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Forming a Patient and Family Advisory Council (PFAC)Patient and family perspectives can help you achieve more patient-centered care in your practice

Learning Objectives
1. Describe what a Patient and Family Advisory Council (PFAC) is and how this partnership can improve one's practice
2. Discover the importance of developing a business case for PFAC and engaging the appropriate individuals to serve on the planning committee
3. Explain the purpose of an action plan and the areas the PFAC may advise you
4. Identify how to initiate improvement projects with PFAC members and track the results of PFAC work
0.5 Credit CME
How Will This Module Help Me?

  1. Describes 6 STEPS to form a Patient and Family Advisory Council (PFAC).

  2. Answers frequently asked questions about PFACs.

  3. Shares tools and resources to help you and your team advance patient and family engagement strategies.

Introduction

The goal of patient and family engagement (PFE) is to create an environment where patients, families, clinicians, and other team members collaborate as partners to improve the patient experience and quality of care.1 Patient and Family Advisory Councils (PFACs) provide a proven approach for health care systems and practices to partner with patients and families to provide guidance on how to improve the patient and family experience. Health care organizations have embraced PFACs to learn from their patients' diverse perspectives and lived experiences and to integrate their ideas into service delivery and quality improvement efforts. This approach can positively impact care and assist with strengthening the delivery of patient- and family-centered care.

The term patient- and family-centered care emphasizes collaboration with patients and families of all ages, at all levels of care, and in all health care settings. Families are essential to patients' health and well-being and are allies for quality and safety within the health care system. Family members are more than surrogates to be called on when a patient is unable to make decisions on their behalf; they are essential members of the care continuum and care-giving team. Patient- and family-centered care acknowledges that social isolation is a health risk factor and hospital and ambulatory care policies and practices should not separate patients and families in caregiving and decision-making.2

Six STEPS to Form and Begin Working With Your Patient and Family Advisory Council (PFAC)

  1. Ensure Leadership Support.

  2. Create a PFAC Planning and Launch Team.

  3. Invite, Interview, and Select a Diverse Group of PFAC Members.

  4. Launch and Support the PFAC.

  5. Initiate the PFAC's First Project.

  6. Track the Results of the PFAC and Celebrate Successes.

Step 1 Ensure Leadership Support.

Generating support from leadership is the first step to developing and sustaining a successful PFAC. Identifying and involving stakeholders who will be involved with the efforts from the start assures buy-in, builds a foundation for successful implementation, and solidifies the value in creating a PFAC. It also aids in action planning later in this process.

Most practices and health care systems seek to be responsive to the needs of their patient population, but may lack the resources or the expertise and tools to make this happen. Commitment to patient- and family-centered care begins with top leadership who provide the guidance, flexibility, and resources to ensure that this collaboration is encouraged and proactively sought. It is not enough to invite family members to participate in a meeting; more context must be provided and deeper relationships created.3

Once leadership support is obtained, consider using a leadership readiness assessment to take a comprehensive look at your practice to determine where you can utilize a PFAC to its full potential. The assessment can serve as a baseline measurement to track results as you implement meaningful PFAC interventions in your practice.

Quiz Ref IDConsider these items when performing your self-assessment to identify opportunities for integrating PFAC input:

  • Clinician and team willingness to be involved in a multidisciplinary, collaborative approach that includes patients and families.

  • Defining the anticipated role, responsibilities, and expected contributions of PFAC advisors.

  • Established processes and protocols for making changes to help identify who and what influences decisions about advisor involvement. Information about the team's experiences, ideas for changes and improvements, and questions or concerns about advisor participation. This can help prepare everyone to partner with advisors.

  • Evidence from surveys or the patient panel to determine which elements of their experience contribute to whether they remain with the practice.

Box Section Ref ID

Q&A

  • What are the benefits of forming a PFAC?

    PFACs have resulted in the following benefits for practices and health systems:

    • Ensures that patient, family, and community perspectives are represented in practice operations, program implementation, and evaluation. PFACs provide meaningful feedback on practice policies and workflows from the patient and family perspective, particularly when PFAC members reflect the diversity of the patient panel and community.

    • Creates alignment with the core principles of patient-centered care and may help meet the criteria for Patient-Centered Medical Home (PCMH) accreditation.

    • Provides the care team the opportunity to work in partnership with patients and families to improve the patient experience, outcomes, and quality and safety. This supports team morale by contributing to the joy and meaning health care workers experience when patients feel they have optimal treatment results and know their voices are being heard.

