Patient and Family Advisory
Councils
Audio Conference Call
July 21, 2009
www.macoalition.org
Patient and Family Advisory Councils
Program Committee
Susan Abookire, MD, MPH, Mount Auburn Hospital
Effie Pappas Brickman, MPA/H, MA Coalition for the Prevention of Medical Errors
Linda Burgess, Consumer Health Quality Council, Health Care for All
Maureen Connor, MPH, RN, previously at Dana Farber Cancer Institute
Christine Combs, MA, RN, Emerson Hospital
Patricia Crombie, MSN, RN, Cambridge Health Alliance
Ken Farbstein, MPP, Consumer Health Quality Council, Health Care for All
Tracy Gay, JD, Betsy Lehman Center, MA Department of Public Health
Anuj Goel, JD, Massachusetts Hospital Association
Paula Griswold, MS, MA Coalition for the Prevention of Medical Errors
Deborah Hoffman, MSW, LCSW, Dana Farber Cancer Institute
Pamela Mann, Kenneth Schwartz Center
Cynthia Medeiros, previously at Dana Farber Cancer Institute
Karen Nelson, MPA, Massachusetts Hospital Association
Randy Peto, MD, MPH, Baystate Medical Center
Lynnie Reid, Children’s Hospital
Brenda Riordan, MPA/H, OTR/L, Northeast Health Systems
Nicola Truppin, JD, Consumer Health Quality Council, Health Care for All
Deborah Wachenheim, Health Care for All
Susan Shaw, Children’s Hospital
Alec Ziss, Consumer Health Quality Council, Health Care for All
2
Patient and Family Advisory Councils
Overview
Maureen Connor, RN, MPH
July 21, 2009
3
Patient and Family Advisory Councils
Creating a patient and family advisory
council can provide an infrastructure to
support patient and family centered care.
4
Patient and family focused versus patient and
family centered care
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In focused care, interventions are done to and for patients
and families rather than with them
In centered care, patients and family members are active
participants
Institute for Family Centered Care
5
Patient and Family Advisory Councils
Agenda
Introduction to Patient and Family Councils and
the Audioconference Series
Paula Griswold
Maureen Connor
Massachusetts Regulations
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Elements and Implementation Timetable
Tracy Gay
Council Models & Composition of a Council: Two Examples
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A Centralized Approach: Cambridge Health Alliance/Somerville Hospital
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A Decentralized Approach: Dana Farber Cancer Institute
Patricia Crombie
Deborah Hoffman
Promoting a Positive Start: Strategies for Leadership and Staff
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Keys to success
Role of Executive Leaders
Strategies for starting and staffing
Marlene Fondrick
Supporting You in this Work
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Resources to support hospitals and implementation
Roadmap to Implementation
Work Plan Development
Next Steps
Questions and Answers
6
Maureen Connor
Patient and Family Advisory Councils
Faculty
Paula Griswold, MS, Executive Director
Massachusetts Coalition for the Prevention of Medical Errors
Tracy Gay, JD, Deputy Director
Betsy Lehman Center for Patient Safety and Medical Error Reduction,
Massachusetts Department of Public Health
Maureen Connor, MPH, RN, formerly of Dana Farber Cancer Institute
Deborah Hoffman, MSW, LCSW, Associate Director, Shapiro Center for
Patients and Families
Dana-Farber Cancer Institute
Pat Crombie, MSN, RN, Site Administrator/Senior Nursing Director
Cambridge Health Alliance/Somerville Hospital Campus
Marlene Fondrick, MSN, RN, Program Associate
Institute for Family Centered Care
7
Patient and Family Advisory Council
Regulations
Tracy Gay, JD
Deputy Director
Betsy Lehman Center
for Patient Safety and
Medical Error Reduction
July 21, 2009
8
Regulatory Process
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9
Chapter 305 of Acts of 2008, August 2008
Regulations introduced to Public Health Council
(PHC) February 2009
Public Hearings March 23rd/30th
Public Comment Period ended April 6th
Regulations adopted by the PHC May 13th
Regulations effective June 12th
Printed in the Massachusetts Register July 24th
Patient and Family Advisory Councils
(Paces)
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10
Requirement of all hospitals licensed under
105 CMR 130.000
Acute care, pediatric, rehabilitation and long
term care hospitals. The requirement does
not apply to public hospitals and mental
health hospitals.
Patient and Family Advisory Councils
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11
Work plan publically available September 30, 2009
Established PFAC by October 1, 2010
Annual reports publically available beginning
October 1, 2010
Meet at least quarterly
Minutes transmitted to the hospital’s governing body
Fifty percent of PFAC members current or former
patients or family members and representative of the
hospital community
Patient and Family Advisory Councils
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Regulations require a hospital-wide PFAC
To the extent allowed by state and federal
law, a PFAC shall advise on:
–
–
–
–
12
Patient and provider relationships
IRBs
Quality improvement initiatives
Patient education on safety and quality matters
Patient and Family Advisory Councils

