IBD Patient Family Advisory Council Bylaws

Vision

To co-produce the highest level of care for the pediatric IBD patients and families at Children’s Mercy.

Mission

Families and IBD health care providers working together to improve outcomes and create exceptional service.

How we do it

1. Consistent communication between the IBD PFAC and the IBD clinical team.
2. Provide patient and family perspective on policies and procedures, service excellence, and exceptional education for patients and families in both inpatient and outpatient settings.
3. Maintain a fresh and engaged IBD PFAC.
   
   

Application process

In order to achieve a diverse representation and work towards our mission the IBD PFAC has created an
application process for potential members.

1. Visit the IBD Patient Family Advisory Council page and scrolls down to "Application."
2. Children's Mercy will review the Application and Initiate Volunteer Requirements.
3. An IBD PFAC member will reach out to the new parent applicant.
   
   

Size

The council will strive for membership of no less than 8 family members and no more than 13 family
members at any given time. Children’s Mercy staff are non-voting members.

Terms

• Commit to serve on the IBD QI Patient Family Advisory Council for a minimum of 2 years.
• Terms begin at approval of application.
• Members will consist of parents and caregivers of child/children:
  • Who receive services at Children’s Mercy.
  • Who have transferred to adult care within the last 2 years.
    
    

Attendance

Consistent and active attendance is vital to the purpose of the Council. Each member is strongly encouraged to attend and participate in all PFAC meetings and conference calls. It will be assumed all members will be in attendance. If a member cannot attend, out of courtesy for the group he/she will notify the Parent Chair or Co-Chair as soon as possible. Meetings are subject to be canceled or rescheduled if a majority of members are unavailable. A quorum of 50% either in person or electronically (or a combination) is required to vote on issues. All decisions that require a vote need a simple majority to pass.

Member expectations

The council will serve as an action oriented group, with expectations of time investment outside of the meetings. However, it is important to note that this council will not meet the needs and capacity of a support group.

Members will:

• Respectfully listen and tactfully discuss ideas, issues and concerns.
• Respect the privacy and confidentiality of council members, their families and all staff.
• Actively participate with expectations of time investment outside of the meetings.
  
  

IBD PFAC officer positions

1. Chair
2. Co-Chair, when available
   
   

Officer elections

1. Each May will include:
   a) Opt-out discussion where any PFAC member may decline to be nominated for officer positions.
   b) Optional motion by any PFAC member to retain the current Chair and Co-Chair for another year. This motion must pass by at least a ⅔ vote.
2. First week in July, IBD PFAC Staff Liaison will call for nominations from the council for the Co-Chair position.
3. Council members can nominate themselves or another member for the Co-Chair Position privately to the IBD PFAC Staff Liaison.
4. IBD PFAC Staff Liaison will notify each nominee to assess willingness.
5. IBD PFAC Staff Liaison will send an email to all council members to vote.
6. Vote will be announced to the IBD PFAC via email once the vote is complete.
7. At this time, the previous Co-Chair will become the new acting Chair of the IBD PFAC.
   
   

Attendance at Clinical Team QI meetings

• PFAC members will all be given the opportunity to attend Clinical QI meetings. These meetings are held on the 2^nd Tuesday of every month from 12 -1:30 p.m. via Teams virtual platform.
  ● PFAC members will rotate attendance at these meetings.
  ● PFAC members will:
  • Attend the clinical QI meeting on time.
  • If unable to attend, notify the appropriate staff members and PFAC members as soon as possible.
  • Actively participate in QI discussions as parent partner.
  • Represent the voice of ALL (600 plus) IBD families.
  • Refrain from asking personal medical advice.
  • Provide an update to the PFAC by Friday of the QI meeting week.

PFAC operational positions and descriptions

Chair

• Set meeting agenda.
• Send meeting agenda to PFAC, Clinical Team, and Patient and Family Engagement staff prior to PFAC meeting.
• Organize and lead meetings.
• Define action items.
• PFAC representative at official meetings when needed.
  
  

Co-Chair

• Support the Chair in his/her duties.
• Serving as acting Chair during the Chair’s absence.
• Record minutes at PFAC meetings.
• Send PFAC minutes to Clinical Team and Patient and Family Engagement staff.
• Collect volunteer hours every month and send to Patient and Family Engagement staff member assigned to IBD PFAC.
  • Use a consistent process to collect volunteer hours from All PFAC members.
  • Email hours by the 5th of each month.
    
    

Projects

As the IBD QI PFAC identifies areas of improvement these critical steps must be followed:

1. Improvement Idea must Pass the IBD QI PFAC Litmus Test:
   a) Can the idea produce large scale impact for 600 IBD kiddos and families?
   b) Will the idea inspire support from the medical team?
   c) Does the idea fit within a QI framework, which requires small changes to test?
   d) Is the idea a burden to the medical team?
   e) Are we willing to volunteer hours to help implement the idea?
2. Present the project framework to the clinician members of the QI team for their input.

Project Specific Committee

At the onset of a PFAC Project, a Lead Parent will be identified.

The Project Lead will:

• Organize and lead committee meetings if needed.
• Define action items.
• Communicate directly with Children's Mercy staff regarding the project.
• Provide updates to the PFAC.
• Members may volunteer to participate in project-specific committee.

Members who agree to be involved in a project focus group are agreeing to:

• Regular, consistent communication about the project.
• Represent the best interests of the PFAC and 600 IBD families at CM as decisions are made.

Any articles of these guidelines may be added, deleted or amended by majority of the vote of at least 2/3 of the council.

Revised Aug. 25, 2021