    • Using guidance from the PFAC, educational materials to support patient self-management, medication adherence, and understanding of treatment plans can be improved and targeted to the community.

    • Alignment with performance-based reimbursement and alternative payment models.

    • Improvements in patient satisfaction ratings, including “likeliness to return” and “willingness to recommend.”

    • Differentiation from practices that do not utilize a patient- and family-centered approach to care.

  • How do I discuss PFACs with my colleagues who have doubts about a PFAC's value?

    One way to generate buy-in is to ask them to participate on the planning and launch team. They may be pleasantly surprised to be included in the process. As they weigh in on the role of the PFAC, review applications for membership, and interview applicants their beliefs and attitudes usually shift. Another idea is to hold a meet-and-greet session as one of your first PFAC meetings so everyone can become acquainted.

  • Sometimes I hear colleagues talk about “person and family” when discussing engagement. How is this different from “patient and family”?

    In 2015, the Centers for Medicare & Medicaid Services (CMS) signaled a shift in language from using “patient” to using “person” in recognition that health care practitioners are in relationships with “whole persons.” This acknowledges that in the same way that health care practitioners are not “providers” of health care, neither are patients “users or consumers” of health care. Patients are whole individuals, whose ideas and insights draw on their own personal, professional, and lived experiences. PFACs exemplify the importance of this refinement in language because PFAC members work as advisors to the care and practice team, not only as patients at the point of care. PFAC is now an acronym used interchangeably to abbreviate both “person” or “patient” and family advisory council.

Step 2 Create a PFAC Planning and Launch Team.

Once you have leadership support and you have determined that you are ready to launch your PFAC, the next practical step is to develop a small team to manage this process. Members of the Planning and Launch Team should include 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. Including at least one patient or family member in the Planning and Launch Team is one way you can ensure that a genuine patient and family perspective is present right from the start.

Primary Duties of the Planning and Launch Team:

  1. Create and Implement a Recruitment Plan.

  2. Design the PFAC Structure.

  3. Develop an Initial Budget.

A. Create and Implement a Recruitment Plan

Once you develop your Planning and Launch Team, create a recruitment plan so that you have enough time to publicize your PFAC. Whether you're trying to recruit patients and families to apply for PFAC membership or to attend an informational PFAC meeting, you need to get the word out. As a team, brainstorm on all the possible ways you can invite patients and families to join PFAC activities. Using multiple outreach techniques will ensure that your message reaches a wider audience.

In your recruitment materials, be sure to use simple and welcoming language that is easy to read. Consider having it translated into languages that reflects the patients in your community.

Open recruitment methods to select and retain people to serve on your PFAC include:

  • Outreach to the community via mailings, email blasts, or messages posted to your patient portal.

  • Use of your practice's monthly mailing, your website, or other marketing materials.

  • Holding a “town hall”-type event to invite questions from potential advisors.

  • Advertising at or attending community events.

B. Design the PFAC Structure

There are many ways to structure and staff your PFAC. Some are formal with explicitly assigned roles, while others may provide general feedback on various internal projects. Generally, most PFACs are a maximum of 12 members and 1 chairperson.

C. Develop an Initial Budget

Sustaining and running a PFAC takes effort and resources. At a minimum, the budget should include the costs to coordinate the PFAC, a meal or refreshments served at each meeting, mileage reimbursement for travel to the council meetings, printing materials, and any staffing costs. Plan for compensation of time, expertise, and any associated expenses for patients and families.

You may also consider sending individuals to attend conferences to learn more about being a PFAC Advisor, and the costs associated with attendance and travel.

You may also want to budget for other ways to show appreciation for PFAC advisors, such as:

  • Logo tote bags, pens, or lanyards.

  • Letters of thanks and appreciation from the organization's president.

  • Annual meeting with organization leadership to discuss goals and achievements.

  • Annual celebratory dinner with recognition of goals and work accomplished.

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Q&A

  • Is the planning and launch team dissolved once the PFAC is in place?

    Not necessarily. Once the PFAC is established, some team members may be interested in transitioning to helping at PFAC meetings or serving as members of the PFAC itself.

  • Can you share examples of different ways to structure and staff a PFAC?

    There are many ways to structure and staff your PFAC. This will depend on your experience level, the size of your practice, and scope of the PFAC's activities. Generally, most PFACs are a maximum of 12 members and 1 chairperson.

