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

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Parents as Partners in Patient Safety Tuesday, March 31, 2009 12:00 – 1:00 p.m. EDT © American Academy of Pediatrics 2009. Moderator: Paul Sharek, MD, MPH, FAAP Medical Director of Quality Management Chief Clinical Patient Safety Officer Lucile Packard Children’s Hospital

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

Paul Sharek, MD, MPH, FAAP

Medical Director of Quality Management

Chief Clinical Patient Safety Officer

Lucile Packard Children’s Hospital

Palo Alto, California

disclosures financial relationships
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.

disclosures off label investigational uses
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.

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

Visit our website: 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.

cme credit live webinar only
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.

other credit live webinar only
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.

learning objectives upon completion of the webinar participants will be able to
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.

Jim Conway, MS, FACHE

Senior Vice President

Institute for Healthcare Improvement

Cambridge, Massachusetts

parents as partners partnering with patients and families at all levels of an organization

Parents as Partners – Partnering with Patients and Families at AllLevels of an Organization

Jim Conway, SVP, IHI

  • 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.
  • 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.
pfcc why all the focus perfect storm arriving worldwide
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
who is bringing the focus
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
four key concepts of pfcc
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

publicly verifiable pfcc examples of current practice
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
pfcc will take leadership at every level

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.



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
options involving patients and families with boards of trustees
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
patient experience is strongly correlated with other key outcomes
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.

financial benefits of patient centered care in planetree
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

key learning what do patients and families bring
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
the time is now

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

extensive resources
Extensive Resources
  • IHI
  • Institute for Family Centered Care
  • Vermont Oxford Network
  • Picker Institute
  • Planetree

Lisa J. Wise, M.Ed.

Lead Parent, Family Advisory Council

Department of Family Centered Care

Lucile Packard Children’s Hospital

Palo Alto, California


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



  • 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
a few faces of packard s family advisory council
A Few Faces of Packard’s Family Advisory Council

A Few Faces from Packard’s FAC

  • photo

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

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


Packard Children’s Hospital - Family Advisory Council

Partners In Patient Safety & Quality



  • 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 -


  • Pregnancy Testing Policy


  • 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


  • Hand Hygiene
  • Medication

Reconciliation Project


Packard Children’s Family Advisory Council

Working In Partnership with Patient Safety & Quality

Six Year Overview


What a difference a decade makes…

How do we meet the family centered care

demands and needs of our institution?


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


PT Staff Liaison

1-2 Parents

Struggling FAC

Handful of Champions

Occasional requests

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.

A Word of Caution:
  • The Woods can be
  • dangerous!

Patient Safety

& Quality Work

require EXTRA

parent training!

navigating hot topics rapid response teams
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 &




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

navigating hot topics hospital design expansion
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


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)

navigating hot topics simulation training program
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!


(the Center for

Advanced Pediatric


and sees actors

playing parent roles

in simulation lab


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


“The Woods are lovely, dark & deep…

~ Robert Frost

  • Questions Please!