4/11/2016

1

Steps To Success: Launching And Sustaining APatient Family Advisory Council

MD Anderson Cancer Center

Steps To Success: Launching And Sustaining A

Patient Family Advisory Council

April 2016

Amy HallPatient & Family Advisor

Kathy Denton, PhD., C.P.H.Q.Associate Director of Patient Experience

Debbie Schultz, M.Ed., L.P.A., C.P.H.Q.Associate Director Volunteer Services

Welcome

3

4/11/2016

2

Overview

MD Anderson OverviewHistory Organizational StructureRecruitment and OnboardingServing as an AdvisorSustainability

• PFAC /PFAP • Institutional level

QuestionsCopies of forms and documents

Introhttps://youtu.be/qeIXpb

gS0Jo

MD Anderson Cancer Center

April 13, 2016

4/11/2016

3

Patient Care Statistics

Education StatisticsMore than 6,600 trainees, including physicians, scientists, nurses and allied health professionals, took part in educational programs at MD Anderson in FY15.

Nearly 21,000 employees, including almost 1,700 faculty

906 on-site volunteers, who contributed 145,452 hours of service

2437 off-site volunteers and nine myCancerConnection programs making 125,002 total contacts

Our people • FY 2015

4/11/2016

4

Our LocationsIn addition to MD Anderson’s main campus in the Texas Medical Center and two research campuses in Bastrop County, Texas, the institution has developed a number of local, national and international locations.Houston-area care centersBay Area, Katy, West Houston (diagnostic imaging), Bellaire (diagnostic imaging), Sugar Land, The Woodlands, Memorial City (surgical clinic), The Woman’s Hospital of Texas (gynecologic oncology)MD Anderson is now the exclusive provider of breast radiology services for 15 of Memorial Hermann’s breast care centers in the Houston area. MD Anderson physicians provide cancer care to patients at Lyndon B. Johnson Hospital.

MD Anderson Cancer Network® Partner members: Banner MD Anderson Cancer Center (Gilbert, Arizona), MD Anderson Cancer Center at Cooper (Camden, New Jersey), Baptist MD Anderson Cancer Center (Jacksonville, Florida), and MD Anderson Cancer Center at Summit Medical Group (Berkeley Heights, New Jersey)Associate member: Hospital Israelita Albert Einstein (São Paulo, Brazil)Certified members: 14 hospitals and health systems in 12 states

MD Anderson affiliatesMD Anderson Cancer Center Madrid (Spain) MD Anderson Radiation Treatment Center at American Hospital (Istanbul) MD Anderson Radiation Treatment Center at Presbyterian Kaseman Hospital (Albuquerque, New Mexico)

Mission, Vision, and Values

MissionThe mission of The University of Texas MD Anderson Cancer Center is to eliminate cancer in Texas, the nation, and the world through outstanding programs that integrate patient care, research and prevention, and through education for undergraduate and graduate students, trainees, professionals, employees and the public.

VisionWe shall be the premier cancer center in the world, based on the excellence of our people, our research-driven patient care and our science. We are Making Cancer History™.

Core ValuesCaring – Discovery - Integrity

Defining the Patient Experience

11

4/11/2016

5

History

History

• Children’s Cancer Hospital:Family Advisory Council started in 2008

• Adult - Patient Family Advisory Council (PFAC) development committee established 2013

• May 2014 – first PFAC meeting• January 2016 – expanded program to

Patient & Family Advisor Program

Committee: Initiated October 2013 – Core Group attended IPFCC Training

Representatives from:Patient Education Patient & Family Engagement Volunteer Services

Patients (3) Global Network Inpatient Nursing

Outpatient Nursing Internal Communications Pediatric FAC Program

Initial implementation committee

Key success factor: ownership in patient experience by many divisions

4/11/2016

6

2008• MD Anderson

Children’s Cancer Hospital establishes Pediatric Parent-Family Advisory Council

March 2013• MDA employees attend

Institute of Patient and Family Centered Care PFAC training seminar

June 2013• Strategic Planning

Group endorses formation of Patient and Family Advisory Council

October 2013• Working group begins

project to plan a PFAC• Institutional Committee

established – attended IPFCC

April 2014• Invited 27

patients/family members and 12 MDA employees to join PFAC

May 2014• First PFAC meeting

and New Advisor Orientation

Sept 2014 – Aug 2015 • Patient and family

members and employees individually added throughout the year on a request basis

July 2015Moved from a Program in the Division of Nursing to a Department under the

Vice-President for Performance Improvement

September 2015Recruitment of new PFAC

MembersUpdated By-Laws.