    If your practice has just one location, it probably makes sense to start with a PFAC that advises on multiple, and perhaps all, aspects of the practice. However, some practices prefer a more service-line approach; this will depend on the goals of the PFAC. Examples include PFACs that are focused on diabetes care, management of HIV, or the well-being of seniors.

    If your practice has multiple locations, consider developing a PFAC for each location—each with a common set of goals and a similar structure. You might also consider a regional PFAC whose membership is made up of patients from a county or other geographic area that is defined by a common sense of community or set of interests.

    Hospital-based PFACs may benefit from state and federal confidentiality provisions. Practice-based PFACs can benefit from federal protection from discovery if your practice participates as a member of a federally certified Patient Safety Organization. This can be helpful to promote complete and thoughtful discussions. Additionally, some state privacy and confidentiality laws may go beyond HIPAA; these criteria will depend on the state in which you reside.

Step 3 Invite, Interview, and Select a Diverse Group of PFAC Members.

Now that you have developed the foundation for a PFAC, your Planning and Launch Team is ready to reach out to patients and families.

To develop your PFAC successfully, follow these steps, described in further detail below:

  1. Clarify PFAC Membership Expectations

  2. Commit to a Diverse Representation of Patients and Families

  3. Develop Advisor Qualifications

  4. Find Potential Advisors

  5. Hold a PFAC Advisor Information Session

  6. Select Advisors

A. Clarify PFAC Membership Expectations

Understand your expectations of commitment before you start asking for participation. Clearly communicating expectations can help avoid unnecessary conflict and confusion. For example, a document similar to a job description outlining the expectations can help both your practice and the applicants.

B. Commit to a Diverse Representation of Patients and Families

Throughout the process of recruitment, it is important to have personal, individual interactions with potential advisors. Many advisors report that personal interaction is the most influential factor in helping them decide to become an advisor.

Since the essential function of the PFAC is to provide feedback, it's critical that you make every effort to include patients and family members who represent your entire practice. Allowing advisors to define what constitutes a “family” ensures that all perspectives are included. For example, this might include parents, guardians, grandparents, foster parents, or other caregivers.

There are many types of diversity, including gender, race, culture/heritage, age (of patients and of family members), language, socio-economic background, disease or disability, family structure, sexual orientation, religion, and educational level(s).

Consider including your young adult and youth patients. You could set aside one PFAC meeting to focus on teen perspectives. Some practices create special Teen PFACs to ensure that their voices are heard.

C. Develop Advisor Qualifications

While there are no special qualifications or expertise necessary to be a patient or family advisor, there are a number of leadership and collaboration skills that have been identified as crucial to success on advisory councils.

Potential PFAC member should:

  • Represent a broad cross-section of your patient and community population

  • Be willing to talk about their experiences and can effectively share insights in ways that others can learn from

  • Have the ability to see beyond their own personal experiences

  • Demonstrate a passion for improving health care for others, and show concern for more than one issue or agenda

  • Speak comfortably in a group with candor

  • Have the ability to listen well, respect the perspectives of others, interact with many different kinds of people, work in partnership, and bring a sense of humor

D. Find Potential Advisors

Remember that the most effective method of recruiting advisors is with a personal invitation. In conversation, make sure to describe what a patient and family advisor is and how to get involved.

To identify potential advisors, consider patients and family members who have:

  • Demonstrated an interest in being actively involved in their care or the care of their family member.

  • Provided constructive feedback in the past.

E. Hold an PFAC Advisor Information Session

Before patients and family members can decide whether or not they want and are ready to serve as advisors, they need to understand the responsibilities associated with the role. The staff liaison can hold an information session for potential advisors to cover topics that are important for PFAC Advisors to know, to learn what might prevent them from engaging, and to identify what kind of training and support you will need to provide.

F. Select Advisors

Patients and family members who are interested in serving as advisors should complete an application and interview process. Because PFAC membership typically requires a 1- to 2-year commitment, all potential PFAC members should be interviewed by the staff liaison and the PFAC Champion. Select additional interviewers as appropriate. Interviews can be conducted in person or by telephone.

Generally, most PFACs are a maximum of 12 members and 1 chairperson. Once you have made your selections, inform all applicants about selection in a timely manner. Not following up promptly with applicants may lead them to think they were not selected or needed. If there is not an appropriate match at the time, extend the invitation to explore future options for serving as an advisor.

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Q&A

  • What defines a PFAC “advisor”?

    Individuals who volunteer their time and work in collaboration with the care team on a regular basis are considered advisors.

  • Who should be involved in the recruitment process?

