Because of their familiarity with the medical home concept both from first-hand experience as the parents of CSHCN and also as involved leaders at advocacy and governmental organizations supporting this population, the parent-leaders were able to offer a variety of suggestions for expanding PCMH initiatives and models so that they further benefit CSHCN and their families. Suggested expansions related to four areas: (1) extending the reach of PCMH models beyond medical care; (2) considering a role for specialists; (3) increasing parent awareness of PCMHs; and (4) increasing parent involvement.
Parent-leaders suggest expanding the reach of PCMHs into mental and behavioral health, social services, and education.
Parent-leaders want medical homes to offer support in a broader range of arenas than traditional physical medical care, including mental and behavioral health services and other social services. At least two leaders discussed the ongoing challenge of what they described as an inadequate integration of behavioral and mental health services in primary health care. This is of particular concern for CSHCN, as many in this population have both physical and behavioral health needs. As one leader said, "Mental health and physical health are going to have to collaborate
. We don't separate our kids' heads from their bodies."
Several parent-leaders also discussed a desire to expand the PCMH model to include coordination and linkages with additional systems outside of health care, including education, social services, and vocational supports for older CSHCN. One leader said, "I think the medical home allows for an environment that is truly comprehensive. My concern is that in many practices
that comprehensive nature can tend to be limited to the medical world. When you have kids like ours, the social arena and the educational arena can be equally as big and convoluted as the medical arena."
Parent-leaders recommend a larger role for specialists in PCMH models.
A few parent-leaders pointed out that for many CSHCN, visits to a specialist provider may be more frequent than those to the primary care provider, and questioned whether specialists would be better suited to leading care teams than primary care providers as a result. "[For] a lot of the families I know, their primary care provider is not their consistent source of care -- it's the specialist that's most closely related to the child's biggest need [and who is seen most frequently]." The primary care provider is "part of the team, but is not the critical player," she explained. One parent-leader wondered if the PCMH model, which is currently positioned as a primary care model with a primary care provider as the lead, could be transferred and implemented in specialty settings.
Parent-leaders believe it is important to increase parents' awareness of the PCMH concept.
All but one parent-leader we talked with thought that awareness of the PCMH concept was unacceptably low among parents of CSHCN. Parent-leaders cited a few possible reasons for this low level of awareness, including parents often being overwhelmed by the day-to-day activities of managing their children's health and therefore not having time to read information that comes their way and ineffective messaging from medical homes and organizations promoting the concept.
Nearly all of the parent-leaders stressed the importance of raising parental awareness of the PCMH concept so that parents can make educated choices when selecting a primary care provider and feel comfortable when asserting their preferences to providers. One leader said, "If anything, that's the part that I would want to have developed more [in the medical home concept]
for families to know what [a medical home] is, and that they can have one, and that they should be at the center [of their child's health care.]" Nearly all of the leaders provided suggestions for strategies to increase parental awareness of the PCMH concept. Suggestions included enhancing pediatricians' ability to explain the concept to their patients' families; working with other providers such as social workers, nurses, school districts, and day care providers to encourage them to either disseminate written materials or explain the concept verbally to parents; and encouraging collaboration with parent advocacy groups. One parent-leader suggested working with hospitals to educate parents about medical home models "when their children are born."
Parent-leaders strongly recommend including parents in the PCMH-recognition process and using their input to guide quality improvement.
All but one of the parent-leaders explicitly called for an increased emphasis on parent involvement and input as part of the routine functioning of medical homes. Leaders agreed that patient experience should be included in the recognition process and that parents, based on their personal experiences of receiving care, could offer unique insights of which providers and practice management might not otherwise be aware. One parent-leader said "[Practices] should definitely ask the parents what's working and what's not to see what changes need to be made or [what] improvements [they could make], or if everything is just fine." As an example, one parent-leader discussed working with a practice that implemented a feedback mechanism. Through this feedback, the practice learned that its "phone call answering wasn't up to par and the waiting time was too long." Parent-leaders also suggested several methods of incorporating parent input into the processes of recognizing and transforming practices into PCMHs. The most frequently mentioned methods included explicitly asking for feedback from parents while they sit in the waiting room, doing questionnaires or surveys, running focus groups, or informally asking parents about the services they received at the end of office each visit. Other ideas included developing standing parent advisory panels or holding parent forums. One parent-leader said, "It's absolutely key for parents to be able to be on a panel or have a forum where they can provide feedback," so that practices can hear parents' perspectives on the care they provide. Parent-leaders also suggested that organizations recognizing practices as PCMHs include comparative survey tools like the Medical Home Index in their processes. This index can be used to gather and compare provider and parent perspectives on the care experience.
"[Practices] should definitely ask the parents what's working and what's not working to see what changes need to be made or [what] improvements [they could make], or if everything is just fine."
Two parent-leaders suggested that practices use parents as peer resources for other parents. These parent liaisons could share information based on their knowledge and experiences with other families and could aid other families in addressing issues with insurance companies, school districts, and other systems. As one leader said, "[Parents are] an incredibly valuable resource that I believe every practice in the country has available to them, but because they haven't seen that being modeled
they don't know how to access it so all of their families get the benefit of it
. [Peer parent resources] can fill the non-medical pieces of the medical home."