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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
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.
Why Involve Patients and
Families in Reducing Harm?
 Secure timely feedback, new ideas and
additional creativity.
 Inspire and energize staff!
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)
“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
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
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
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.
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.
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.
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
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
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!
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.
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
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
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
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
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
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
NATIONAL PATIENT SAFETY FOUNDATION
®