    Any care team member may recommend candidates for the PFAC. You may also rely on your health coaches, community health workers, or community groups to identify perspective participants. Reaching out to patients and family members for their recommendations is also beneficial.

  • How should we interview and recruit care team members who want to participate on the PFAC?

    Any team member passionate about PFE should be encouraged to apply, regardless of their job description. The application and interview templates may differ slightly from those developed for community member applicants.

  • Who ultimately has the authority to confirm or deny potential advisors?

    The PFAC Planning and Launch Team usually makes recommendations to leadership. Ultimately, your physician leadership should be part of making decisions about who to appoint to the PFAC.

  • How can I encourage diversity as we recruit PFAC members?

    Here are some ideas:

    • Ask patients and families which accommodations would allow them to attend. Remove as many barriers to participation as possible. For example, some PFAC members may request childcare, parking vouchers, or reimbursement for time and travel expenses.

    • Translate the invitation and recruiting materials into the languages of your patient population. Consider making arrangements for interpreters to attend your PFAC meetings.

  • What are some other suggestions for identifying potential advisors?

    • Enlist the support of clinicians and staff. Ask clinicians and other members of the care team to provide the Planning and Launch Team with the names of potential advisors.

    • Distribute recruitment brochures. Place advisor recruitment brochures in easily accessible locations. These brochures can also be included in informational materials, welcome packets, or patient satisfaction survey mailings.

    • Review letters or emails from patients and family members to identify individuals who have provided constructive feedback in the past.

    • Advertise opportunities at support groups or other patient meetings. Distribute recruitment materials at patient education meetings and support groups within the health system.

    • Work with patient representatives, ombudsmen, and other team members, such as social workers and clergy, to identify potential advisors.

    • Advertise opportunities on the practice website. Work with your marketing department to create a page on the website that contains information on advisory opportunities. Include the recruitment brochures and advisor application.

Step 4 Launch and Support the PFAC.

At the launch meeting, begin with introductions of each member and start with a question that encourages discussion of inspiration and motivation, such as, “What brings us here?” Orientation to the practice and the role of the PFAC can be achieved with a short overview of the practice mission and the role of the PFAC.

You may also cover logistics of parking, future meeting dates and times, or other upcoming important dates for the practice. Other common exercises include taking a group picture to celebrate the event. As members join the PFAC in the future, plan for time to orient them as well.

One of the first tasks of the PFAC will be to develop a charter and action plan.

Develop a Charter. To develop an effective partnership, PFAC members should be well acquainted with your organization's mission and goals, the need for confidentiality, and their advisory role. In collaboration with your team liaisons, the charter should align with the mission and goals of the practice.

Your PFAC charter will serve as a guide for your practice and the council. Your charter should include:

  • Guiding principles for the PFAC, such as a covenant for how members should interact respectfully with one another and practice staff.

  • Clear purpose for the PFAC.

  • Clear roles for PFAC members.

Create an Action Plan. Just as with other quality improvement initiatives, it is important to lay out a long-term vision while planning smaller action steps. This will help maintain momentum and identify meaningful immediate opportunities for advisor input. Quiz Ref IDYour action plan should include goals, measures of success, and a timeline.

Box Section Ref ID

Q&A

  • How often should the PFAC meet to discuss and complete projects?

    Most PFACs meet once a month, with some exceptions during summer vacation or winter holiday months. If your PFAC takes on specific projects, they may have different timelines. It is good to start with at least one project where progress can be made over a few months.

  • Do all meetings need to take place in person?

    In-person meetings are the optimal format to maintain engagement and momentum, especially at the beginning as members get to know each other. PFACs increasingly are experimenting with accommodating members who need to participate remotely by telephone or webinar.

  • As a practice leader, what's my role in the PFAC's work?

    An important role of physicians or other practice leaders is to show support and enthusiasm for the PFAC. Clinicians and other practice team members also have expertise that differs from community members. Physician engagement is deeply respected and appreciated by the patients, who know how hard their physicians work and how limited their time can be.

  • How do I make the PFAC aware of our budget constraints so that we don't end up with unwieldy projects?

    Be honest about time or resource limitations. You can do so without sharing private business information. Remember that this is a journey you are taking with your PFAC partners. When PFAC members are aware of and understand limitations, they will adjust their recommendations if they feel their work adds value to the practice.

  • How do I make sure that the advisors respect confidentiality?