Development of policies and procedures to:
–
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–
13
Define PFAC goals
Membership
Orientation, training and continuing education
Roles
Responsibilities
Patient and Family Advisory Councils
Questions, email or call:
Tracy Gay at
tracy.gay@state.ma.us,
or (617) 624-5424.
Thank You
14
“I can’t believe someone from a
hospital is calling to ask me what
I think!”
Cambridge Health Alliance
Somerville Hospital
Patient and Family Advisory Council
Background
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Inspired by presentation given to CHA senior
leadership in 2003 by Jim Conway and Pat
Reid Ponte
In 2005 began literature review and started
recruitment inquiries
Intensified focus on patient/family-centered
care and developed tool kits for managers
16
Reactions to Concept of Learning
from Patients and Families, 2003
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Explained value of involving patients to
MD planning a new service
Response: Great idea!
Similar explanation given to another
MD, also planning a new service
Response: What do the patients know?
17
Recruiting: An Adventure
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PCP referrals: 1 patient, 1 daughter of
ICU patient
Phone call inquiry about GI experience
Cultural competency patient panel
participant
Hallway greeting
Referrals by community activists
Ladies Aid
18
Lessons Learned from
Recruitment
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Requires personal contact.
No response from flyers in 4 languages
or large posters.
Save names from previous encounters.
(Patients delighted to be remembered.)
Meet with people on own territory.
Outreach to community activists.
(They know everyone!)
19
Getting Started, March 2006
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Overall goals and ongoing agendas
established by Leadership Steering
Group: Sr. Nursing Director/Site
Administrator, Medical Director, and
Quality Consultant
Other permanent staff members:
Hospitalist; ED Nurse Manager
20
1st Meeting, March 2006
21
Composition of Group
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14 members; 10 are founding members
11 women and 3 men
Diversity of ages (30-87)
Diversity of ethnic backgrounds (Salvadoran,
African-American, White, Brazilian, Indian)
11 are patients
Daughter of ICU patient
2 are community members interested in their
local hospital
22
Interpreter Logistics
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Interpreter calls Council member to
translate agendas/remind re: meetings
Same interpreter accompanies her to
every meeting
They use simultaneous interpreting
equipment so member can participate
fully and group isn’t distracted
23
Logistics
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Member notebooks
Meet monthly, except for August and
December
5:30-7:00 pm
Light supper is served
Budget: notebooks; suppers
24
1st Impressions
What’s welcoming and what’s not?
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What is your first impression as you walk in?
What do you notice about the physical
environment?
What do you notice about the “psychological
environment”?
What feels reassuring?
What bothers you?
What improvement suggestions do you have?
Keep your antennae out!
25
What’s Welcoming…Examples
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I like the new renovations.
People are warm and friendly.
Signage---I am confused where to go.
The Radiology waiting room could use
more artwork.
Posters for Nursing Day show unity and
team spirit.
26
Sounding Board
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Key goal: Help staff realize they can
learn from pts, families and community
members, and that their learning can
inform the way they do their work.
Staff leave with a deepened
understanding, and the realization that
the Advisory Council can be a resource
for them.
27
Working with Sounding Board
Guests: Prep

