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Creating a Patient and Family Advisory Council:
A Toolkit for Pediatric Practices


Full Introduction and FAQ

In This Section:

Introduction
Background
How to Use This Toolkit
Frequently Asked Questions (FAQ)

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Introduction


Cristin Lind, a Program Associate and Family Leader for Massachusetts Family Voices, introduces NICHQ's online PFAC toolkit. Ms. Lind serves as a family faculty member for NICHQ's Massachusetts Medical Home Initiative and is a member of NICHQ's Board of Directors. Source: https://vimeo.com/56029160

Forward-thinking pediatric practices all over the country are forming patient and family advisory councils. As the “customers” of the practice, patients and families bring experience and expertise that can help enhance service delivery and improve overall quality. Practices that encourage, value and utilize family perspectives and experiences in planning for high quality medical care can accelerate their path toward becoming truly patient- and family-centered.

This toolkit is designed to help your pediatric practice build a system for listening to this feedback – by creating your own Patient and Family Advisory Council (PFAC). The kit provides step-by-step guidance on how to effectively engage family perspectives in the design of services and to improve overall quality in the delivery of those services. These resources will help medical practices ensure that meaningful dialogue is established and maintained and that services for families are responsive to their needs.

This toolkit is a product of the Family-to-Family Health Information Center at the Federation for Children with Special Needs, Mass Family Voices and NICHQ. Together, we have tapped into the extensive experiences of family members who are regularly supporting other families. In this regard, this toolkit is the result of peer-to-peer efforts to inform medical professionals and staff of practical ways to ensure the services families receive are high quality and on target.

Funding for this toolkit was provided by a Physicians Foundation grant to Massachusetts Health Quality Partners (MHQP).

Do you have feedback on the toolkit or suggestions to make it better? Let us know! Email us at communications@nichq.org.

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Background


Family experiences in pediatric practices vary considerably and the success of family engagement can vary as well. Most practices seek to be responsive, but may lack the resources or merely the expertise and tools to make this happen. The toolkit seeks to fill some of that gap.

Commitment to family involvement begins with top leadership who provide the guidance, flexibility and resources to ensure that family involvement is encouraged and proactively sought. It is not enough to simply invite family members to participate in a meeting. More context must be provided and deeper relationships created.

Meaningful family involvement is an ongoing process where interested and affected family representatives are consulted and included in the decision making of the organization. To be truly effective, family involvement in the PFAC should include:

  • A thoughtful process in which diverse family representatives in the midst of a sensitive environment are invited to express their satisfaction and concerns based on their personal experiences with the organization.
  • Assurances that everyone involved has adequate information and the necessary support to understand the materials being presented and make a meaningful contribution to the discussion.
  • Clarity on the roles and responsibilities of all council participants.
  • Clear processes for collecting information and supports to encourage full participation.
  • A plan to ensure that recommendations from the PFAC are considered and that regular feedback is relayed to those who participated.

We welcome you to explore the ideas and resources contained in this toolkit and wish you good luck in creating your own Patient and Family Advisory Council.

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How to Use This Toolkit


This toolkit will assist the practice to:

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Frequently Asked Questions (FAQ)


What are some specific things PFAC do?

In addition to providing feedback about their general experience as patients and families, PFACs can also complete hands-on work, act as a liaison between the practice in the community, and much, much more. The Institute for Patient-Centered Care provides an extensive list of PFAC annual reports and summaries of activities, including:

Our hospital or community health center already has an advisory council. How will our practice PFAC be different?
Practice and hospital PFACs are similar in their purpose - they are both used as a way to gather information from patients and families. Practice PFACs however can provide feedback to practice leadership on a more specific level. Practice PFACs can sometimes function more like on-going focus group and allow a practice to drill down into consumer experiences in a way that hospital PFACs cannot. Practice leadership may also be able to provide feedback to their own practice PFAC members in a way that they cannot to hospital PFAC members.

Hospital and practice PFACs also often differ in their available personnel and financial resources. For that reason, practice PFACs may not require or be able to maintain the same formality of structure such as bylaws, officers, application processes and term limits.

Representatives from Holyoke Pediatric Associates and South County Pediatrics, two practices participating in NICHQ's CHIPRA Massachusetts Medical Home Initiative, discuss their experiences in creating a Patient and Family Advisory Council (PFAC).
Source: https://vimeo.com/62278608

What are some other ways we can get patient and family feedback about their experience in our practice?
PFACs are but one in a spectrum of structured activities designed to capture the voice of the consumer. Other ways include:

  • Patient experience surveys and market surveys
  • Focus groups and in-depth interviews
  • Information forwarded by customer contact associates
  • Individual patient and family communications captured through emails, letters and contact centers
  • Suggestion boxes
  • Customer-generated and social media
  • Patient/family leadership involvement on quality improvement teams
  • Patient/family faculty or training in professional development
  • Discovery Shopping or shadowing patients on visits (watch the video below about the “Footsteps of the Patient” exercise)

Developing a strategy that systematically captures patient and family feedback in a variety of ways will help your practice be responsive, provide family-centered care, and be more targeted in your improvement initiatives.

"Walking in the Patient's Footsteps" is an innovative program that Dr. Shoma Stout started at the Revere Family Health Center in MA that allows a medical student to shadow a patient through their primary care visit to get a true sense of what the patient experience is. Source: http://www.youtube.com/watch?v=u5vhYBVpZ4w


What are some things we should encourage patients/families to think about when deciding whether to join our practice's PFAC?

Joining a PFAC can be an opportunity for patients and families to use their personal experiences to improve your practice for themselves as well as others. Depending on your practice’s PFAC structure, participating in a PFAC may require a commitment of a patient's or family's time and energy. Here are some questions that can help patients and/or families decide if joining your practice’s PFAC is right for them:

  1. Am I pleased at the prospect of providing information to the practice about how their policies affect my family?
  2. Do I believe I can suggest some variations on how they do things that will be helpful to others?
  3. Am I able to separate out my views about my own child/ren from overall issues and themes?
  4. Do I want to be a good role model to help other parents express themselves in a comfortable way?
  5. Can I commit the required time?
  6. Do my viewpoints reflect my experiences as a family member of a child or youth with special health care needs and/or a family member of typical children?

If your patients or families want to read more about becoming a family leader, the article “Who You Gonna Call? contains some helpful tips and questions for reflection.

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