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


Step Two: Recruit Diverse Patient and Family Representatives as Council Members

In This Section:

Overview
Recruitment Fundamentals
Clarifying PFAC Membership Expectations
Recruitment Planning
PFAC Member Selection and Orientation

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Overview


Now that your practice has spent time laying the groundwork for a PFAC, your PFAC launch team is ready to reach out to patients and families. Your next steps depend on what PFAC model your practice has decided is right for you:

  • If your practice has decided on a less formal, focus group-style PFAC as a way to get started, you can focus your efforts recruiting patients and families for your first meeting.
  • If your practice has decided on a formally structured PFAC, you will want to set aside time to recruit, interview, select and prepare PFAC members before convening your first meeting.

Representatives from Holyoke Pediatric Associates and South County Pediatrics, two practices participating in NICHQ's CHIPRA Massachusetts Medical Home Initiative, share some tips and suggestions for creating a Patient and Family Advisory Council (PFAC). Source: https://vimeo.com/62279415

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Recruitment Fundamentals: Creating a PFAC that Represents the Voices of Your Entire Practice


Regardless of your PFAC structure, several fundamental principles apply when it comes to recruitment of PFAC members. 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.

Fundamental 1: Eligibility

Who can be a member of your PFAC? It sounds like a simple question, but it’s more complicated than it seems.

Parents are likely to join. But what about guardians, like grandparents and foster parents? How about caregivers who may not be legal guardians but who are allies of your patients? They might have insights to share, too. Letting families define themselves ensures that all perspectives are included. Former patients and families who have aged out of your practice can also provide valuable feedback.

What about your young adult and youth patients? Will you engage them? 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. MultiCare Health System’s Mary Bridge Teen Partnership Council and Boston Children’s Hospital’sTeen Advisory Committee are two examples. Giving younger patients opportunities to give feedback through youth-friendly feedback surveys, like a simple postcard, is a wonderful way to encourage engagement from a young age and raise your future PFAC members!

Staff who are also patients/families have a unique vantage point and can be invited to join PFACs. However, it can be difficult for them to share negative feedback about the practice in front of patients and families. Special consideration should be given to their participation.

Too many staff members present in general can also affect the dynamic of the PFAC. Try to maintain a ratio of no more than one staff person to every two to three patients/family members. If staff people want to attend the meetings and there is a risk that staff will outnumber patients/family members, it may make sense to limit staff attendance to the portions of the meeting most relevant to their role. Many PFACs require that more than 50 percent of the membership be held by non-staff patients and families.

Fundamental 2: Ensuring Diversity

Recruiting a PFAC membership that reflects the diversity of your entire practices takes effort. 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 and sexual orientation.

Here are some ideas for encouraging diversity as you recruit PFAC members:

  • Ask staff for ideas on recruiting for diversity.
  • Remove as many barriers to participating as possible. Offer childcare, food, parking vouchers and even stipends in the form of cash or a gift certificate to a local grocery store as recognition of members’ contribution of time.
  • Ask patients and families what accommodations would allow them to attend.
  • Have the invitation and recruiting materials translated and make arrangements for interpreters at your meeting.
  • Use simple and welcoming language and make sure it is easy to read.
  • In recruiting materials, using the term “family” instead of “parents” and allowing families to define themselves helps to include a wide range of voices.
  • Make a special effort to reach out to both parents. Providing child care, for example, makes it easier for both parents to attend. For some families, both parents may not think to attend — so ask!
  • Seek help from others in your organization who have expertise in multi-cultural affairs or who have close community connections.
  • If possible, connect with community organizations that may have recommendations or referrals for your patients.
  • Create a recruitment plan so that you have enough time to publicize.

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Clarifying PFAC Membership Expectations


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

Membership Expectations Overview

Use this list to clarify what you’re asking of members. The document outlining membership expectations should contain the following:

  • General Summary: A few sentences about your practice and the PFAC purpose.
  • Duties and Responsibilities: Describe what PFAC members will do, how often they will meet, term appointment, etc. If a minimum number of meetings are mandatory, be upfront about that.
  • Skills and Abilities: List the useful or preferred qualities. See below for more information.
  • Application Process: Explain how to apply.
  • Special Requirements: Describe any special requirements that PFAC members will be required to complete, such as completing a CORI check or drug screen, or providing a social security number.

Qualities and Skills of Patient and Family Advisors

There are a number of leadership and collaboration skills that have been identified as crucial to success on advisory councils. Here are a few qualities and skills of patient and family advisors identified by the Institute for Patient and Family-Centered Care [source]:

Seek individuals and families who are able to ...

  • Share insights and information about their experiences in ways that others can learn from them
  • See beyond their personal experiences
  • Show concern for more than one issue or agenda
  • Listen well
  • Respect the perspectives of others
  • Speak comfortably in a group with candor
  • Interact well with many different kinds of people
  • Work in partnership with others

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Recruitment Planning


Whether you’re trying to recruit patients and families to apply for formal PFAC membership or to simply attend an open 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 in on PFAC activities. Using multiple outreach techniques will ensure that your message reaches a wider audience.

Recruitment Materials, Samples and Templates

Here are some recruitment materials, samples and templates that your practice may want to use.


