When asked to identify those features of PCMHs they thought were particularly valuable for CSHCN and their families, parent-leaders often identified characteristics that corresponded closely with the provider and practice characteristics that the consumer parents identified as important (see Section III).
Parent-leaders emphasized the value of PCMH models putting patients and their families at the center of care and involving them in shared decision-making.
Within the category of provider characteristics, parent-leaders concur with consumer parents that it is highly valuable to have a primary care provider who makes parents feel known and cared for, listens to them, does not rush, is sensitive to the patient experience, and engages in shared decision-making. Most leaders described providers that acted in these ways as being "patient-centered" and said that these types of behaviors were important components of the medical home concept. One leader said, "Until we understand what's important to the individual family, we may not be providing the optimal [or] most efficient care for them." Parent-leaders emphasized that gaining an understanding of what is important for each child and family requires that providers spend adequate time listening and answering questions during appointments. It also requires that providers reach out to families who do not readily express their opinions.
"Until we understand what's important to the individual family, we may not be providing the optimal [or] most efficient care for them."
More than half of the parent-leaders we talked with discussed the importance of shared decision-making in PCMH models, and one leader said that medical homes were distinguished by the fact that parents know they will "have a voice for [their] child" and be a part of health services planning for them. Parent-leaders described this aspect of PCMHs as parents being "empowered" or being "partners" in determining their children's health care. For parent-leaders, this was a byproduct of putting patients at the center of care. Putting patients at the center required that providers take parents' preferences and opinions into account and that they work collaboratively with parents when deciding on the best course of action for their children.
Parent-leaders highlighted care coordination as a key feature of PCMH models.
All six parent-leaders described care management and coordination as a vital component of medical homes for parents of CSHCN. These leaders valued efforts by provider to share information among each other among and to link families to supportive services. Similar to preferences expressed by consumer parents, some leaders said that because many CSHCN see multiple specialists, having a physician that communicates with specialists and ensures the sharing of information is a critical support. One leader described this quality of PCMHs by saying, "I think [a PCMH] pulls together all the care into one place." Another leader said, "[The] medical home really is the teamwork. It's not a place. When we talk about medical home, we talk about the verb, the action part of what is being done, the integration piece."
"Care coordination doesn't rely on parents or family members to be the carrier of information between specialists and [primary care] providers."
More than half of the parent-leaders mentioned that the care management and coordination services provided in a PCMH lessens the burden on parents, who otherwise must convey information between providers. One parent-leader also noted that parents lack medical expertise needed to determine which pieces of information are important to convey. He said, "Care coordination does a couple of things for [families of CSHCN]. Probably the biggest one for me, and, I think, for the improvement of the quality of care, is that it doesn't rely on parents or family members to be the carrier of information between specialists and [primary care] providers . In our own case as parents, there've been times where we've heard news from a provider that we thought sounded really important and really big, and that wasn't important to the other provider, just because we don't know as much about neuroscience and those kinds of things. We don't know what we're looking for. So that's huge. And the other thing that makes the coordinating piece so big for us is that it cuts down on the number of people or number of phone calls that we have to make at any given time . The to-do list for most of our families is already longer than we can complete." Another leader commented that she thinks collaboration and coordination between providers is important because "a lot of concepts or knowledge [get] lost in translation" when parents serve as the go-between.