patient and family advisory councils
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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 - PowerPoint PPT PresentationTRANSCRIPT
Patient and Family Advisory Councils
Audio Conference Call July 21, 2009
www.macoalition.org
Patient and Family Advisory CouncilsProgram Committee
Susan Abookire, MD, MPH, Mount Auburn HospitalEffie Pappas Brickman, MPA/H, MA Coalition for the Prevention of Medical ErrorsLinda Burgess, Consumer Health Quality Council, Health Care for AllMaureen Connor, MPH, RN, previously at Dana Farber Cancer InstituteChristine Combs, MA, RN, Emerson HospitalPatricia Crombie, MSN, RN, Cambridge Health AllianceKen Farbstein, MPP, Consumer Health Quality Council, Health Care for AllTracy Gay, JD, Betsy Lehman Center, MA Department of Public HealthAnuj Goel, JD, Massachusetts Hospital AssociationPaula Griswold, MS, MA Coalition for the Prevention of Medical ErrorsDeborah Hoffman, MSW, LCSW, Dana Farber Cancer InstitutePamela Mann, Kenneth Schwartz Center Cynthia Medeiros, previously at Dana Farber Cancer InstituteKaren Nelson, MPA, Massachusetts Hospital AssociationRandy Peto, MD, MPH, Baystate Medical CenterLynnie Reid, Children’s HospitalBrenda Riordan, MPA/H, OTR/L, Northeast Health Systems Nicola Truppin, JD, Consumer Health Quality Council, Health Care for All Deborah Wachenheim, Health Care for AllSusan Shaw, Children’s HospitalAlec Ziss, Consumer Health Quality Council, Health Care for All 2
Patient and Family Advisory Councils Overview
Maureen Connor, RN, MPH
July 21, 2009
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Patient and Family Advisory Councils
Creating a patient and family advisory council can provide an infrastructure to support patient and family centered care.
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Patient and family focused versus patient and family centered care
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
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Patient and Family Advisory CouncilsAgenda
Introduction to Patient and Family Councils and Paula Griswoldthe Audioconference Series Maureen Connor
Massachusetts Regulations Elements and Implementation Timetable Tracy Gay
Council Models & Composition of a Council: Two Examples A Centralized Approach: Cambridge Health Alliance/Somerville Hospital Patricia Crombie A Decentralized Approach: Dana Farber Cancer Institute Deborah Hoffman
Promoting a Positive Start: Strategies for Leadership and Staff Keys to success Marlene Fondrick Role of Executive Leaders Strategies for starting and staffing
Supporting You in this Work Resources to support hospitals and implementation Maureen Connor Roadmap to Implementation Work Plan Development Next Steps
Questions and Answers
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Patient and Family Advisory CouncilsFaculty
Paula Griswold, MS, Executive DirectorMassachusetts 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 HealthMaureen Connor, MPH, RN, formerly of Dana Farber Cancer InstituteDeborah Hoffman, MSW, LCSW, Associate Director, Shapiro Center for
Patients and FamiliesDana-Farber Cancer Institute
Pat Crombie, MSN, RN, Site Administrator/Senior Nursing DirectorCambridge Health Alliance/Somerville Hospital Campus
Marlene Fondrick, MSN, RN, Program AssociateInstitute for Family Centered Care
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Patient and Family Advisory Council Regulations
Tracy Gay, JDDeputy DirectorBetsy Lehman Centerfor Patient Safety and Medical Error Reduction
July 21, 2009
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Regulatory Process
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
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Patient and Family Advisory Councils (Paces)
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.
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Patient and Family Advisory Councils
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
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Patient and Family Advisory Councils
Regulations require a hospital-wide PFAC To the extent allowed by state and federal
law, a PFAC shall advise on: – Patient and provider relationships– IRBs– Quality improvement initiatives– Patient education on safety and quality matters
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Patient and Family Advisory Councils
Development of policies and procedures to:– Define PFAC goals– Membership– Orientation, training and continuing education– Roles – Responsibilities
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Patient and Family Advisory Councils
Questions, email or call:
Tracy Gay at [email protected],
or (617) 624-5424.
Thank You
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“I can’t believe someone from a hospital is calling to ask me what I think!”
Cambridge Health AllianceSomerville Hospital
Patient and Family Advisory Council
Background 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
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Reactions to Concept of Learning from Patients and
Families, 2003 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?
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Recruiting: An Adventure 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
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Lessons Learned from Recruitment
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!)