Expansion of Patient and Family Advisor Program .

December 2016New Advisors selected ……………………………………………………

………

January 2016• New Advisor

Orientation

Timeline

Key success factor: leadership focus on patient experience at an institutional level

Organizational Structure

Patient and Family Advisor Program

Department of Patient Experience

Office of Performance Improvement

John BinghamVice President of

Performance Improvement

Quality & Safety Subcommittee

Executive Clinical Operations Team (ECOT)

OPIPress GaneySurvey

Contract

DI Patient Experience Committee

Family Advisory Council

Pediatrics

Organizational Structure

Key success factors: Patient voice linked to safety and quality

4/11/2016

7

Recruitment and Onboarding

Communication:• mymdanderson.org announcement (patient portal)

• Information flyers in Volunteer Services and Hospitality Centers

• Story in This Week an Internal Communications patient focused flyer

Selection:• 30 day application window

• Application submitted to Director of Patient and Family Engagement

• Face-face interview with at least 1 committee member (30-45 minutes)

• Standard interview evaluation criteria and form

• Range 20-25 members (22 selected)

• Committee review meeting to select council members

• ranked top 3

• discussed selection criteria

Initial PFAC recruitment - March 2014

Communication:• mymdanderson.org announcement (patient portal)

• Information flyers in Volunteer Services and Hospitality Centers and PIKNIC

• Story in This Week an Internal Communications patient focused flyer

Selection:• 30 day application window (October) - Over 80 applications

• Application submitted through Patient Experience email or mailed to Director

• Face-face interview preference with 2 committee members

• Standard interview evaluation criteria and form

QUICKLY REALIZED NEED TO CHANGE – expanded to PFAP…

PROGRAM EXPANDED after first day of interviews.

PFAC-PFAP recruitment – October 2015

4/11/2016

8

.

OnboardingInitial March/May 2014 Onboarding• Completed during first PFAC meeting

• Role of advisor and example opportunities

• All paperwork completed individually outside of meeting

Second Onboarding January 2016• Orientation session

• 2 ½ hours

• Roles and responsibilities of advisors

• Opportunities

• Required forms and education

Serving as an advisor

Roles and responsibilities Be observant of what is going on around you

Please do not expect to be treated any differently or to receive special

favors as a patient and family advisor

Please represent all patients and families, not just your personal issues

Serving on a committee: Represent all patients and families

Ask the staff members to help you understand the committee’s purpose,

goals, and any words or language unique to the committee

Seek to offer constructive input of storytelling and limit complaining

4/11/2016

9

Patient and Family Advisor (PFA)Definition:Patient and Family Advisor role will enable patients and families to have direct input and influence on the policies, programs, and practices that affect the care and services individuals and families receive at MD Anderson Cancer Center.

Purpose: The patient and their family are at the center of the care and services at MD Anderson Cancer Center. Therefore, involvement of Patient and Family Advisors will enhance communication and improve patient satisfaction, quality of care, and safety in a collaborative effort.

Role: The Patient and Family Advisor offers input into patient care and organization processes, and advocates Patient and Family needs from a broad perspective.

Advisor Program Purpose Statement

While supporting the mission and vision of MD Anderson Cancer Center, we will strive to continually improve the experience of care for patients and families.

Keeping dignity and respect at the forefront, our goals are to:1. Educate stakeholders on the philosophy and core concepts of

Patient-and-Family-Centered Care2. Develop, implement and evaluate policies, programs and services

through the collaboration of patients, families, faculty, staff and community.

3. Create a partnership with patients, families, faculty and staff that promotes advocacy and involvement

To promote a better understanding of the principles of patient and

family-centered health care among patients and the MD Anderson

community.

To channel information, needs and concerns to the MD Anderson

Cancer Center administration and staff.

To be active consultants with regard to decisions and plans that

affect MD Anderson Cancer Center patients and families.

To assist in promoting positive relationships between MD Anderson

Cancer Center and members of the community.

Patient and Family Advisor Responsibilities

4/11/2016

10

Activity Ground Rules/Tips Arrive on time

Major decisions are made by consensus

Discussions should be held in open and honest atmosphere

Allow others to complete their comments before beginning yours

Contribute to discussion but monitor your talking time to assure that

others have the opportunity to participate

Actively listen to what individuals have to say and verify perceptions

No side conversations

Follow through with commitments

Stay focused on the topic at hand

Seek balanced participation

Ground Rules/Tips Continued:

Address disagreements directly

No hidden agendas

Communicate with co-facilitators or the staff liaison, if unable to

attend meetings

Refrain from using hospital jargon

All ideas are valuable

Be aware of confidentiality issues and guidelines

Communication Tips Use “I” statements to describe how you feel instead of blaming or

accusing

Share the time with other team members and listen. Seek first to

understand, then to be understood

Try to be non-judgmental in sharing and listening

TEAM – Together, Everyone, Achieves, More

4/11/2016

11

Serving as an Advisor

• Why I am an advisor?