Conducting Informational Meetings with Interested PFAC Members

In-person meetings are an effective way to get to know the patients and families interested in joining your PFAC. It’s a chance to explore the values, needs and skills of both you and the interested patients and families. Every meeting is a chance to build relationships with patients and to have a conversation about what matters to them and how you can partner to make a difference. Use these meetings to confirm that patient/family members are a good match for your PFAC, to learn more about what might prevent them from engaging, and to identify what kind of training and support you will need to provide.

Organizing for Health’s Recruitment Guide offers a rich framework for engaging in an exploratory dialogue with patient/family leaders around partnering in healthcare transformation. They recommend in-person meetings as the most effective way of getting to know your potential partners. They advise opening the meeting by sharing something meaningful about yourself, like what brings you to this work, as a way to invite an open conversation. Consider holding the meeting at a location like a coffee shop that is convenient to the patient/family member. Here are some adapted questions that can guide your meeting:

  • Story: What’s your family story? What in your life brought you here today? (Discover ability to connect personal story to larger context.)
  • Challenges: What keeps you from action? What do you fear? What would you want to learn? What might prevent you from fully engaging? (Discover barriers to participation.)
  • Hope: What motivates you to act to improve our practice? What’s your vision of how things could be different if we worked together? (Discover shared values.)
  • Leadership Resources: What skills do you have? How do you lead others already in your life? What would you be willing to bring to this work? (Discover leadership and collaborative skills.)

If your practice has decided on a formally structured PFAC, you will want to set aside time to recruit, interview, select and bring on board PFAC members before convening your first meeting.

For practices launching a more informal PFAC, you’ll need to finalize certain details regarding your first meeting so that you can include the information on your invitation. The invitation checklist below is a list of things to consider when planning your first meeting.

  • What? Describe the meeting and the focus of the meeting. If you’re only going to be asking questions about a specific aspect of your practice, it’s important to let people know ahead of time. See Step 3 of the PFAC Toolkit for more details on how to create a framing question.
  • When? Pick a date and time that is convenient for the greatest number of families. Weeknights are usually best.
  • Where? Let people know where you’ll be meeting. If the practice has different security/parking procedures during the time you’re meeting, let everyone know.
  • How? Include details on what you’ll be offering, such as child care, interpreter services, food, parking vouchers, stipends for time and transportation.
  • Why? Explain what your practice will do with the feedback.
  • Other Information: Include contact details if people have questions or to RSVP. Encourage them to bring a friend who is also a patient or family member of the practice if that is appropriate. Invite people to be in touch if they’re interested in participating in the future but can’t make this meeting.

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PFAC Member Selection and Orientation


Some PFACs will benefit from formal and specific membership, and others may wish to be less formal and more open. There are advantages and disadvantages to each style.

Limited vs. Open Membership

Having a set team can foster relationship and commitment, but interviewing and selecting patients can feel uncomfortable if you’re worried that turning people away will jeopardize the relationship between the patient/family and the care team. If your PFAC will only contain a limited number of members, let applicants know you will be choosing a cross section of families (age, disability, care team) at this time and that future opportunities will also be available.

You may realize through the informational meeting process that a particular person isn’t the right person for the role. If candidates are not selected to serve on your PFAC, take the time to tell them and think about ways to engage them now or in the future. If the interview process helped you learn enough about the patients so that you can identify other ways that they can participate and contribute, share that with them. For example, you could put them in touch with a hospital or community committee or council or ask them to give feedback on a specific issue that they seem knowledgeable about. There may be a smaller project that they could work on that you would both feel good about, like Discovery Shopping or shadowing other patients during their visits to discover more about patients’ experiences. (See this Walking in the Patient’s Footsteps video for more information.)

"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

If you’re not choosing PFAC members through a selection process, encourage interested family leaders to assess their own readiness using the self assessment questions in the article Who You Gonna Call?.

Confirming Membership

Regardless of how members are selected, confirming membership in writing is an opportunity to ensure the PFAC member’s understanding of what he or she will be doing. Be sure to use simple, straightforward language. It can include:

  • Details about membership
  • Instructions on next steps, like paperwork procedures or orientation dates
  • The name of a person to contact with any questions

Here is a sample membership agreement letter.

Orientation for New PFAC Members

Your organization may have paperwork requirements for new volunteers and staff. Check with your human resources department, volunteer department or hospital PFAC liaison (if you have one) regarding these requirements. Those departments may also be able to help you in creating an orientation for new board members.

If you need to design an orientation yourself, consider including the following orientation components from the Institute for Patient and Family-Centered Care [source]:

  • Introductions and the sharing of personal and family stories
  • The vision and goals of the organization
  • The purpose statement of the PFAC
  • The role of the council, how it fits within the organization’s structure, and
  • how it can assist the organization in achieving its vision and goals
  • The roles and responsibilities of members
  • The roles and responsibilities of officers
  • HIPAA and expectations for honoring privacy and confidentiality
  • Meeting attendance expectations of members
  • The roles and responsibilities of staff on the council
  • How to be an effective council member
  • How to present issues effectively
  • How to be most effective in collaborating with hospital/clinic staff and faculty

In addition, you could also give new members a tour of the practice and introduce key staff. Most importantly, use orientation as an opportunity to show your gratitude for new member participation by creating a welcoming experience and creating a warm, hospitable environment.

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