Creating the Culture of Change: The Role for Patients And Families Susan Edgman-Levitan, PA...

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 Why Involve Patients and Families in Reducing Harm? 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 Why Involve Patients and Families in Reducing Harm? Families in Reducing Harm?

Secure timely feedback, new ideas and additional creativity.

Inspire and energize staff!

Risk Management Literature Supports Risk Management Literature Supports Patient and Family Centered PrinciplesPatient 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”Listening Posts”

Synthesize all feedback from patients and families in one place:SurveysFocus groupsWalkthroughsCompliment/Complaint lettersSafety hotlinesPatient/Family councilsStaff feedbackCommunity groups

Guiding PrinciplesGuiding 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


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


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.


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.


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.


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 PrinciplesGuiding 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


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!


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 General Safety Tips for Patient and FamiliesPatient 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 safetyexperts, healthcare providers and patient advocates Public statement and call to action

National Agenda For ActionNational 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


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


III. ResearchSuggested 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


IV. Services for Patients and FamiliesActions Include: National Resource Center and information line Peer resource counseling National training programs Disclosure and communication programs

NATIONAL PATIENT SAFETY FOUNDATION®

Creating the Culture of Change: The Role for Patients And Families Susan Edgman-Levitan, PA...

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