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

Step Four: Sustain and Evaluate Your PFAC

In This Section:

Sustaining Your PFAC
Evaluating Your PFAC
Improving Your PFAC

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Creating a vibrant, active PFAC takes more than simply bringing people together. Financial and adminstrative resources as well as a practice’s willingness to engage in the partnership process are required to engage patients and families so that they don’t just come once, but keep coming back to contribute their ideas and opinions.

Like all teams and organizations, PFACs need continuous evaluation to identify ways to improve and to identify the ways in which your PFAC has been successful. If they are to be sustainable, they also need an ongoing commitment from the entire practice.

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Sustaining Your PFAC

One effective method of sustaining commitment to your PFAC is to continuously share their accomplishments with your practice. The PFAC champion and PFAC liaison can act as promoters for the PFAC, seeking out as many ways as possible to spread the word about how the PFAC has changed your practice.

You can use this PFAC Sustainability Worksheet to help you think of ways to promote the work of your PFAC. If your organization has a marketing and communication team, they may be able to help you with this step.

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Evaluating Your PFAC

PFAC members will keep coming back if they feel that they are valued and that they are making a difference — in essence, if they feel there is an authentic family-professional partnership. By involving PFAC members in your evaluation activities, you can incorporate their feedback into the work that you do, which can in turn foster engaging and rewarding partnerships. Evaluation allows you to judge the success of activities that you undertake to develop your PFAC, thus acknowledging what is working well, and also what needs to be improved.

With time and attention, even the most informal feedback interactions between patients and families and practices can evolve into an authentic partnership. Evaluating this partnership using the same measures over time can help to identify areas for improvement in addition to identifying areas that are going well, and track overall progress towards the aim of your PFAC. Such evaluation can then inform the strategies that you utilize for strengthening the partnership. Evaluation can demonstrate areas of success as well as areas that are not working well, which can provide valuable information on how to continually improve your PFAC. There are a number of measures that evaluate this partnership from a practice’s and patient and family member’s perspective.

Below are excerpts or adaptations from a number of different assessment tools that measure patient-professional partnerships broadly and PFACs specifically. Select one tool that most closely measures what is important to your practice and commit to using it on a regular basis, such as every six months. Keep track of your data in a simple spreadsheet, such an excel spreadsheet, to monitor changes in your data over time.

We suggest that your review the data collected from your selected tool and identify action steps to address and improve upon areas that were rated poorly. By tracking this measure over time, you can assess whether the actions you took resulted in improvements the next time you collect data.

Consumer Involvement Scale

As part of their Consumer Involvement Toolkit, Consumer Quality Initiatives, Inc. developed the following scale to describe a progression of consumer involvement. Applying this scale to both PFAC governance and the influence of PFAC activities on practice policy can be a helpful measure in assessing authentic partnership.

Let’s start by using the scale to determine the level of patient/family involvement in PFAC governance (i.e. who creates and runs it). Starting at the lowest level, patients receive and contribute no information about the possible creation of the PFAC.

Using the scale to assess the impact that patients and families have on practice procedures and policies can also be useful. At the lowest levels, patients and families feedback is not sought. Patients and families might be informed of practice policies but not asked for feedback. Levels 2 and 3 might best represent the involvement level resulting from focus groups and surveys, or PFACs that are asked to give feedback on practice-generated questions. Levels 4, 5 and 6 represent escalating levels of authenticity in the partnership. It may not seem appropriate that patients and families would ever reach level 6, with control of your practice, but challenge yourself to look for opportunities to include their perspective and experience in as many decisions as possible. Implementing the recommendations and feedback of the PFAC is one method of joint decision making.

If you chose to use this scale, you can use it as a self-assessment and you can also ask your PFAC members or member leaders to complete it. Your answers may differ and can provide the basis for a conversation which generates ideas for next steps regarding improving partnerships in your practice.

For more information on the Working Scale for Consumer Involvement, see Jonathan Delman’s article, “The Working Scale for Consumer Involvement (WSCI): Developing and Monitoring Health Care Systems and Programs”.

Medical Home Index

The Center for Medical Home Improvement’s Medical Home Index is a self-assessment tool for practices to measure their progress toward medical home transformation. One section of the index specifically rates family feedback (Domain 1, Theme #1.5) according to a progressive scale of increasing engagement. You may want to consider adding target/goal values for each of the scales (e.g. by X months, goal is to improve by 1 level/or - by x date, goal is to achieve level 3)

The optimal level is level 4. You can use the text description in each of these levels to inform the next steps that you can work towards. For example, if you are currently at level 2, you know that you should be working towards what is described in level 3 (i.e. gathering feedback from families through systematic methods).