Meet in advance to help them focus and to
allay their anxiety:
* What are you curious about learning?
* Want input on your overall services?
* Ideas about an improvement working
on?
* Want help with specific HCAHPS or
Press-Ganey questions?
* How might you pose your questions clearly?
28
Working with Sounding Board
Guests: Follow-Up
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Meet after Council meeting to help
them debrief and plan how to use their
learning.
Ask them to let the Council know how
they are using the group’s ideas---either by returning briefly to a meeting
or in writing.
29
Sounding Board Guests
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Discharge Team
Laboratory
Medical Library
Food and Nutrition
Hospitalists
Medical/Surgical RN’s
Geriatric Specialty Unit
Quality Management
30
Sounding Board Guests
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Women’s Health Center
Medication Reconciliation Team
GI Center
Housekeeping
Registration
Marketing
Emergency Dept.
31
Input into Action:
Sounding Board Examples
Service Standards:
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Provided input during development of new CHA Service
Standards
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Held several discussions about “ideal culture of service” to
combine Council’s ideas with staff ideas
Members use assessment form when they come as patients or
with relative/friend; form evaluates quality of Service Standards
behaviors
Quality Consultant reviews forms with managers of departments
assessed in form; managers then discuss patient feedback with
their staff
32
Service Standards Assessment
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Welcoming
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Informing
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Noticing
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Expressing caring and concern
33
Service Standards DVD
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Idea sprang from watching faces of
Sounding Board staff
Goal: capture power of face-to-face
contact
9 Advisory Council members tell stories
that illustrate meaning of particular
Service Standards
34
Input into action, cont.
Medication Reconciliation Team:
 Team developing discharge medication
lists; asked group to evaluate forms
being considered
 Group gave suggestions to clarify
language and format
 Ideas incorporated into final version,
now used at 3 hospital campuses
35
Input into Action, cont.
Discharge Improvement Team:
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Discharge Team wanted input on proposed discharge document

Council suggested changing order of information presented to
make document clearer
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Bilingual members gave suggestions to improve form for limited
English proficiency patients by using both English and patients’
primary language
Group’s ideas incorporated into design
36
Input into Action, cont.
Marketing:
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Input given about draft of Somerville Hospital
campus services brochure
Input requested during time of change about
communication methods for patients and
community; ideas used in marketing plan;
some members will be featured in marketing
materials
37
Anniversary Celebration
38
Anniversary Celebration, Take 2!
39
Key Learning About Working
With Council Members
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“Seal relationships” between members
and Council leaders.
Help members form a solid, caring
group.
Build the group’s commitment by being
compulsive about follow-up!
Ensure ongoing evidence that group’s
input gets translated into action.
40
Accomplishments
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Service Standards
Marketing/Communication strategies
Medical Library focus for patients
Parent Advisory Council for the
Adolescent Assessment Unit
Pain Management Program
Support for Geriatric Psychiatry Families
E.D. Patient Partner role
Registration customer service
Culturally appropriate meals
41
Accomplishments
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DNKA Rates
Specific HCAHPS questions
Medication Reconciliation
Discharge Process
Hospitalist welcome letters
Somerville Hospital brochure
Two family waiting rooms
Housekeeping assessments
New bus shelter
42
What’s Next?
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Continue involvement in CHA changes:
* communication/marketing strategies
* planning for SH transformation
* “community ambassadors”
Develop patient/family educator program. (Service Standards
DVD to Intern orientation, with Council members there for
discussion)
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Use DVD broadly to involve more staff.
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Find opportunities for members to be more involved outside of
our meetings.
43
Reflections on Being a Member
of the Advisory Council, 3-08
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“By describing our experiences we change
staff perceptions of patient care.”
“I feel like a mystery shopper now when I
come in---I have a different perspective. I’m
a better patient, now.”
“When you asked us at the beginning what
we wanted to contribute, you made us feel
part of the hospital.”
44
Reflections, cont.
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“By telling our stories, we have deepened the
understanding of our guests.”
“By describing our perceptions of the hospital, we
have helped to increase understanding of common
community perceptions.”
“In Sounding Board discussions we have offered our
ideas about ways to create a hospital environment
that is attuned to the needs of patients and families.”
45
Reflections, cont.