    Respecting confidentiality should be part of the PFAC charter and expectations, expressed as a covenant that members have with one another. We also recommend that all participants sign a confidentiality agreement to emphasize its importance, regardless of whether you intend to share clinical information as part of their work. This should also be discussed in the HIPAA training, as well as the potential inclusion of Business Associate Agreements.

    According to Health and Human Services, HIPAA guidelines typically require that entities and business associates covered by HIPAA enter into contracts or agreements with their business associates to “ensure that the business associates will appropriately safeguard protected health information.”

Step 5 Initiate the PFAC's First Project.

Practice leadership or the PFAC Planning and Launch Team may have already identified issues or challenges they want to explore further with the advisors. Early meetings may benefit from presentations such as getting to know practice leadership, an overview of a specific workflow process, or bringing the PFAC patient-focused material to review. These presentations help to build a sense of community.

Once the PFAC is formed, brainstorm ideas to direct the group towards a common purpose. Consider at least one project that could be a “quick win” to build group momentum. Popular choices include:

  • Refining patient education or informational materials.

  • Improving user experience with the electronic patient portal.

  • Reducing wait times in your office.

  • Enhancing communication issues between patients, families, physicians, and other members of the care team.

Bigger issues that you may wish to consider—because these concerns are familiar to most and understanding patient views on these topics is crucial to improvement—include improving medication adherence, preventing infections, and preventing falls.

Box Section Ref ID

Q&A

  • How do I initiate this brainstorming session?

    Quiz Ref IDHere are several ways to kick off your discussion:

    • Use appreciative inquiry principles, which uses positive, future-oriented questions to generate excitement and creativity. Asking, “What works well here?” or “What should we be doing more of?” are meaningful ways to break the ice and approach the subject of improvement.

    • Use Lean methodologies, such as “go and see” or “walk about” approaches to look at your practice from the perspective of your patients and their families.

    • Review patient satisfaction surveys together. Find positive comments and ask the team “How do we get more patients to give responses like this after visiting our practice?” With negative feedback, ask for suggestions about what could be done better in the future.

  • Should the PFAC have decision-making authority?

    It depends on the structure of the PFAC and the type of project being addressed. Quiz Ref IDTypically, the role of a PFAC is to generate ideas and advise, not decide. However, in collaboration with physician leadership, a PFAC may be given some shared-decision making authority in projects such as informational materials for patients. Whatever you decide should be made clear in the PFAC charter.

  • Should there be term limits for PFAC members?

    Many PFACs find that new and fresh perspectives help sustain the energy and productivity of the group over time. A typical model uses two-year terms that can be renewed twice, for a total of 6 years. Consider staggered terms so that not all members rotate off the council at once. Your charter should include a procedure for filling vacancies when members must leave before their term expires.

Step 6 Track the Results of the PFAC and Celebrate Successes.

As with any project, it's easy to move on before taking a moment to reflect and celebrate our achievements. This honors the work that has been done and shows gratitude to the people who do it.

By celebrating success, we reinforce the motivation that will carry the PFAC through the next achievement. Take the time to step back and recognize the efforts made, and do it authentically. Be specific about what was accomplished, how it made a contribution, and why it's important.

Track Results. Most PFACs find it easier to qualitatively measure impact at the beginning by assessing others' perspectives on the value the PFAC has provided through discussions or focus groups. As the PFAC continues to develop, you may want to consider more quantitative assessments. You can review patient satisfaction surveys to see if changes made with PFAC input has impacted scores or if patients have provided feedback. If your initial self-assessment revealed specific gaps that PFAC work helped to fill, that is a result that should be captured.

Celebrate Success. Be sure to acknowledge your PFAC's contributions by reviewing the results of its work together and then sharing successes with your practice and your community. PFAC members can also help spread the word beyond the practice through their own networking in the community.

Conclusion

Participating in a PFAC can be incredibly rewarding for everyone involved. Acknowledging the unique perspectives of your patients and encouraging them to contribute to improving your practice can enhance the experience for the patient, family, and the entire care team—and result in more efficient, effective, and higher quality care, and ultimately, bring joy back to work.

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Credit Designation Statement: The American Medical Association designates this enduring material activity for a maximum of .50 AMA PRA Category 1 Credit™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Disclaimer: The project described was supported by Funding Opportunity Number CMS-1L1-15-002 from the U.S. Department of Health & Human Services, Centers for Medicare & Medicaid Services. The contents provided are solely the responsibility of the authors and do not necessarily represent the official views of HHS or any of its agencies.

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Renewal Date: August 22, 2019

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