Many of the characteristics of care parents described as receiving and valuing at medical homes correspond with core components of PCMH models. The parents included in this study received care at practices recognized as PCMHs through the 2008 NCQA Standards and Guidelines for Physician Practice Connections-Patient-Centered Medical Home (PPC-PCMH). This recognition process included standards related to access and communication, care management, patient self-management support, referral tracking, and advance electronic communications -- all of which were described by parents as valued elements of the primary care their children received. Given that parents can only realistically comment on those aspects of PCMHs that they directly encounter and interact with, they may be unaware of processes related to additional PPC-PCMH standards operating in the background, such as patient registries and test tracking, even though these functions might indirectly improve their experience of the quality of their child's care. For example, parents attached great value to care coordination, many aspects of which are facilitated by the presence of health information technology (HIT) and patient registries. Although many parents of CSHCN reported challenges in getting needed care coordination in the National Survey of Children with Special Health Care Needs (Strickland et al., 2004), the parents in this study described positive experiences with care coordination in their children's primary care practices, all of which were recognized as NCQA Level 3 PPC-PCMH practices. This suggests that that the NCQA medical home recognition program, as implemented in practices in our study, is satisfying the preferences of parents of CSHCN and that recognition processes may identify practices that are more able to support families in taking care of their children.
Some researchers and policymakers have concerns, however, that recognition processes currently focus too heavily on practice infrastructure and too lightly on patient experience (Bechtel & Ness, 2010; Berenson et al., 2008). The concern is that underemphasis of patient-centered qualities downplays what some perceive as most important in the PCMH movement (Rogers, 2008) and to parents like those in our study. As one parent-leader said, "I am sad that the medical home model has moved down a direction of certifying places instead of really, really drilling down on the patient experience. That's where I think we lost the fidelity to the intent." That is, some recognition programs may "emphasize infrastructure and forget that relationship-centered care is the core of the PCMH and that the purpose of infrastructure is to support patient-centered care, not divert from it" (Roger, 2008). For example, NCQA's 2008 PPC-PCMH tool has nine standards, which some feel overemphasize infrastructure over patient-centered features, such as assigning more weight to HIT-related components than patient-centered components like care continuity and a focus on knowing your patients (Landon et al., 2010). The underemphasis on recognizing many of the characteristics parents value is likely because these characteristics are more difficult to measure. Finding a balance between infrastructure and patient-related characteristics and incorporating feasible measurements of both seem to be worthwhile procedures to address this concern.
To measure and implement the features of care that are most important to parents of CSHCN, practices will need to engage parents in decision-making related to their children's care, as well as in practice-level quality improvement efforts (Han et al., 2013). The call of parent-leaders in this study to incorporate parents in PCMH-recognition processes and use their input to guide quality improvement is aligned with the growing research base on including parents and families in setting priorities for medical home implementation (Han et al., 2013; Zickafoose et al., 2013; Bechtel & Ness, 2010; Berenson et al., 2008). Assessments of patient satisfaction and experiences (in this case, the views of parents of CSHCN) would likely uncover issues for practices to consider when engaging in the PCMH transformation process. Although patient-centeredness is not yet an explicitly scored standard by NCQA, that body's updated PCMH 2011 recognition guidelines include requirements for increasing patient and family engagement in health care and give credit for collecting information on patient experiences using the Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey for primary care. Under the 2011 standards, practices also can apply for an optional and additional distinction for reporting patient experiences collected using the CAHPS survey (NCQA, 2011; Han et al., 2013).
Because implementing surveys such as the CAHPS requires time, money, and expertise, it may not be feasible for many practices interested in becoming a PCMH to do so. Thus, to further the opportunity to include parents in quality improvement activities, policymakers and organizations leading PCMH transformation efforts can consider alternative ways to support practices -- especially small ones -- in doing so. At the systems level, developing approaches to involve parents, gather information on the patient experience, and use that information to guide practice transformation will be challenging. It will also likely require changing the culture of primary care service delivery and financing such that the provision of high-quality patient-centered care becomes an integral aspect of health care. Possible ways of supporting these cultural changes include providing additional financial incentives (e.g., higher capitation and fee-for-service rates for patients served through PCMHs) and incorporating expectations for collecting and reporting patient experiences in health care delivery systems (Han et al., 2013; Landon et al., 2010). Some states, including Colorado, Minnesota, and Massachusetts, are currently experimenting with ways of doing this. For example, Colorado certifies and provides enhanced Medicaid and Children's Health Insurance Program reimbursement to pediatric medical homes that meet standards the state established. As part of the PCMH certification process, the Colorado Department of Health Care Policy and Financing contracted with organizations to send facilitators to visit practices and conduct interviews with parents to get a sense of practices' "medical home-ness" including family centeredness, cultural competency, and care continuity. Parent feedback is used to guide quality improvements (see Colorado Children's Healthcare Access Program at http://www.cchap.org/support-services/). Additionally, managed care organizations contracting with state and local governments are often required to administer patient experience surveys with beneficiaries, and several states (for example, Massachusetts and Minnesota) have public and private sector efforts to field patient experience surveys across broad populations, offering potential models for collecting patient feedback on a wide scale.
Results from our study also highlight a significant misalignment between the PCMH movement in the policy and program arenas and in the knowledge base of parents. Although all consumer parents in this study received services at recognized PCMHs, eight of the nine were unfamiliar with the term and concept of medical home. If this unfamiliarity also exists in the larger population of parents, then parents are unlikely to use recognized PCMH status when making health care choices for their families. If PCMH-recognition indeed signifies high-quality care that embodies many of the characteristics that parents value, it will be important to identify effective programmatic and policy strategies for increasing parents' knowledge and awareness of the concept, as well as their access to listings of recognized PCMHs in local communities. Parent-leaders in this study identified potential strategies for increasing parents' knowledge and awareness, including enhancing pediatric providers' ability to explain the concept; working with other providers such as social service workers, nurses, school districts, and day cares to disseminate information; and encouraging provider collaboration with consumer organizations. Additionally, several states and some regional partnerships have begun to implement efforts to make information on PCMH-recognition easily accessible and publicly available (for example, Massachusetts and Minnesota), and the NCQA makes its list of recognized practices available on its website. Primary care practices could also make this information available to potential patient families. State Medicaid and Title V programs for CSHCN could also play a role in closing this knowledge gap by providing parents with listings of PCMHs in their area during enrollment or re-enrollment.
In conclusion, parents in this study articulated that they valued a variety of characteristics in the primary care they received at PCMHs for their children with special needs. The features of care that mattered most to parents most often related to patient-centered qualities of the care. Although parents were able to describe these characteristics, they were unfamiliar with the medical home concept. Parent-leaders discussed this lack of awareness as a target for future efforts to improve the reach and impact of medical home initiatives meant to improve the care of CSHCN. Leaders also emphasized the importance and potential value of including parent feedback and input during and after the recognition process as a key driver of quality improvement efforts. Organizations involved in recognizing practices as medical homes and policymakers interested in PCMH initiatives may consider investing in educating parents about the features of medical homes, educating practices about the value of including parents as partners, and developing strategies to incentivize practices to gather and use parent feedback as an integral part of continuous quality improvement.