A Toolkit for Pediatric Practices
Step One: Assess Practice Readiness
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A Patient and Family Advisory Council (PFAC) can provide a critical feedback loop that enables practices to enhance service and improve quality. Best practices in patient and family involvement show that engaging patients and their families in meaningful ways improves services, makes service delivery more responsive to the needs of families, and ultimately saves resources. Strong family involvement can lead to better service delivery and improved health outcomes.
A thriving PFAC requires some planning and effort to get it off the ground, even before a single member is recruited. Every high-functioning, engaged PFAC needs to receive support and resources from practice leadership and staff early to ensure its success.Back to Top
Your practice may be considering creating a PFAC for a number of reasons. You may feel that a PFAC is an effective way to listen to your patients and families talk about their experience with your practice. You may also be in the process of transforming your practice into a medical home using guidelines or tools like NCQA Medical Home Standards or the Center for Medical Home Improvement’s Medical Home Index. Both require or encourage that practices demonstrate continuous quality improvement initiatives and patients and families are part of this process.
Regardless of why your practice is considering a PFAC, creating one requires the commitment of resources from your practice, leadership and staff. You will benefit from assessing your readiness in order to determine what resources your practice possesses and what it lacks.
We welcome you to explore the ideas and resources contained in this toolkit and wish you good luck in creating your own PFAC.
Leadership Readiness Assessment
Use this self assessment as the basis for a conversation among leadership to determine your practice’s level of readiness for launching a PFAC. Consider to what degree the statements on the assessment are true for your practice.
Staff Readiness Assessment
Most staff and providers are both excited and nervous about the idea of asking patients and families for direct feedback about their experience. Setting aside time at a staff meeting to discuss a possible PFAC early in the process is critical to future engagement.
Some staff resistance may be due to a lack of information about what PFACs do. This video from MaineGeneral’s PFAC may be helpful to show staff to give them a general vision of how patients and families are getting involved at other organizations.
Ultimately, acknowledging and assuaging concerns is critical to meaningful family-professional partnership. This self assessment contains some questions that can facilitate an open, honest conversation.
This video, from MaineGeneral’s PFAC, may be helpful to show staff to give them a general vision of how patients and families are getting involved in PFAC's at other organizations.
Once your practice has determined that it is ready to support a PFAC, a team can be convened to manage the launch. One practical way to do this is to create a small PFAC launch team which includes practice members who have the authority to commit resources and the time available to do the necessary work to get the PFAC off the ground. This often means including someone in a leadership role as well as someone with administrative expertise.
Authentic patient and family engagement means including them not only in the evaluation of your practice, but also in the planning and implementation of the PFAC launch itself. The earlier the patient and family voice is included in the process, the more authentic your PFAC will be.
Creating a PFAC launch team that includes leadership, staff and a family member is one way you can ensure that both adequate resources and a genuine patient and family perspective are present right from the start.
Here are some possible roles and responsibilities for a PFAC launch team.
A leader of the practice who values family-professional partnerships.
- Confirms practice readiness and supports the work of the PFAC liaison (see below) by securing financial and personnel resources and negotiating the removal of barriers with other leaders in the practice.
- Defines the purpose of the PFAC and ensures its alignment with other leadership activities.
- Determines the general structure of the PFAC.
- Advocates for the PFAC with staff and leadership and keeps leadership informed about PFAC activities and accomplishments.
- Helps to recruit patients and families. Provides PFAC launch team with data on practice demographics to support the recruitment of PFAC members who reflect the culture and experience of all patients and families.
- Ensures that recommendations of the PFAC are implemented in practice policy and works with PFAC leadership to communicate improvements back to PFAC members.
- May attend PFAC meetings.
A staff member of the practice who values family-professional partnerships.
- Acts as an active link between the PFAC and the practice.
- Works closely with the PFAC champion to launch and sustain the PFAC.
- Coordinates the launch of the PFAC: creates recruitment materials and plans, recruits and selects interested members.
- Prepares and distributes pre-meeting materials.
- Books meeting space and coordinates logistics, such as parking and catering needs.
- Supports the PFAC chair or co-chairs in the planning and facilitation of PFAC meetings.
- Works with PFAC chair or co-chairs to identify training needs and materials for members and staff.
- Creates a budget for PFAC activities.
PFAC Launch Partner(s)
One or more patients or family members who have some family leadership or advocacy experience and value family-professional partnerships.
- Assists the PFAC champion and liaison in launching the council and represents the patient/family perspective until a chair/co-chair is selected by the PFAC.
- Reviews or co-creates the recruitment material, recruitment plan, selection process and first meeting agenda “through the eyes of the patient/family,” to ensure that they are patient- and family-centered.
- Functions as the family voice in facilitating early meetings until a chair/co-chair are identified. May transition into role of chair/co-chair officially after PFAC launch.
