Parents as Partners in Patient Safety Tuesday, March 31, 2009 12:00 – 1:00 p.m. EDT © American Academy of Pediatrics 200

1. Parents as Partners in Patient SafetyTuesday, March 31, 200912:00 – 1:00 p.m. EDT© American Academy of Pediatrics 2009

2. Moderator: Paul Sharek, MD, MPH, FAAP Medical Director of Quality Management Chief Clinical Patient Safety Officer Lucile Packard Children’s Hospital Palo Alto, California

3. DISCLOSURESFinancial Relationships Melissa A. Singleton, MEd, Project Manager-Consultant has disclosed a financial relationship with an entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on, patients. Her husband is employed by Walgreen Co. as a Workforce Administration Manager (technology position) for the company’s call centers. The AAP determined that this financial relationship does not relate to the educational assignment. None of the other involved individuals (Speaker, Moderator, Project Advisory Committee members, or Staff) has disclosed a relevant financial relationship. Refer to full AAP Disclosure Policy & Grid available below for download.

4. DISCLOSURESOff-Label/Investigational Uses None of the involved individuals (Moderator, Project Advisory Committee members, or Staff) has disclosed plans to discuss an unapproved/investigative use of a commercial product/device. Refer to full AAP Disclosure Policy & Grid available below for download.

5. This activity was funded through an educational grant from the Physicians’ Foundation for Health Systems Excellence.

6. Visit our website:http://www.aap.org/saferhealthcareResources: Useful strategies, valuable information links, and expert advice on reducing or eliminating medical errors affecting children.Webinars: Register for an upcoming, live Webinar, and earn a maximum of 1.0 AMA PRA Category 1 Credit™. Or, access a full archive, including audio, from one of the past Webinar offerings. Or, download just the Podcast or slide set from an archive.Latest News: Links to recent articles relating to pediatric patient safety.Email List: An e-community dedicated to pediatric patient safety issues and information exchange with other clinicians.Parents’ Corner: Resources to help parents understand what they can do to help ensure their optimal safety in the health care that their child receives.

7. CME CREDITLive Webinar Only The American Academy of Pediatrics (AAP) is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. The AAP designates this educational activity for a maximum of 1.0 AMA PRA Category 1 Credit™. Physicians should only claim credit commensurate with the extent of their participation in the activity. This activity is acceptable for up to 1.0 AAP credits. These credits can be applied toward the AAP CME/CPD Award available to Fellows and Candidate Members of the American Academy of Pediatrics.

8. OTHER CREDITLive Webinar Only This program is approved for 1.0 NAPNAP contact hours of which 0.0 contain pharmacology (Rx) content per the National Association of Pediatric Nurse Practitioners Continuing Education Guidelines. The American Academy of Physician Assistants accepts AMA PRA Category 1 Credit(s)TM from organizations accredited by the ACCME. Important Note: You must have been pre-registered, and be viewing the live webinar, in order to claim CME or other credit for your participation.

9. LEARNING OBJECTIVESUpon completion of the webinar, participants will be able to: • Discuss the new national trend of partnering with families at the bedside to promote pediatric patient safety. • Describe effective strategies for thoughtfully involving parents as members of the patient safety team. • Cite the perspectives of both a medical leader who has partnered with parents and a parent who has joined the patient safety effort at a major children’s hospital. • Consider the lessons presented about partnering with parents for patient safety in an in-patient setting, and apply selected strategies in an office-based or ambulatory setting.

10. Speaker: Jim Conway, MS, FACHE Senior Vice President Institute for Healthcare Improvement Cambridge, Massachusetts

11. Parents as Partners – Partnering with Patients and Families at AllLevels of an Organization Jim Conway, SVP, IHI jconway@ihi.org

12. Objectives • Discuss the importance of linking partnerships with patients and families to quality and safety to improve outcomes; and • Discuss regional, national, and international efforts to further the development of effective, sustained partnerships with patients and families; • Describe the role of senior leaders in advancing patient- and family-centered care within an organization.

13. Outline • Patient / Family Centered Care: A Growing Expectation • Patient and Family-Centered Care Defined • Publicly Verifiable Elements of PFCC • Designing PFCC into Care and the Board Room • Business Case: • Application and Action.

