Patient and Family Advisory Councils Audio Conference Call

Patient and Family Advisory Councils Audio Conference Call July 21, 2009 www. macoalition. org

Patient and Family Advisory Councils Program Committee 2 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

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 § § 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 Massachusetts Regulations § Elements and Implementation Timetable Paula Griswold Maureen Connor 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 Role of Executive Leaders Strategies for starting and staffing Marlene Fondrick Supporting You in this Work § § 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 l l l l 9 Chapter 305 of Acts of 2008, August 2008 Regulations introduced to Public Health Council (PHC) February 2009 Public Hearings March 23 rd/30 th Public Comment Period ended April 6 th Regulations adopted by the PHC May 13 th Regulations effective June 12 th Printed in the Massachusetts Register July 24 th

Patient and Family Advisory Councils (Paces) l l 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 l l l 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 l l 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 l Development of policies and procedures to: – – – 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 n n n 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 n n 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 n n n 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 n n n 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 n n 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

1 st Meeting, March 2006 21

Composition of Group n n n n 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 n n n 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 n n n Member notebooks Meet monthly, except for August and December 5: 30 -7: 00 pm Light supper is served Budget: notebooks; suppers 24

1 st Impressions What’s welcoming and what’s not? n n n 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 n n n 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 n n 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 n 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 n n 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 n n n n Discharge Team Laboratory Medical Library Food and Nutrition Hospitalists Medical/Surgical RN’s Geriatric Specialty Unit Quality Management 30

Sounding Board Guests n n n n Women’s Health Center Medication Reconciliation Team GI Center Housekeeping Registration Marketing Emergency Dept. 31

Input into Action: Sounding Board Examples Service Standards: n Provided input during development of new CHA Service Standards n n n 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 n Welcoming n Informing n Noticing n Expressing caring and concern 33

Service Standards DVD n n n 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: n Team developing discharge medication lists; asked group to evaluate forms being considered n Group gave suggestions to clarify language and format n Ideas incorporated into final version, now used at 3 hospital campuses 35

Input into Action, cont. Discharge Improvement Team: n Discharge Team wanted input on proposed discharge document n Council suggested changing order of information presented to make document clearer n n 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: n n 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 n n “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 n n § § § 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 § § § § § 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? n n 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) n Use DVD broadly to involve more staff. n Find opportunities for members to be more involved outside of our meetings. 43

Reflections on Being a Member of the Advisory Council, 3 -08 n n n “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. n n n “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. n “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 Family. Centered 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 § § Creating Councils in other organizations § Challenges § Benefits 48

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 49

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 50

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 51

Patient and Family Response § Many sobering stories of systems and people not 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 1 st year 52

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 54

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 § 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 § § § 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 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. 58

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 resources 59

Adult and Pediatric PFAC Infrastructure § Monthly meetings § Active & Emeritus members § Patient and family co-chairs § Staff liaison § Clerical support 60

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 § 61

In 2009, We Proudly Celebrate Adult Council’s 11 th anniversary 62

In 2009, We Proudly Celebrate Pediatric Council’s 10 th anniversary 63

Committee and Project Integration: Examples § Handwashing Campaign § Working on the Wait § Publication on Responding to Adverse Events § Satellite Clinics § Executive Searches § Oversight Joint Quality Improvement and Risk Management (Trustee Level) 64

Teamwork for Safe Care 65

Inpatient Care Improvement Team (BWH) Multidisciplinary § Review of Inpatient satisfaction scores § Initiatives § – – Discharge Packet Noise Reduction Falls Education Meeting of Emotional and Spiritual Needs 66

Yawkey Center for Cancer Care Design § Floor Planning § Centralization § – Registration – Phlebotomy Center for Patients & Families § Arrival and Departure § Healing Garden § 67

Tissue Banking Educational Video § Desire to educate patients and families about tissue banking § MD presented video to PFAC 3 x § Resulting award-winning video 68

Council-Member Generated Initiatives § Speakers Bureau § Legislative Action Network § Patient/Family Award § Suggestion Boxes § Weekend Initiative 69