Family-Centered Care Self-Assessment Tool

If your practice is using the Family-Centered Care Self-Assessment Tool from Family Voices to measure all aspects of family-centered care delivery, there are a few questions you can ask yourself which address family-professional feedback and partnership:

  1. Are there opportunities for families/youth to provide feedback about care? (e.g., surveys, focus groups, or suggestion boxes.)
  2. Does your practice have a formal advisory committee for families and youth to provide input on policies and practices?
  3. Are families/youth offered mentoring, or other supports and training to effectively participate on the advisory committee?
  4. Do you and your staff make accommodations for families and youth who need support to participate in advisory activities? (e.g., English or sign language translation, alternate ways to participate, like via conference call or surveys.)

Medical Home Family Index and Survey

Patients and families can also be asked about their perception of whether the practice is seeking feedback from consumers. The Center for Medical Home Improvement’s Medical Home Family Index and Survey includes two indices.

You may also consider adding an opportunity for open text comments following these two questions to collect more information from respondents on ways in which feedback opportunities could be improved.

Checklist for Involving Families as Advisors and Consultants [Adapted]

This assessment is a tool to help think about ways that families are participating as advisors and consultants at the policy and program level; it was adapted from the Institute for Patient and Family-Centered Care's Essential Allies Checklist for Involving Families as Advisors and Consultants. [source]

Rate each item and then cite specific examples that illustrate how the program is involving families. Use this tool to initiate new opportunities to work in partnership with families or to expand on current activities. For example, you could identify all items that were indicated as not being done well, and develop an action plan to improve on one or two of them by the next time you collect data on this measure.

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Using Quality Improvement Techniques to Improve Your PFAC

The Model for Improvement, developed by Associates in Process Improvement, is a robust and powerful approach for accelerating improvement. Its philosophy of setting an aim, thinking about how to measure progress toward the aim and small tests of change underlie all of NICHQ's improvement work. Around the world, hundreds of health care organizations use The Model for Improvement to improve many different health care processes and outcomes. The Model can be useful in helping you improve your PFAC.

Overview of the Model for Improvement

The Model for Improvement has two parts:

1) Three fundamental questions, which can be addressed in any order:

2) W. Edwards Deming's Plan-Do-Study-Act (PDSA) cycle to test and implement changes in real work settings. The PDSA cycle guides the test of a change to determine if the change is an improvement.

The Plan-Do-Study-Act (PDSA) learning and improvement cycle allows you to test a change in the real work setting — by planning it, trying it, observing the results, and acting on what is learned. This is the scientific method used for action-oriented learning and may be a method that you will find useful in thinking about how to improve your PFAC.

See below for an example of how you could use The Model for Improvement to improve your Patient and Family Advisory Council.

Example: Quality Improvement in Action

Your clinic or organization has formed its patient and advisory council and just noticed that you lack youth membership as well as representatives from the largest cultural community groups you serve. You could apply the Model for Improvement in the following way:

Set Aims: What are we trying to accomplish?
We aim to have a Patient and Family Advisory Council that represents our patient and family constituents. In the next 6 months, we will recruit and orient 2 youth members, and 2 members for the two largest cultural groups in our practice – Hispanic people and new immigrants from Somalia. We want to engage the council in shaping our medical home and seek their advice to improve family and patient partnership.

Establish Measures: How will we know a change is an improvement?
We will track attendance at our monthly meetings as a surrogate measure of PFAC engagement. In addition, we will survey our members quarterly to learn whether and how they rate their contribution to the clinic and how easy it is for them to make suggestions that get acted upon. This data will be displayed on run charts and we will supplement the quantitative with illustrative quotes from our PFAC members.

Select Changes to Test: What changes can we make to bring about improvement?
We will test different recruitment strategies to see what works.

PDSA Cycle

If we ask providers, PFAC members and other care team members to nominate people they know who attend our clinic, will we get enough names to get started with invitations? Will we find a time when we can meet if we include youth and representatives from different cultural groups?

At the next meeting we will ask PFAC members to make a list of potential PFAC members; between now and then we will ask our care team members to do the same. Dr. Hilda will ask the care team members and Camilla will ask the PFAC members. The list will be reviewed the day after the PFAC meeting.

Next, Dr. Walter will send a letter inviting the potential members to come to the clinic for a supper and feedback session on what would make a better clinic visit. This will enable us to see how the candidates interact in a group session (a try-out, so to speak). In addition, Maria will do a phone follow up 3 days before the meeting to make a personal connection and confirm. Rita will order the food.

We predict we will have 7 people who come to the meeting and from those there will be 5 we can invite to participate on the council.

We got a list of 4 people from the PFAC and 12 from our staff. We invited them to a supper meeting and 8 came. We got some great suggestions from them on what we could do to improve things around here.

We realize that we will need at least one translator for the youth and patient representing the Somali community and that we will need a time to meet that is not during school hours if we want the youth to attend.

Our next step is to formally extend invitations and plan for an orientation for 6 of those who attended the session. We imagine not all will be able to participate. If this is successful then we will begin to track attendance and prepare a survey to learn more about the members experience with the PFAC.

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