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Getting Started, March 2006
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
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1st Meeting, March 2006
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Composition of Group 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 hospital22
Interpreter Logistics 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
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Logistics Member notebooks Meet monthly, except for August
and December 5:30-7:00 pm Light supper is served Budget: notebooks; suppers
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1st ImpressionsWhat’s welcoming and what’s not?
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!
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What’s Welcoming…Examples
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.
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Sounding Board 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.
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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
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.
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Sounding Board Guests Discharge Team Laboratory Medical Library Food and Nutrition Hospitalists Medical/Surgical RN’s Geriatric Specialty Unit Quality Management
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Sounding Board Guests Women’s Health Center Medication Reconciliation Team GI Center Housekeeping Registration Marketing Emergency Dept.
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Input into Action:Sounding Board Examples
Service Standards: Provided input during development of new CHA Service
Standards
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
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Service Standards Assessment
Welcoming
Informing
Noticing
Expressing caring and concern33
Service Standards DVD 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
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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
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Input into Action, cont.Discharge Improvement Team:
Discharge Team wanted input on proposed discharge document
Council suggested changing order of information presented to make document clearer
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
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Input into Action, cont.Marketing:
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
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Anniversary Celebration
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Anniversary Celebration, Take 2!
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Key Learning About Working With Council
Members “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.
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Accomplishments 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
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Accomplishments DNKA Rates Specific HCAHPS questions Medication Reconciliation Discharge Process Hospitalist welcome letters Somerville Hospital brochure Two family waiting rooms Housekeeping assessments New bus shelter
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What’s Next? 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)
Use DVD broadly to involve more staff.
Find opportunities for members to be more involved outside of our meetings.
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Reflections on Being a Member
of the Advisory Council, 3-08 “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.”
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Reflections, cont. “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.”
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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.”
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A Journey in Patient- and Family-Centered Care:
The Dana-Farber Cancer InstituteDeborah Hoffman, MSW, LCSW
Associate Director, Center for Patients and FamiliesDana-Farber Cancer Institute
Presentation Outline
Dana-Farber’s journey Creating a sustainable infrastructure of patient and family
involvement Examples of involvement Creating Councils in other organizations Challenges Benefits
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Impetus for Change
1995: Response/lessons from sentinel patient safety event
1996: Longwood Medical Area Integration of Dana-Farber/Partners Cancer Care – BWH: All inpatient cancer care and emergency services – DFCI: All outpatient cancer care
Patient and family members voice concerns
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DFCI and BWH Response Surveys and focus groups were not enough
Leadership buy-in (Board, CEO, CNO, COO, CMO)
Consultation with the Institute for Family Centered Care
Town meetings: patients, families, staff
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Leadership Commitment
Courage to create a culture shift, despite tension
Decision to start small: patients and family members to join existing committees and working groups– Inpatient and outpatient redesign– Patient education– “Glitch Rounds”
Turning point: Choosing patients’ floor plan ideas
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Patient and Family Response
Many sobering stories of systems and peoplenot working effectively in patients’ interest
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”
Over 100 patient/family participants in 1st year
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Year One Challenges
Perceived tokenism, window dressing
Difficult discussions– Cool heads needed– Non-defensive approach
Not all staff in the same place
Not all patients/families in the same place
Unclear what was negotiable/ non-negotiable
Too much planning and talking; not enough listening 53
Creation of the Patient and Family Advisory Councils (PFACs)
1998: Working groups led to first Adult Council Meetings
1999: Pediatric Council
Staff Leadership: commitment to be visible but not dominant
To represent outpatient and inpatient care
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First Council Steps
Long discussions about advocacy vs. partnership
Mission Group process and roles
– Handbook– Bylaws
New members Joining additional committees Reviewing Patient Satisfaction data
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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
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
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Pediatric PFAC Mission
The Pediatric Patient and Family Advisory Council of Dana-Farber/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.