Emergency Department Fast Track Children’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 impact 70

Side by Side § Vision of a founding member § Newsletter for patients and families by patients and families § Expansion and inclusion 71

DF/BWCC & DF/CHCC Handbooks 72

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 calls 73

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 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. § 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 t Importance of senior leadership t Role of senior leadership t Identify a champion t Communicate, communicate, communicate t Define Expectations 80 t Report to senior leadership

Identify a Staff Liaison/Recruitment Coordinator t Connection between leadership, staff and family advisors t Recruitment coordinator t Initial Questionnaire t Interview Process t Define Expectations 81 t Match Skills and Interests

Successful Patient and Family Advisors t Recruiting advisors will be essential. t See the “big” picture. t Share personal experiences in ways that others can learn from them. t Interested in more than one agenda item. 82

Resources www. familycenteredcare. org 83

Fostering a Successful Beginning: Beginning Patient and Family Advisors t Use of Volunteer Departments or Red Cross Volunteer t Importance of Background Checks t Health Assessment 84

Fostering a Successful Beginning: Orienting Patient and Family Advisors t Mission, Values, Priorities of the Unit, Clinic or Hospital t Expectations t Safety-Security Protocols/Infection Control t Roles and Responsibilities on the Council t HIPAA Training t 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 t Establish ground rules for meetings t How to be an effective advisor n n n n 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 t Select staff who are patient- and family-centered “champions” t Staff who are committed to working with patients and families t Able to be a representative of the hospital/clinic t Serve as a connection between other staff and the advisory group t Assist in communicating activities of the advisory group to other staff t Provide orientation to working with patient and family advisors 88

Fostering a Successful Beginning: Orienting Staff t Explain how staff should be involved. n The importance of listening t Be open to questions and challenges. t Try not to be defensive. n Respond/explain without being defensive n Defensiveness usually has a negative effect 89

Council Structure t Size n 12 – 30 t Composition n Reflection constituencies/member diversity t Terms of Membership n Staggered terms 90

Council Structure t Officers n Staggered terms t Chair or Co-Chairs n Establishes agenda n Leads meetings t Secretary n Takes minutes n Distributes meeting notices 91

Council Structure t Staff participation - 2 -3 or more patient and family members to 1 staff t Encourage other staff to attend as guests t Should staff be members in the role of patient or family member? 92

Structure – Things to Think About t Bylaws/guiding principles t Sub-committees t Compensation and reimbursement - Childcare and transportation 93

Appreciation Stipends Honorariums Training/Learning opportunities t Gift cards t Cards/E-Cards t Celebrate accomplishments t t t 94

Patient and Family Advisory Councils: How to Get Started t First meetings t Allow enough time for introductions t Establishing a plan t Brainstorm “one change” t Prioritize t Do a walk-about 95

Effective Patient and Family Partnerships - Lessons Learned t It takes time to develop comfort and confidence with working in a new way and to achieve measurable results. t Orientation and preparation of staff, physicians, patients, leaders, and families are essential. t Advisors can be trained to be effective advisors. 96

Resources Institute for Family-Centered Care website resources: www. familycenteredcare. org n. Click on Tools for Change and then Downloads n. Click on Advancing the Practice and then Patients and Families as Advisors and Leaders 97

Resources Institute for Family. Centered Care: Developing and Sustaining a Patient and Family Advisory Council Can be ordered from IFCC website www. familycenteredcare. org 98

Resources t Institute for Family-Centered Care website tools ¨www. familycenteredcare. org ¨Click on “Tools for Change” and then “downloads” 99

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. 100

Patient and Family Advisory Councils Next Steps § List Serve § § Start Developing Work Plan Utilizing Road Map Next Call - September § 101 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. Let us know what questions you would like answered (email Effie at ebrickman@macoalition. org)

PFAC - Supporting You in this Work Resources PFAC Hospital Self-Assessment Inventory 102

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. 103

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. 104

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 105

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 106