1. Creating the Culture of Change: The Role for Patients And Families Susan Edgman-Levitan, PA Executive Director John D. Stoeckle Center for Primary Care Innovation Massachusetts General Hospital

2. Why Involve Patients and Families in Reducing Harm?  We can’t afford to to go on “playing short.”  Patients and families experience the gaps and fragmentation in the system and see things we miss.  Keep health care professionals, agency staff and leaders honest and grounded in reality.

3. Why Involve Patients and Families in Reducing Harm?  Secure timely feedback, new ideas and additional creativity.  Inspire and energize staff!

4. Risk Management Literature Supports Patient and Family Centered Principles  Communication problems that can lead to malpractice allegations :  Failing to understand patient and family perspectives  Delivering information poorly  Devaluing patient and/or family views  Desertion (Bechman et al., Archives of Internal Medicine, 1994)

5. “Listening Posts” Synthesize all feedback from patients and families in one place: Surveys Focus groups Walkthroughs Compliment/Complaint letters Safety hotlines Patient/Family councils Staff feedback Community groups

6. Guiding Principles  Patients and families partner with healthcare professionals to set policies, design programs and establish priorities for continuous improvement  Create Patient and Family Advisory Councils

7. Guiding Principles  Patients and families as faculty for the health professions and employees  Participate in employee orientation  Share experiences in in-service programs  Teach medical students and house staff about partnership and disclosure

8. Guiding Principles  Never separate the patient and the family, unless the patient requests it.  Families are offered ways to keep in touch with clinical staff when they cannot be with the patient such as e-mail, beepers, voice mailboxes, and telephones.  Nursing units, intensive care units, and the emergency room will be open to families 24 hours a day, during shift changes, rounds, a code, and other emergency situations.

9. Guiding Principles  Never separate the patient and the family, unless the patient requests it.  Identify the primary family caregiver/ spokespersons with an ID card. Provide meals, discounted parking, skills training to support them.  Family members are welcomed to stay with the patient during anesthesia induction, in the recovery room, in radiology, in the emergency room, and during treatments and procedures.

10. Guiding Principles  Never deny the patient and family information, unless the patient requests it.  Offer the chart to patients for review: drug allergies, past and family history  On admission to the unit or to a new practice, orient the patient and the family to the ICU, the equipment, and introduce the team members.

11. Guiding Principles  Never deny the patient and family information, unless the patient requests it.  Wash and wipe boards  Always provide all test results  Offer families and patients scheduled conferences with the interdisciplinary team to discuss care

12. Guiding Principles  Never deny the patient and family information, unless the patient requests it.  Question and “doc talk” cards for patients and families  Procedures and Tests  Medications  Therapy: PT, OT, RT, other  Home care/self care  Restrictions: activity, dietary, other  Pain control  Follow-up

13. Guiding Principles  Never deny the patient and family information, unless the patient requests it.  Customize written discharge instructions by condition or procedure through the eyes of the patient and family.  Make sure the patient and family knows whom to call if they have questions.  Do everything possible to ensure NO SURPRISES!

14. Guiding Principles  Coordinate care and transfer trust  Share care plans and clinical pathways with patients and families  When possible, coordinate diagnostic procedures so that a family member can be present, if desired by the patient and family.  Facilitate trust by introducing the family and patient to the head nurse of the transitional unit or to new clinicians.

15. General Safety Tips for Patient and Families  Emphasize everywhere in every way that it is OK to question any clinician or staff member: “We’re all in this together…”  Always question unusual or unexpected tests or medications  Buttons: “Ask me to check your armband.”, “Ask me if I’ve washed my hands.”  Tent cards in the room with a problem “hot line” contact number for patients, families, and staff  Executive walkarounds should include patients as well as staff

16. National Agenda for Action: Patients and Families in Patient Safety  Created by the National Patient Safety Foundation  A collaboration of patients, families, patient safety experts, healthcare providers and patient advocates  Public statement and call to action

17. National Agenda For Action I. Education and Awareness for:  General public (patients, families, media)  Healthcare organizations and professionals  Behavioral health professionals (social workers) Messages:  Knowledge about and prevention of errors  Importance of patient/family perspective  Experiencing medical errors differs from other types of trauma

18. National Agenda For Action II. Building a Patient and Family-Centered Culture Actions include:  Patient voice heard through Patient and Family Advisory Counsels and Board representation  Disclosure policies  Communication skills  Effective patient advocacy  State patient safety task forces

19. National Agenda For Action III. Research Suggested areas for research include:  “Bridging the Gap”  Disclosure  Integrating patients and families into systems  Team relationships (including patients/families)  Post traumatic stress specific to medical error

20. National Agenda For Action IV. Services for Patients and Families Actions Include:  National Resource Center and information line  Peer resource counseling  National training programs  Disclosure and communication programs

21. NATIONAL PATIENT SAFETY FOUNDATION ®