“We love coming every month, and that says
something, because who wants to go to a
5:30 meeting after work! The reason we are
so excited about participating is because we
actually see results come about from our
suggestions, and it makes us feel
empowered. The healthcare arena can make
us feel powerless and scared. Our Council
gives us a real sense that we can impact and
change some things that pertain to our
healthcare.”
46
A Journey in Patient- and FamilyCentered Care:
The Dana-Farber Cancer Institute
Deborah Hoffman, MSW, LCSW
Associate Director, Center for Patients and Families
Dana-Farber Cancer Institute
Presentation Outline

Dana-Farber’s journey

Creating a sustainable infrastructure of patient and family
involvement
 Examples of involvement
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Creating Councils in other organizations
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Challenges

Benefits
48
Impetus for Change
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1995: Response/lessons from sentinel
patient safety event
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1996: Longwood Medical Area Integration of DanaFarber/Partners Cancer Care
– BWH: All inpatient cancer care and emergency services
– DFCI: All outpatient cancer care
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Patient and family members voice concerns
49
DFCI and BWH Response
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Surveys and focus groups were not enough
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Leadership buy-in (Board, CEO, CNO, COO, CMO)
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Consultation with the Institute for Family Centered Care
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Town meetings: patients, families, staff
50
Leadership Commitment
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Courage to create a culture shift, despite tension
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Decision to start small: patients and family members to join
existing committees and working groups
– Inpatient and outpatient redesign
– Patient education
– “Glitch Rounds”
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Turning point: Choosing patients’ floor plan ideas
51
Patient and Family Response
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Many sobering stories of systems and people
not working effectively in patients’ interest
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Patient and family fears:
– “This is just a PR move”
– “If you really cared about us, you wouldn’t make these changes
– “Everything was fine before”
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Over 100 patient/family participants in 1st year
52
Year One Challenges
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Perceived tokenism, window dressing
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Difficult discussions
– Cool heads needed
– Non-defensive approach
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Not all staff in the same place
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Not all patients/families in the same place
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Unclear what was negotiable/ non-negotiable
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Too much planning and talking; not enough listening
53
Creation of the Patient and Family Advisory
Councils (PFACs)
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1998: Working groups led to first Adult Council Meetings
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1999: Pediatric Council
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Staff Leadership: commitment to be visible but not
dominant
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To represent outpatient and inpatient care
54
First Council Steps
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Long discussions about advocacy
vs. partnership
Mission
Group process and roles
– Handbook
– Bylaws
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New members
Joining additional committees
Reviewing Patient Satisfaction data
55
Adult PFAC Mission
The Adult Patient and Family Advisory Council is dedicated
to assuring the delivery of the highest standards of
comprehensive and compassionate health care by
Dana-Farber/Brigham and Women’s Cancer Center. We
do this by working in active partnership with our health
care providers to:
– strengthen communication and collaboration among patients,
families, caregivers and staff
– promote patient and family advocacy and involvement
– propose and participate in oncology programs, services, and
policies.
56
The Pediatric Patient and Family Advisory Council
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Staff liaisons: co-directors of Pediatric Psychosocial
Support
Decision not to be as formal as Adult Council
Mission, Handbook
Co-chaired by one staff person, one parent
Parents and teen/young adult patients
To represent Dana-Farber/Children’s Hospital Cancer
Care: Outpatient and Inpatient
57
Pediatric PFAC Mission
The Pediatric Patient and Family Advisory Council of DanaFarber/Children’s Hospital Cancer Care is a partnership
of patients, family members, and professional
caregivers. We are dedicated to improving hospital
programs, policies, and the overall quality of cancer care
provided to children, teens, and their families while in
treatment and afterward.
58
Infrastructural Support for Patient- and FamilyCentered Care Model
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Orientation of all new staff to Model of Care
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Patient and Family Advisory Councils
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Budget
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Patient/family resource center
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Volunteer services
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Access to information and resources
59
Adult and Pediatric PFAC Infrastructure
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Monthly meetings
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Active & Emeritus members
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Patient and family co-chairs
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Staff liaison
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Clerical support
60
Role of PFAC member
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Provides feedback, guidance, updates at monthly meetings
 Serves on standing hospital committees
 Participates on working groups and projects
 Generates priority initiatives
 Maintains confidentiality
– Volunteer Orientation
– HIPAA Training
– Sign same confidentiality statement as staff members
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Continually provides expertise of the patient experience
Speaks to audiences
61
In 2009, We Proudly Celebrate
Adult Council’s 11th anniversary
62
In 2009, We Proudly Celebrate
Pediatric Council’s 10th anniversary
63
Committee and Project Integration: Examples
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Handwashing Campaign
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Working on the Wait
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Publication on Responding
to Adverse Events
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Satellite Clinics
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Executive Searches
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Oversight Joint Quality Improvement and
Risk Management (Trustee Level)
64
Teamwork for Safe Care
65
Inpatient Care Improvement Team (BWH)
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Multidisciplinary
Review of Inpatient satisfaction scores
Initiatives
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Discharge Packet
Noise Reduction
Falls Education
Meeting of Emotional and Spiritual Needs
66
Yawkey Center for Cancer Care
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Design
Floor Planning
Centralization
– Registration
– Phlebotomy
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Center for Patients & Families
 Arrival and Departure
 Healing Garden
67
Tissue Banking Educational Video
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Desire to educate patients and families about tissue
banking
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MD presented video to PFAC 3x
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Resulting award-winning video
68
Council-Member Generated Initiatives
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Speakers Bureau
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Legislative Action
Network
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Patient/Family Award
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Suggestion Boxes
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Weekend Initiative
69
Emergency Department Fast Track
Children’s Hospital, Boston
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Pediatric PFAC’s first initiative
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Treatment of pediatric
oncology patients for fever
and neutropenia in the ED
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Fast Track to separate
oncology patients from
other patients
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Widespread positive impact
70
Side by Side
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Vision of a founding member
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Newsletter for patients and
families by patients and
families
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Expansion and inclusion
71
DF/BWCC & DF/CHCC Handbooks
72
Applying This Model to Other Organizations
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Commitment from top leadership essential
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Patient and family integration as an institutional priority
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Identifying current issues requiring improvement
– Organizational (e.g. Patient Satisfaction Scores)
– Patient/Family Concerns
• Patient complaints
• Satisfaction surveys
• Patient/family letters and phone calls
73
Challenges
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Developing and maintaining trust
Differing points of view:
– patients/patients
– patients/staff
– staff/staff
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Creating healthy boundaries
Non-defensive approach
Transparency
True willingness to listen
Patient-centered vs. patient-focused
74
Benefits of an Integrated Model
• Improved patient AND staff satisfaction
• Initiatives done right the first time (cost savings)
• Providers and staff have ready access to the patient and
family perspective
• Patients, family members, and staff have many common
goals – working together achieves dramatic results
75
In Summary