There is no single model for a successful PFAC. They vary in the formality of their structure and size, as well as in their frequency of meetings. Some PFACs are highly structured, with bylaws, officers, term limits, applications and a formal interview process. Others are much less structured, functioning more as a series of stand-alone focus groups open to any patient and family member who wants to attend. However, a focus group, while helpful, is not a substitute for the establishment of a PFAC. It is possible to start with a less formal group and let it organically evolve. Our goal with this toolkit is to urge practices to move toward full patient and family engagement and quality improvement strategies.
As your practice assesses which PFAC structure is right for you, here are a few considerations:
Informal, Focus Group-Style PFAC Structure
- Requires less work to get it off the ground
- Easier to become more structured over time than vice versa
- Can engage more patients and families
- Open to any patient/family member; no need to turn anyone away
- Ensures a wide range of perspectives if promoted and facilitated effectively
- Lower level of engagement from members
- Difficult to sustain a conversation with same members over time
- Some time spent on orientation/introductions at every meeting
- Informal nature makes it easy to put off as a practice priority
- Easy to skip important steps
Traditional, Formal PFAC Structure
- Creates deeper, longer term relationships with and among members
- Allows members to increase their skills and knowledge of your practice
- Clear guidelines and term limits
- Opportunity to screen for particular skills and traits
- Accountability to bylaws ensures that meetings happen regularly
- Opportunity for thoughtful planning
- Requires more work to launch
- Engages fewer patients and families
Transitional Informal-to-Formal PFAC Structure
- By launching informally and becoming more structured over time, as capacity and leadership are identified, this structure shares the advantages of both models
- May require more active leadership to facilitate the ongoing transition
The PFAC purpose and structure that is right for your practice will be based on your practice’s resources and needs as well as the needs of your patients and families. The PFAC champion is likely in the best position to ensure that the PFAC aligns with the practice’s goals and vision. He/she may also be able to best assess the practice capacity and guide the process for determining your PFAC structure. Other members of the PFAC launch team and the practice can also be asked for feedback and ideas.
This worksheet contains some questions to help you identify your PFAC’s purpose and determine the right PFAC for your practice. Let the answers to these questions be your primary guide when creating a purpose statement for you PFAC. A few examples from established PFACs are available below for reference.
Purpose Statement: The Massachusetts General Hospital for Children’s Family Advisory Council (MCHC PFAC)
The Massachusetts General Hospital for Children’s Family Advisory Council is dedicated to fostering the partnership of parents, children and professionals working together to ensure a climate of responsiveness to the needs of children and their families in all areas of care delivery within Massachusetts General Hospital. The council’s goals are to align with the broader Mass General/MGHC goal of enhancing patient-physician communication by fostering family-centered communication and promoting the principles of patient- and family-centered care:
· Dignity and Respect: Honoring patient and family perspectives, choices, knowledge, values, beliefs and cultural backgrounds.
· Information Sharing: Communicating and sharing complete, unbiased, accurate and timely information with patients and families so they can effectively participate in care and decision-making.
· Participation: Encouraging and supporting patient and family participation in care and decision-making at the level they choose.
· Collaboration: Partnering with patients and families in the delivery of care; policy and program development and evaluation; healthcare facility design; and, professional education.
Purpose Statement: BJC HealthCare Patient and Family Advisory Council
To serve as a formal mechanism for involving patients, family and staff as partners for policy and program decision making in healthcare settings.
Purpose Statement: The Missouri Baptist Medical Center Patient and Family Advisory Council
The Missouri Baptist Medical Center Patient and Family Advisory Council will be a partner with the Missouri Baptist Cancer Center team, involved in decision making and committed to creating an environment of safety, dignity, respect and honesty to assure the very best for patients and families.
This worksheet contains some additional questions you should be prepared to answer before you begin reaching out to patients/families.
|• For practices that have decided to launch a less formal PFAC, skip ahead to Step 2 of the PFAC Toolkit.
• For practices which have decided to launch their PFACs through a more formal structure — including bylaws and an application process — please continue to the end of Step 1.
Most PFACs working at the hospital level require bylaws as a way of establishing transparent guidelines, procedures and expectations. On the practice level, it can be useful to create bylaws as a way of clarifying and communicating expectations to patients and families who are thinking about becoming members. If your PFAC is essentially organized as a series of open-invitation focus groups, you may not need them at first, or at all.
If you do decide to create bylaws, here are some helpful guidelines.
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|IDEA TO TRY
Devote an all-staff meeting to discussing development of a Patient and Family Advisory Council using the resources and tools mentioned above.
1. Explain the benefits. What can a PFAC help us achieve that we can’t do without them?
2. Share this video from MaineGeneral’s PFAC and/or show web reports of other organizations to help staff understand what a PFAC does.
3. Encourage an open, honest conversation on concerns using the Staff Readiness Assessment.
4. Discuss the PFAC’s purpose and structure using the worksheets in Clarifying the Purpose of Your PFAC. Acknowledge that concerns may not have been entirely addressed, but ask staff to answer these questions above as if they were.
5. Circle back to unresolved concerns. Now that you have some clarity on the purpose and structure of your PFAC, have some of these concerns been resolved?
6. Solicit or introduce PFAC launch team members and describe what they will do.