• How I make a difference.

• What I would change if I could.

• My advice as you start a Patient and Family Advisory Council

Patient and Family Advisor Opportunities

HAL Advising

Story Telling

Speakers

Committees

Patient Education and Internal

Communications SimulationsOn-line Advisor

Short Term Projects

Council

Patient Shadowing

Quality & Safety

Rounding

Social Media Tips

Remember that what you say on social media stays on social media

Be smart about how you talk about the Advisor Program and MD

Anderson Cancer Center on social media

4/11/2016

12

PFAC Sustainability:• MD Anderson Partnering with Advisors• Orientation • Annual education • PFAC meeting structure• Annual advisor evaluation • Annual program evaluation-SWAT analysis

What you can expect – sustainability

To be accompanied by an employee to the first Advisor activity and to

have a de-briefing before and after the first activity.

Can request to have a de-briefing before and after any activity.

Can expect to have processes and terminology explained as needed.

Will be given the name and contact information for the lead of the activity.

Will be listened to and respected for personal insight and suggestions.

Can expect a safe environment to discuss concerns.

May be invited to attend educational sessions.

Key component to success

Communication

Follow HIPAA guidelines for confidentiality

Committees, advisor meetings, and other sharing opportunities should

be a safe place to talk about experience. Everyone should be

comfortable knowing the other members are not telling those they know

at home, school, or social media what we hear

Please do not identify doctors, nurses, or other staff members by name

when sharing a story that includes that person

We want to focus on the issue, not the person

Use personal experience to illustrate a point

4/11/2016

13

Standards – sustainability

The Patient Family Advisor will maintain confidentiality of patient and organizational sensitive information.

The Patient Family Advisor will attend required Advisor meetings and provide input through identified activities.

Participation is voluntary and may be withdrawn at any time with notice, by either party.

The Advisor position is a one year position, with an annual review providing renewal for an additional year. Renewal may be provided for up to three years.

The Patient Family Advisor will complete the PFA orientation and all required forms including but not limited to: HIPPA training, a confidentiality statement and a Code of Conduct statement.

What is Protected Health Information What is Protected Health Information (“PHI”)?

PHI is any individually identifiable health information that relates to

a person’s health care. For example, PHI includes health

information paired with any of the following: name, address, Social

Security number, recognizable photos, dates of service, date of

birth, contact information, and medical record numbers. PHI may

be electronic, paper, or spoken word. See “Confidentiality Policy”

(Policy # ADM0264). Even the simple fact that someone is an MD

Anderson patient constitutes PHI.

Health Information includesPHI is health information paired with identifying information. • Treatment;• Diagnosis;• Genetics; and• Patient status.Identifying information includes:• Name (incl. initials);• Date of birth;• Medical Record Number (MRN);• Treatment dates;• Contact information (address, fax, e-mail, phone);• Photos;• Account numbers; and• Social Security Numbers.

PHI is found almost everywhere; in medical records, billing records, appointment reminders, advertisements, publications, research databases, etc. HIPAA dictates how we use, disclosure, and protect PHI.

4/11/2016

14

New Advisor Signature FormsWrite your name on the manila folder tab

1. Protecting Patient Privacy Form

2. Confidentiality, Conflict of Interest & Non-Disclosure Agreement Form

3. Information Resources User Rights and Responsibilities Acknowledgement Form

4. Non-Employee Vetting Form

5. Patient and Family Advisory Program Orientation Acknowledgement Form

6. Patient and Family Advisor Program Preference Form

Work with the employees at your table to answer questions, complete and hand-in the

forms listed above in the manila folder: Last Name, First Name.

