The National Institute for Children’s Health Quality (NICHQ) has been a pioneer of the active participation of family partners on improvement teams alongside providers and professionals to effectively advance children’s health. The reason is simple: system improvement should be driven by the perspectives of the people who are most closely affected by the system’s performance. We have heard time and time again from providers and family partners that the experience of working together has been invaluable. This was a foundational principle for the CHIPRA Massachusetts Medical Home Initiative, in which the active engagement of family partners on all improvement teams has helped transform 13 pediatric practices.
Patient engagement was a critical component of transformation for the 13 practices that participated in the CHIPRA Massachusetts Medical Home Initiative from August 2011 to December 2013. While it was challenging, participating practices were able to authentically and effectively integrate the patient perspective and family partners into their quality improvement teams in a thoughtful and successful way.
Key highlights include:
Collaboration: Family Partners on Improvement Teams. As part of the requirements for applying to participate in this initiative, each practice was required to identify two family partners to serve on their improvement team. This allowed family partners to be engaged in the work of the learning collaborative from the beginning.
Innovation: “Discovery Shopping” Exercise. Each practice teams conducted a “discovery shopping” exercise in which they simulated an office visit within their practice. The exercise was conducted by a practice team member (acting as the family member), a family partner (acting as the parent or themselves), and the child or adolescent of the family partner (acting as the patient or themselves). The goal of the exercise was to deeply understand the patient experience and identify areas for improvement.
Communication: “Community of Practice” Breakout Sessions and Storytelling. The most successful approach for fully engaging family partners in the improvement work was to hold “community of practice” breakout sessions where family partners met to tell their stories of what brought them to the work and how they were using their personal experiences to help transform their practices into pediatric medical homes.
Transformation: Fully Integrating Family Partners. All learning sessions and activities were conducted in a manner that ensured relevance for participating family partners. For example, presenters were careful not to use medical jargon and interpreters were often used to ensure family partners understood the content.
Systems Change: Resources for Spreading Best Practices. In collaboration with the Federation for Children with Special Needs and Mass Family Voices, NICHQ created two important resources to support ongoing systems change. The first is a toolkit designed to help pediatric practices establish and maintain Patient and Family Advisory Councils (PFACs). The second is a Family Engagement Guide, which helps practices effectively implement and sustain family health partnerships.
Key lessons include:
Engage Family Partners as Collaborators, not Advisors. The most successful teams engaged their family partners as true collaborators in the work and included them in regular team meetings, often moving meetings to fit their schedules.
Include at Least Two Family Partners per Team from the Beginning. Having two family partners on each improvement team allowed practices to obtain multiple perspectives from the onset of the project. It also enabled the family partners to support each other in the work and cover for each other when needed.
Storytelling Is Critical. Giving family partners the opportunity and space to talk about what brought them to the medical home transformation work and what expertise they brought to the practices was a powerful way to help family partners become true collaborators on their practice transformation teams.
Involve Multiple Stakeholders and Thought Partners. By working with many stakeholders, including quality improvement experts, family leaders, providers and practice administrators, NICHQ and its partners were able to understand many perspectives. The work products were more relevant and valuable as a result.
Practices Need Help Effectively Implementing Patient Engagement Concepts. Family engagement is key to medical home transformation efforts, yet it is very difficult for practices to implement. We hope the resources we created will support pediatric practices in making these important changes.
This initiative helped 13 primary care sites across the state of Massachusetts make measurable improvements in comprehensive well care, developmental health, mental and oral health, clinical outcomes, patient safety, care planning, transition to adulthood, efficiency, and medical home transformation.
As one example, aggregate results for the practices showed an increased implementation of wellness assessments from 62 percent to 80 percent for ages 2-4; 63 percent to 94 percent for ages 5-12; and 80 percent to 94 percent for ages 13-18. That means approximately 20,000 more children are receiving comprehensive wellness assessments and appropriate immunizations each year in these practices as a result of their transformation into a medical home.
Universally, the practices reported that the involvement of parent partners on the improvement team was a major reason for these successes. Maria Mignone, RN, a team leader from Pediatric Associates of Greater Salem, captures the overwhelming support for the patient engagement efforts in this testimonial: “Having patients there while we were brainstorming, they’ll bring up different scenarios they’ve encountered, and that certainly helps our clinical team change the way we think about something. It’s a benefit to have a parent in the room while we’re in a meeting, speaking with us directly about what we’re focused on.”
In addition, the effort passes on a lasting legacy in the form of valuable resources to help other practices around the country effectively implement patient engagement innovations. The PFAC Toolkit, which was completed in March 2013, has had nearly 10,000 page views on NICHQ’s website. The Family Engagement Guide has had more than 500 page views since it was posted in January 2015. These and other NICHQ resources about patient engagement can be found at: www.nichq.org/about/expertise/patient-and-family-engagement.