Insights

4 Tips for Including & Engaging Family Partners in Your Work

July 27, 2023

Building thoughtful patient and family partnerships into QI initiatives and other projects is essential to establishing increased quality and safety in health care.  

By supporting patient and family voices and encouraging space for collaboration, health care professionals can help ensure shared vision and values are at the forefront of determining solutions to improve a community’s health outcomes. 

When working to increase family engagement, there are a variety of considerations to make, and institutions may be unsure how to start. The National Institute for Children’s Health Quality (NICHQ) and the Florida Department of Health Office of Children’s Medical Services Managed Care Plan and Specialty Programs developed a Roadmap to Inviting, Engaging, and Including Patient/Family Partners in Quality Improvement and Other Related Initiatives. The roadmap provides a framework for effective engagement and inclusion of a Patient/Family Partner (PFP) onto a work group, advisory council, Quality Improvement (QI) team, or other clinical or health systems initiatives.    

Kelly Edwards, Senior Project Manager for NICHQ’s Florida Children’s Medical Services Learning and Action Network project, said NICHQ’s team and the Florida Department of Health, believe that family partners are the heart of the initiative, and they should be involved at all levels of the program – especially quality improvement projects. 

“What we did, in the beginning, was focus on gathering information. We really wanted to understand who was in the network, what barriers teams were experiencing bringing in a family partner, what successes teams were having, and what resources teams were aware of to help engage family partners. That learning has led us down a path of creating a handful of resources for our learning and action network, specifically around family partnership and quality improvement projects,” Edwards said. 

Read more for four helpful tips to remember when including family partners in your work.

1. Include family partners from the beginning 

Involving family partners as foundational members of your project team allows for increased collaboration when determining the overall direction of the project and setting goals. When engaged from the beginning, family partners are likely to enthusiastically participate in your initiatives and are more encouraged to contribute thoughtful input. Think about areas where your organization already collaborates with patient/family partners, even on a small scale. Identify onboarding and other processes and materials that can be utilized from those successful partnerships and apply them to your current project or QI initiative.  

If your organization has not historically worked closely with family partners, getting started may include designating a specific hospital team member or staff liaison to lead patient/family engagement, including recruitment, orientation, and continued support of family partners.  

2. Clearly outline how family partners can help 

When inviting a family partner to participate in your initiative, create a job description that clearly identifies their role, includes their direct responsibilities, and outlines their compensation plan. (NOTE: a sample job description can be found in the Roadmap to Inviting, Engaging, and Including Patient/Family Partners in Quality Improvement and Other Related Initiatives.)  

Determine how you want to work with a family partner before your outreach. Do you need support in an advisory role, or will your family partner be an active team member? Will they sit on focus groups, or work on project co-design and development? Defining a family partner’s role on your team will help you determine the necessary skills and qualifications you’re seeking to fill the position. 

Although they offer an array of useful knowledge and experience navigating the health care system, working alongside hospital teams and health professionals may be intimidating. Ensure your family partners are prepared to support your team with necessary training materials with information pertinent to the team initiatives, like a glossary of terms and acronyms consistently used by the team, clinic, and health system, and those specifically related to the project. 

3. Ensure there are a variety of voices at the table 

It’s important to ensure a variety of perspectives are reflected in your project. When recruiting and engaging family partners, maintain considerations of diverse, historically marginalized partners, and use a culturally sensitive approach throughout the planning, development, and inclusion of patient/family partners.  

Try to eliminate barriers to participation for these partners. Work with them continuously throughout the initiative by providing necessary guidance and support such as training, meeting accommodations, technology assistance, and one-on-one check-ins. 

4. Listen to family partners and implement their feedback  

Family partners can provide valuable feedback at every stage of a QI project or initiative. Listen to their insight and implement feedback received to not only shape the direction of the project but also modify it if needed. Create comfortable opportunities throughout meetings for family partners to share perspectives and ask questions. When patient/family partners feel that their insight is useful and their feedback is reflected throughout the course of a project, they’re likely to remain engaged and turnover is reduced.  

To learn more about the importance of involving and engaging family partners in your work, listen to EPISODE 4 of Before Birth & Beyond, featuring Linda Starnes, Statewide Family Leader with the FL Title V Children and Youth with Special Healthcare Needs Program, and Antoshia Reed, FL CMS LAN Family Partner, who share their experiences navigating the health care system as caregivers of children with special health needs.  

The roadmap guide was developed by Linda Hampton Starnes, Statewide Family Leader, Title V Children and Youth with Special Health Care Needs Program, Office of Children’s Medical Services (CMS), Florida Department of Health, in collaboration with CMS’s Learning and Action Network (LAN) partner, the National Institute for Children’s Health Quality (NICHQ). Lead Editor was Eliza Williamson, Senior Project Manager, NICHQ, with supplemental editing by: Sandra Widland, NICHQ and CMS LAN Project Director; Joni Hollis, Bureau Chief, Office of CMS; Kelli Stannard, Nursing Consultant, Office of CMS; and Angela Miney, Family Partner, University of Florida Health Pediatric Pulmonology Center. 

Special thanks to the Florida Department of Health, which funded the CMS LAN (contract number CMCAA).