room. • Let patients and families fill in the blanks on things that might be missing from their records. • Recognize that Googling about one’s diagnoses is a sign of patient engagement. • Adopt the belief that patients will perform better in managing their care if they are better informed. • Understand that information alone is not enough—make it easier for patients to do the right thing by designing easy interventions and reminders. • Work to clarify and simplify your messages when giving patients information. • See the value in patient networking—patients with similar problems know what patients want to know. • Welcome family interest in the patient’s care. • Let patients scour the earth for information on their health problems and appreciate their efforts. • Let patients help with quality and safety by valuing their questions and reminders. Patient Engagement 2014

27. Important Ingredients • Motivational Interviewing • Wellness Coaching • Worksite Wellness • Integrate Wellness into Value Based Healthcare Patient Engagement 2014

28. Technology Support • Putting Patients in the Drivers Seat • Secure Messaging • Open Notes • Prescription management • Appointment and Diagnostic Test Results • Health Calendars and Journals • Health Information Library • Blue Button • Smart Phones Patient Engagement 2014

29. How do we know when its working? OPTIONwww.optioninstrument.comCardif University, UKDid the nurse… • draw attention to an identified problem as one that requires decision-making? • state that there’s more than one way to deal with it? • assess patient’s preferred approach? • list options which include choice of “no action”? • explain pros and cons of options? • explore patient’s expectations or ideas? • explore patient’s concerns/fears? • check that patient understands? • offer patient explicit opportunities to ask questions throughout? • elicit patient’s preferred level of involvement? • indicate the need for a decision making stage… “time to make a decision”? • indicate the need to review the decision? Patient Engagement 2014

30. Resources • Joint Commission “Speak Up” • Cleveland Clinic REDE Model • National Alliance for Quality Care (NAQC) Guiding Principles for Patient Engagement • www.ahrq.gov Links to resources • MyHealtheVetwww.myhealth.va.gov • National Patient Safety Foundation “Ask Me 3” • American Hospital Association- Second Curve of Population Health • Institute for Patient- and Family-Centered Care • HIPAA Rights www.hhs.gov/ocr Patient Engagement 2014

31. A nursing role as navigator versus all nurses navigating …something to think about! Patient Engagement 2014

32. Organizational role • Vision and values related to patient engagement • Leaders serve as role models • Resources and infrastructure • Involve and support clinicians and all staff in patient and family engagement initiatives • Integrate patient and family engagement into personnel policies and practices Source: AHRQ Guide to Patient and Family Engagement Patient Engagement 2014

33. Envisioned Impact of Patient Engagement

34. Impact • Reduced need for telephone calls and waiting on hold • Avoid duplicate tests, readmissions and procedures • Move more easily from provider to provider, system to system • Improve efficiency and safety • Respond to Joint Commission standards • Personalized health & wellness reminders • Bottom line: Improve patient outcomes Patient Engagement 2014

35. Joint Commission Standards • Effectively communicates with patients • Coordinates care, treatments etc. • Patient education based on patient needs • Follow up care, treatment, services • Patient’s rights to receive understandable information • Patient’s rights to participate in decisions about care, treatment, service Patient Engagement 2014

36. Examples Georgia Health Sciences Medical Center implemented changes to visitation policy to promote patient and family engagement: 62% reduction in medication errors 40% reduction in falls 50% decrease in length of stayVeterans Health Administration Patient Aligned Care Teams National Program Office & Board Committe: Patient Engagement National Program Office: Health Equity Patient Engagement 2014

37. Patient outcomes • Emotional health • Symptom resolution • Functioning • Pain control • Physiologic measures such as blood pressure and blood sugar levels • Reduced rate of preventable admissions/readmissions Source: AHRQ Guide to Patient and Family Engagement Patient Engagement 2014

38. Improved financial performance through patients engaged and serving as early warning • Decreases in litigation and malpractice claims • Fewer complications leading to shorter length of stay • Improved patient flow and bed capacity • Reduced overcrowding • Reduced call volume • Decreased need for referrals Source: AHRQ Guide to Patient and Family Engagement Patient Engagement 2014

39. Your thoughts about desired impact… Nursing priorities??

40. Anticipated Outcomes • Improved communication • Improved care team/patient partnerships • Improved quality of care/patient safety • Improved patient experiences of care • More efficient use of resources • Improved provider satisfaction • Improved patient outcomes/health Patient Engagement 2014

41. Academic and Research Priorities Patient Engagement 2014

42. Research shows that when patients are engaged in their healthcare, it can lead to measureable improvements in safety and quality. Agency for Healthcare Research and Quality (AHRQ) Patient Engagement 2014

43. Current Research • patients who experienced more PCC in the hospital had better outcomes, it is possible that better PCC leads to patient trust in the system, which could in turn motivate patient adherence and actions that lead to better outcomes. (Meterko 2010) • positive relationships between PCC processes and patient satisfaction and well-being. • patient satisfaction with the care experience has become an important outcome in its own right. • some research suggests that patient well-being and satisfaction may be related to mediating variables, such as adherence and self-management behaviors • (Kahn et al., 2007; Lemmens et al., 2008). Patient Engagement 2014

44. Academic-Practice Partnerships • Important mechanism to strengthen nursing practice and positions nurse to lead change and advance health • Prepare nurses of the future to practice and lead, provide mechanisms for lifelong learning • AACN-AONE resources Patient Engagement 2014

45. Suggested Academic and Research Initiatives • structural factors impacting organization’s ability to adopt and sustain innovations • nurse-patient communication materials • key pre-implementation and implementation steps • implementation information on the specific tools and strategies used in the patient and family engagement efforts. Patient Engagement 2014

46. Closing comments Patient Engagement 2014

47. Shifting the model Historically, many patients have been dependent on their primary care providers and their nurses to direct their care. The implementation of the Affordable Care Act is shifting this paradigm. The age of the Internet has also enticed patients to get more involved. One has only to look at a website such as Patients like Me™ where more than 200,000 patients connect with one another for information on more than 1500 diseases. As nurses, our focus needs to shift to health coaching that goes way beyond our current patient education model, which is more passive. If you truly listen to patients, you will be amazed at what the patient knows about themselves and their disease process. Getting patients more engaged in their care will reduce healthcare costs, improve outcomes, and make our care environments safer. It is a win-win for everyone involved. American Nurse Today Issue Date: February 2014 Vol. 9 No. 2Author: Rose O. Sherman, EdD, RN, NEA-BC, FAAN, and Nancy Hilton, MN, RN, NEA-BC Patient Engagement 2014

48. Patient engagement makes a difference in population health Care coordination, care delivery transformation, equity, operational excellence, patient safety and quality “The Second Curve of Population Health” Hospitals in Pursuit of Excellence (HPOE.org) Patient Engagement 2014

49. “Patient engagement is the blockbuster drug of the 21st century” Susan Dentzer, editor of HealthAffairs Patient Engagement 2014

50. Ten Important Two-Letter Words: If it is to be…it is up to me