Involving the “consumer,” “end user,” or “customer” is
the right thing to do.

True involvement of patients and families will lead to
better clinical programs in all respects… and ultimately
greater success.
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Patients and families are critical in answering the
question, “Is this change an improvement?”

Without patient and family involvement, organizations
will never be the best they can be.
76
For more information
DFCI website: www.dfci.org/pat/pfacs
77
Promoting a Positive Start: Strategies for
Leadership and
Staff
Keys to success
Role of Executive Leaders
Strategies for starting and staffing
Marlene Fondrick
Senior Leadership
 Importance of senior leadership
 Role of senior leadership
 Identify a champion
 Communicate, communicate,
communicate
 Define Expectations
 Report to senior leadership
80
Identify a Staff Liaison/Recruitment
Coordinator
 Connection between leadership,
staff and family advisors
 Recruitment coordinator
 Initial Questionnaire
 Interview Process
 Define Expectations
 Match Skills and Interests
81
Successful Patient and
Family Advisors
 Recruiting advisors will
be essential.
 See the “big” picture.
 Share personal
experiences in ways
that others can learn
from them.
 Interested in more than
one agenda item.
82
Resources
www.familycenteredcare.org
83
Fostering a Successful Beginning:
Beginning Patient and Family Advisors
 Use of Volunteer Departments or Red
Cross Volunteer
 Importance of Background Checks
 Health Assessment
84
Fostering a Successful Beginning:
Orienting Patient and Family Advisors
 Mission, Values, Priorities of the Unit, Clinic or
Hospital
 Expectations
 Safety-Security Protocols/Infection Control
 Roles and Responsibilities on the Council
 HIPAA Training
 Signing Confidentiality Statement
85
Resources
Article on HIPAA and family-centered care
which includes advisory councils and
patients and families involved in other
advisory roles.
“HIPAA - Providing New Opportunities for
Collaboration”
http://www.familycenteredcare.org/advance/hipaa.pdf
86
Fostering a Successful Beginning:
Orienting Patient and Family Advisors
 Establish ground rules for meetings
 How to be an effective advisor
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87
How to ask questions
What to do when there is a disagreement
Listening and learning from other’s viewpoints
Thinking beyond your own experience
Sharing your story
Telling “negative” stories in a positive way
The impact of anger
Fostering a Successful Beginning:
Selecting Staff
 Select staff who are patient- and family-centered
“champions”
 Staff who are committed to working with patients
and families
 Able to be a representative of the hospital/clinic
 Serve as a connection between other staff and
the advisory group
 Assist in communicating activities of the advisory
group to other staff
 Provide orientation to working with patient and
family advisors
88
Fostering a Successful Beginning:
Orienting Staff
 Explain how staff should be involved.
 The importance of listening
 Be open to questions and
challenges.
 Try not to be defensive.
 Respond/explain without being defensive
 Defensiveness usually has a negative effect
89
Council Structure
 Size
 12 – 30
 Composition
 Reflection constituencies/member diversity
 Terms of Membership
 Staggered terms
90
Council Structure
 Officers
 Staggered terms
 Chair or Co-Chairs
 Establishes agenda
 Leads meetings
 Secretary
 Takes minutes
 Distributes meeting
notices
91
Council Structure
 Staff participation - 2-3 or more
patient and family members to 1 staff
 Encourage other staff to attend as
guests
 Should staff be members in the role
of patient or family member?
92
Structure – Things to Think About
 Bylaws/guiding principles
 Sub-committees
 Compensation and reimbursement
- Childcare and transportation
93
Appreciation