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Infrastructural Support for Patient- and Family-Centered Care Model Orientation of all new staff to Model of Care
Patient and Family Advisory Councils
Budget
Patient/family resource center
Volunteer services
Access to information and resources59
Adult and Pediatric PFAC Infrastructure
Monthly meetings
Active & Emeritus members
Patient and family co-chairs
Staff liaison
Clerical support60
Role of PFAC member
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
Continually provides expertise of the patient experience Speaks to audiences
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In 2009, We Proudly Celebrate
Adult Council’s 11th anniversary
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In 2009, We Proudly Celebrate
Pediatric Council’s 10th anniversary
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Handwashing Campaign
Working on the Wait
Publication on Respondingto Adverse Events
Satellite Clinics
Executive Searches
Oversight Joint Quality Improvement and Risk Management (Trustee Level)
Committee and Project Integration: Examples
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Teamwork for Safe Care
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Inpatient Care Improvement Team (BWH)
Multidisciplinary Review of Inpatient satisfaction scores Initiatives
– Discharge Packet– Noise Reduction– Falls Education– Meeting of Emotional and Spiritual Needs
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Yawkey Center for Cancer Care
Design Floor Planning Centralization
– Registration– Phlebotomy
Center for Patients & Families Arrival and Departure Healing Garden
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Tissue Banking Educational Video
Desire to educate patients and families about tissue banking
MD presented video to PFAC 3x
Resulting award-winning video
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Council-Member Generated Initiatives
Speakers Bureau
Legislative Action Network
Patient/Family Award
Suggestion Boxes
Weekend Initiative
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Emergency Department Fast TrackChildren’s Hospital, Boston
Pediatric PFAC’s first initiative
Treatment of pediatric oncology patients for fever and neutropenia in the ED
Fast Track to separate oncology patients from other patients
Widespread positive impact70
Side by Side
Vision of a founding member
Newsletter for patients and families by patients and families
Expansion and inclusion
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DF/BWCC & DF/CHCC Handbooks
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Applying This Model to Other Organizations
Commitment from top leadership essential
Patient and family integration as an institutional priority Identifying current issues requiring improvement
– Organizational (e.g. Patient Satisfaction Scores)
– Patient/Family Concerns
• Patient complaints
• Satisfaction surveys
• Patient/family letters and phone calls73
Challenges
Developing and maintaining trust Differing points of view:
– patients/patients– patients/staff– staff/staff
Creating healthy boundaries Non-defensive approach Transparency True willingness to listen Patient-centered vs. patient-focused
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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
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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.
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
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Promoting a Positive Start: Strategies for Leadership and Staff
Keys to successRole of Executive LeadersStrategies for starting and staffing Marlene Fondrick
Senior Leadership
Importance of senior leadershipRole of senior leadership Identify a championCommunicate, communicate,
communicateDefine ExpectationsReport to senior leadership
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Identify a Staff Liaison/Recruitment Coordinator
Connection between leadership, staff and family advisors
Recruitment coordinator Initial Questionnaire Interview ProcessDefine ExpectationsMatch Skills and Interests
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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.
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Fostering a Successful Beginning: Beginning Patient and Family Advisors
Use of Volunteer Departments or Red Cross Volunteer
Importance of Background ChecksHealth Assessment
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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
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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
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Fostering a Successful Beginning: Orienting Patient and Family Advisors
Establish ground rules for meetings
How to be an effective advisor 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
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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/clinicServe as a connection between other staff and
the advisory groupAssist in communicating activities of the advisory
group to other staffProvide orientation to working with patient and
family advisors
Fostering a Successful Beginning: Selecting Staff
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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
Fostering a Successful Beginning: Orienting Staff
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Council Structure
Size12 – 30
CompositionReflection constituencies/member diversity
Terms of MembershipStaggered terms
90
Council Structure
Officers Staggered terms
Chair or Co-Chairs Establishes agenda Leads meetings
Secretary Takes minutes Distributes meeting
notices
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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?
Council Structure
92
Bylaws/guiding principlesSub-committees Compensation and reimbursement - Childcare and transportation
Structure – Things to Think About
93
Stipends Honorariums Training/Learning
opportunities Gift cards Cards/E-Cards Celebrate accomplishments
Appreciation
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Patient and Family Advisory Councils: How to Get Started
First meetingsAllow enough time for introductionsEstablishing a planBrainstorm “one change”PrioritizeDo a walk-about
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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
Institute for Family-Centered Care website resources:
www.familycenteredcare.orgClick on Tools for Change and then
DownloadsClick on Advancing the Practice and then
Patients and Families as Advisors and Leaders
Resources
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Institute for Family-Centered Care:Developing and Sustaining a Patient and Family Advisory Council
Can be ordered from IFCC websitewww.familycenteredcare.org
Resources
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Institute for Family-Centered Care website tools
www.familycenteredcare.orgClick on “Tools for Change” and then
“downloads”
Resources
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Patient and Family Advisory Council Network (PFACnetwork):
http://mailman.listserve.com/listmanager/listinfo/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.
Resources
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Patient and Family Advisory CouncilsNext 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: [email protected].
Start Developing Work Plan Utilizing Road Map Next Call - September
Let us know what questions you would like answered (email Effie at [email protected])
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PFAC - Supporting You in this WorkResources
PFAC Hospital Self-Assessment Inventory
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PFAC - Supporting You in this WorkResources
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 WorkResources
Roadmap for Implementation of PFACsUse 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 WorkResources
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 [email protected]
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