14. PFCC: Why All the Focus?Perfect Storm Arriving Worldwide • Right thing to do: Patient Rights • Consumerism and advocacy • Patient Safety: face and voice of harm, tragedy • Public reporting: patient experience: media & marketing • Outcomes: chronic illness & self management • Political agenda: access, defects • Stories of leadership and engagement • Hot: PC medical home and e-health

15. Who is Bringing the Focus • Patients, families, consumers worldwide • Health professionals: Spread • Accreditors • Foundations: e.g. CF, RWJ, Kings Fund • Governments; European Union, States • Heath Care Systems and Clinical Associations • Institutes: Institute for Family Centered Care, Institute for Healthcare Improvement, Lucian Leape Institute, Picker Institute, Planetree, WHO Patients as Partners and many more

16. 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 Institute for Family Centered Care

17. …it is why they went into health care. …it just isn’t designed into health care. It is also what clinicians want…

18. Publicly Verifiable PFCCExamples of Current Practice • Mission, vision, values • Leadership, operations • Advisors • Quality improvement • Personnel selection • Environment and design • Information and education • Charting and documentation • Care structures and support • Experience of care

19. “Why So Slow?”

20. PFCC 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.

21. Leadership Primary Driver of Exceptional Experience Governance and executive leaders demonstrate that EVERYTHING in the culture is focused on patient and family centered care, practiced everywhere in the hospital • 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: on decision-making bodies to team members with individual care • PFCC is publicly verifiable, rewarded, and celebrated with a relentless focus on measurement, learning, and improvement with transparent patient feedback • Sufficient staff are available with the tools and skills to deliver the care the patient needs when they need it

22. Leading Edge of Patient and Family Engagement in the US

23. Options: Involving Patients and Families with Boards of Trustees • Showing video of “an infection”: Ginny’s Story YouTube • “Meet my friend Ginny” • CEO interviews of patients / families reported to Board • Recent admissions or serious preventable event • Inviting patients and families to share there experiences of care as part of a board retreat • Making a video of a patient / family interview and show it at the board meeting. • Inviting patients and families to the Board meeting to share their experiences • Inviting patients / families on Board Quality Committee • Inviting trustees to interact with patients on walk rounds

24. 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 Edgman-Levitan S., Shaller D. et al. The CAHPS Improvement Guide. Boston: Harvard Medical School: 2003.

25. 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 Charmel P, Frampton S. Building the Business Case for Patient Centered Care. HFM. March, 2008

26. Key Learning:What Do Patients And Families Bring? • Their knowledge of the illness; It’s About Them! • 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 • Writing in the record, participating in rounds • This doesn’t look right • A passion to achieve the same goals we want

27. 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! Lucian Leape Institute, 2008

28. Extensive Resources • IHI • www.ihi.org • Institute for Family Centered Care • www.familycenteredcare.org • NICHQ • www.nichq.org • Vermont Oxford Network • www.vtoxford.org • Picker Institute • www.pickerinstitute.org • Planetree • www.planetree.org

29. Speaker: Lisa J. Wise, M.Ed. Lead Parent, Family Advisory Council Department of Family Centered Care Lucile Packard Children’s Hospital Palo Alto, California

30. Parents as Partners in Patient Safety: Planting the Seeds for Powerful PartnershipAmerican Academy of Pediatrics - March 31st, 2009 Lisa J. Wise, M.Ed.Lead Parent, Family Advisory CouncilDept. of Family-Centered Care

31. Overview • Ten years in the Boardroom & at the Bedside • Training Parents to Work in Patient Safety • Navigating Hot Topics in Partnership: • Rapid Response Teams, Simulation Training, Hospital Design

32. Michael & Family

33. A Few Faces of Packard’s Family Advisory Council A Few Faces from Packard’s FAC • photo

34. Family Photo

35. Patient Safety is the Elephant in the hospital room

36. Parents Working as Partners in Patient Safety • Right Parent • In the Right Place • At the Right Time • Mantra of: Karen I. Wayman, PhD, LPCH Endowed Director of FCC

37. Packard Children’s Hospital - Department of Family-Centered Care Family Advisory Councils Hospital-Wide FAC Neonatology FAC Cystic Fibrosis FAC Start Date: 2003 Membership: 20 Start Date: 1995 Membership: 14 Start Date: 2003 Membership: 5 CV Workgroup Hispanic FAC Hemophilia FAC Oncology Workgroup Start Date: 2007 Membership: 10 Start Date: 2005 Membership: 4 Requests for parent partnership come from every level at Packard: Patient Safety Committee Quality Improvement Risk Management Infection Control Individual Service Lines (BOB-YIN) Senior Administration Hemophilia Workgrp