PFAC meetings – sustainability Monthly – 3rd Tuesday of the month 5:30 – 8:00

Dinner included

Standard agenda:

• Patient Story

• 2 presentations/projects 5 minutes each

• 2 small group breakouts – simultaneously

• Break

• Large group project or update for feedback – most recently EPIC feedback

• Committee report-outs

Institutional sustainability • Vice-President of Performance Improvement attends all

PFAC meetings

• President spoke at first annual celebration

• SAFTEY COMMITTEE - first Committee to have a PFAC member

• Internal Communications -partner

4/11/2016

15

Next Steps: Institutional sustainability

• Invite a different Executive leaders to speak at and attend a PFAC meeting

• Increase PFAC membership on institutional committees

• Internal Communications about PFAC/PFAP to employees and faculty

Innovation committee Communication of death policy and procedureUpdated visitor policyWhite boards updated to include daily patient goalNew thermostats in patient roomsNew mattresses in patient roomsCommit-to-sitBedside shift reportAccent modification class Safety Committee MemberNew Nurse Simulation labsFocus Groups for research surveys and education pieces Facilitated Facilities Inpatient room survey with patientsNew signage Patient education materials

Partial list of PFAC involvement results

At MD Anderson, everything we do

revolves around our patients and placing

patients and their families first.

So what does it mean to put them first?

It’s delivering on our promise of safe,

timely, effective, efficient, equitable, and

patient-centered care every day.

Patients story at top of a meetings

4/11/2016

16

Expected Outcomes of thePatient & Family Advisory Council

Improved communication

Improved provider-patient relationships

Improved quality of care/patient safety

Improved patient experiences of receiving/participating in care

More efficient use of resources

Improved provider satisfaction with providing care

Improved patient/health outcomes.

Agency for Healthcare Research and Quality (2012) Guide to Patient and Family Engagement

Patient and Family Advisor Program

0

10

20

30

40

50

60

70

80

Hours

Patient and Family Advisor Total

Volunteer Hours

0

20

40

60

80

100

2014 2015 2016

Number of Advisors

Founding PFAC Advisors

4/11/2016

17

Next…

Poster Session Presentations

4:00-5:00 PM

Foyer

Off Site Networking Reception & Dinner

6:00-9:00

Busses will transport attendees to Winspear Opera House

49

Patient and Family Advisory Council

TOOL BOX RESOURCES

Patient and Family Advisory Council Interview Guide

Candidate Name: ______________________________Date:__________________

Why would you like to participate in the Patient and Family Advisory Council?

Tell me about a positive experience you’ve had at the hospital.Can you recall a challenging or problem situation that you have encountered here and describe how you managed it?How have you handled a situation in the past when someone’s background or values were different than your own?What are two or three personal strengths you have when working in groups?The PFAC meetings will be held once a month on a weeknight. Are there any days of the week that would NOT work for …..you?Have you ever received services at one of our regional locations? If so, how frequently?

Reminders:We will be doing background checksIf a person isn’t selected, it isn’t because they aren’t “good” enough, but it is because diversity of the group is so importantDiversity = background, diagnosis, experience at MDA, gender, race, family type, socioeconomic status, educational background, age, etc.We will keep applicants in mind for potential opportunities for projects outside of the PFAC business meetings

Interviewer:_________________________________

4/11/2016

18

52

Table of Contents

Welcome LetterBeing a Patient and Family AdvisorThe Department of Patient Experience Structure: The Patient and Family Advisory ProgramPatient and Family Advisory Program OverviewPatient and Family Advisory Program Purpose StatementPatient & Family Family Advisor positon description Patient and Family Advisory Program Ground RulesWhat It Means to Be a Patient and Family AdvisorTips For How To Be An Effective Patient of Family Advisor: A Beginning List Communication Tool BoxPatient and Family Advisors - January 2016 Do the Right ThingVision, Mission and ValuesInstitutional Code of ConductPrivacy, Confidentiality, and Security Work EnvironmentYour Rights and ResponsibilitiesProtecting Patient Privacy (your copy)Confidentiality, Conflict of Interest & Non-Disclosure Agreement (your copy)Information Resources User Rights and Responsibilities Acknowledgement Contractor (your copy)Patient and Family Advisor Position DescriptionPFAC By-LawsPFAC Co-Chair Position DescriptionStrategic Plan Overview

Forms to sign and turn inProtecting Patient PrivacyConfidentiality, Conflict of Interest & Non-Disclosure AgreementInformation Resources User Rights and Responsibilities Acknowledgement Non-Employee Vetting FormPatient and Family Advisor Program Preference FormPatient and Family Advisory Program Orientation Acknowledgement Form

Patient and Family Advisory Council (Program) Orientation

53

Welcome Letter

PFAC Meeting Agenda Template -Example

4/11/2016

19

PFAC By-laws

PFAC By-laws continued

PFAC Co-Chair Position Description

4/11/2016

20

Patient and Family Advisor Position Description

59

Request A Patient and Family Advisor Form

60

First Assignment Check-off Form

4/11/2016

21

61

Letter to team lead when Patient Advisor added to team

Internal Communications