CF is a complex disease. Providing care requires the coordinated effort of a multidisciplinary team that includes a host of medical professionals and people with CF and their family caregivers. To provide the best care and produce the best health outcomes, people need to communicate best practices, both within teams and between teams. For more than 10 years, the Cystic Fibrosis Foundation has encouraged and financially supported the improvement work of care teams throughout the care center network. The Foundation has partnered with the Dartmouth Microsystem Improvement Academy on its curriculum, to help guide this process. Teams apply to join funded Learning and Leadership Collaboratives (LLCs) to become proficient in the quality improvement (QI) process.
Teams work independently with a coach and also meet virtually and face to face to share ideas and quality improvement tools. During each LLC, teams benchmark practices, meaning they visit a high-performing care center to observe its clinic flow and processes and identify best practices. This week, I attended the face-to-face meeting in Boston with the team I am fortunate to coach. We were excited to learn from the pediatric and adult teams at Boston Children's and Brigham & Women's Hospitals.
That's only half the story though. A disease as complex as CF requires that people with CF and their family caregivers become experts on their own bodies and their own care. Providing high-quality care to people with CF is only possible when we make people with CF and their families full partners in their care. That's why care teams have always incorporated the voices of individuals with CF and their families as part of the improvement work.
Each care team has at least one person with CF or a family representative on their team. This strong partnership between care providers and those they care for facilitates the improvement of care delivery and ultimately, care outcomes.
I was most excited about the session for individuals with CF and family members, which another QI coach and I facilitated. We met with this group at our last face-to-face meeting, and they enjoyed networking with one another so much they asked to meet again at this meeting. We met virtually for pre-planning, and they decided that for family members, it would be a good idea if they brought two items with them for the two-hour meeting:
- a picture of their loved one, so that this individual could be “included” in the session
- a pressing question that they could ask the group for help to answer
The family members enjoyed helping and encouraging each other along this journey. It is a way that they can improve the quality of care they deliver at home!
There also was a session in which the voice of this group could be shared with care team members. It helps care teams to hear from individuals with CF and their families about their lives, struggles and perceptions. This year, the group provided a range of experiences reflecting multiple aspects of life with CF.
One mother discussed daily life in her home. A grandfather shared his experience with a pediatrician who did not understand CF. One of the mothers in attendance, who also had two siblings with CF, shared that experience and perspective. And another mother related an emotional experience of how she is working through the transition of care with her pre-teenage daughter. Care teams were engaged and impressed by this family participation and transparency. The session proved to be very powerful and moving.
It is always encouraging to see all the improvement work that we accomplish over the two-day period and to see the teams share graciously -- and steal shamelessly from one another! The patient and family participation in this process, though, is the key to improving the quality of care delivered and received at care centers.