38. Packard Children’s Hospital - Family Advisory Council Partners In Patient Safety & Quality 2003-2008 2007-08: • Family Activated Rapid Response Teams • Quality Website • Family Bulletin Board & Brochures Project • Discharge Project • PICU White Boards • Infection Control • Pain Project • MRSA Family Education • New O.R. Simulation • Code Training Video - Simulation • Pregnancy Testing Policy 2005-06: • Rapid Response Teams • MRI Family Guidelines • G-Tube Care • CV Parent Education • Pre-Op Bathing • Co-Sleeping Policy • Pain Project • Parents On Rounds • Placement of Sanitizers • Disclosure Project 2003-04: • Hand Hygiene • Medication Reconciliation Project

39. Packard Children’s Family Advisory Council Working In Partnership with Patient Safety & Quality Six Year Overview

40. What a difference a decade makes… How do we meet the family centered care demands and needs of our institution? NOW: FT Endowed Director (invaluable!) Full Department of Family Centered Care 40 Parent Participants 3 Levels of Parent Participation Veteran ‘Parent Leadership’ Multiple Family Advisory Councils Direct Service line Diffusion Multiple Healthcare Champions - growing! Ongoing projects and partnerships THEN: PT Staff Liaison 1-2 Parents Struggling FAC Handful of Champions Occasional requests

41. In Praise of Low-Hanging Fruit…

42. Packard Children’s Three-Tiered Parent Participant Program Level 3 - Lead Parent Level 2 - Parent Partner Level 1 - Advisory Parent Family Advisory Council © Karen Wayman 2007 Parent Orientation & Training Volunteer Orientation AND FCC Dept.

43. Maximizing your Parent Partners through STEWARDSHIP

44. Journey from Paint Chips to Patient Safety requires patience…

45. A Word of Caution: • The Woods can be • dangerous! Patient Safety & Quality Work require EXTRA parent training!

46. Navigating Hot Topics:Rapid Response Teams Partner: Patient Safety & Quality Improvement Goal: Drastically reduce frequency of codes outside ICUs Throughout 2008, FAC works closely with Quality to effectively define, design and roll out the next step: Family Activated RRT at Packard Children’s Ongoing FAC & Quality partnership blossoms. Regular reports to FAC re: RRT & next steps In 2005, Quality Manager came to FAC for input when first developing new RRT initiative After 17 months of data, Quality returns to FAC to report & get feedback

47. Navigating Hot Topics: Hospital Design & Expansion Partner: Hospital Expansion Team & Senior Administration Goal: Plan to build a new expansion and greatly increase bed size FAC Chair assigned to Expansion Core Design Committee from day 1; accompany team & Sr. Admin on site visits to new hospitals across country; gather family feedback re: key space priorities VP comes to FAC for input re: refurbishing family spaces and redecorating parent lounges. Flavor of the year: picking carpet colors! FAC helps define use of spaces - create Serenity Lounge; draft a family guide to parent lounges; identify areas of concern (sleep space shortage)

48. Navigating Hot Topics: Simulation Training Program Partner: Patient Safety & Risk Management Goal: Create “Medical Disclosure” Training • FCC Dept. Parent Actor Training Program developed by Michele Ashland. Trained Lead Parent Actors work as simulation team members to: • help create scenarios • define parents’ role in sim • develop curriculum for debriefing • act in scenarios in sim lab • have active ‘faculty role’ during debriefing. • FCC Dept hosts ‘Communication Training’ at CAPE for hospitals across the nation re: using simulation. • Next Training: Spring 2009! FAC Tours CAPE (the Center for Advanced Pediatric Education) and sees actors playing parent roles in simulation lab

49. Journal for Healthcare QualitySimulation-Based Medical Error Disclosure Training for Pediatric Healthcare ProfessionalsKaren I. Wayman, Kimberly A. Yaeger, Paul J. Sharek, Sandy Trotter, Lisa Wise, June A. Flora, Louis P. Halamek Journal article published! July/August 2007 Keywords: Communication, Family-centered care, Medical disclosure, Medical error, Self-efficacy, Simulation, Training Ethical and regulatory guidelines recommend disclosure of medical errors to patients and families. Yet few studies examine how to effectively train healthcare professionals to deliver communications about adverse events to family members of affected pediatric patients. This pilot study uses a preintervention-postintervention study design to investigate the effects of medical error disclosure training in a simulated setting for pediatric oncology nurses (N = 16). The results of a paired t test showed statistically significant increases in nurses’ communication self-efficacy to carry out medical disclosure (t = 6.68, p < .001). Ratings of setting “realism” and simulation effectiveness were high (21 out of 25 composite score). Findings provide preliminary support for further research on simulation-based disclosure training for healthcare professionals

50. “The Woods are lovely, dark & deep… ~ Robert Frost • Questions Please!