Stipends
Honorariums
Training/Learning
opportunities
 Gift cards
 Cards/E-Cards
 Celebrate accomplishments
94
Patient and Family Advisory Councils:
How to Get Started
 First meetings
 Allow enough time for introductions
 Establishing a plan
 Brainstorm “one change”
 Prioritize
 Do a walk-about
95
Effective Patient and Family
Partnerships - Lessons Learned
 It takes time to develop comfort and
confidence with working in a new way and
to achieve measurable results.
 Orientation and preparation of staff,
physicians, patients, leaders, and families
are essential.
 Advisors can be trained to be effective
advisors.
96
Resources
Institute for Family-Centered Care
website resources:
www.familycenteredcare.org
Click on Tools for Change and then
Downloads
Click on Advancing the Practice and then
Patients and Families as Advisors and
Leaders
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Resources
Institute for FamilyCentered Care:
Developing and
Sustaining a Patient
and Family Advisory
Council
Can be ordered from IFCC
website
www.familycenteredcare.org
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Resources
 Institute for Family-Centered Care
website tools
www.familycenteredcare.org
Click on “Tools for Change” and then
“downloads”
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Resources
Patient and Family Advisory Council
Network (PFACnetwork):
http://mailman.listserve.com/listmanager/listi
nfo/pfacnetwork
Patient and Family Advisors and Leaders of
Advisory Councils for Hospitals
This listserv is for anyone interested in the
work of patient and family advisory councils.
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Patient and Family Advisory Councils
Next Steps
 List Serve
 You will automatically be added to the MA PFAC List Serve
which allows you to consult with colleagues. The List Serve will
be moderated to minimize redundant questions or comments.
 If you prefer not to participate in the List Serve, please send a
message requesting removal to Effie Pappas Brickman at:
ebrickman@macoalition.org.
 Start Developing Work Plan Utilizing Road Map
 Next Call - September
 Let us know what questions you would like answered (email Effie
at ebrickman@macoalition.org)
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PFAC - Supporting You in this Work
Resources
PFAC Hospital Self-Assessment Inventory
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PFAC - Supporting You in this Work
Resources
Template for Hospital Work Plan
Use this Template to help develop written Work Plan by September 30,
2009 outlining hospital’s plan to establish a Council by Oct. 30, 2010.
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PFAC - Supporting You in this Work
Resources
Roadmap for Implementation of PFACs
Use this Roadmap as a resource center and project plan for the steps
involved in developing a PFAC.
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PFAC - Supporting You in this Work
Resources
Toolkit of Resources
Use this listing of resources to access documents listed in the Roadmap
Review PFAC resources from other organizations
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Patient and Family Advisory Councils
Q&A
 If you prefer to email your question during
this Q & A session, please send to:
Effie Pappas Brickman
ebrickman@macoalition.org
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