Dual Eligibles' Experience of Care with North Carolina's Patient-Centered Medical Home

Abstract

Although individuals enrolled in both Medicare and Medicaid (dual eligibles) are among those with the nation's greatest need, at $300 billion per year, their care is also expensive and beset by quality problems. Previous research found problems associated with inadequate coordination of benefits and services; however, these studies have largely used quantitative approaches and focused on providers–few studies have explored the perspective of dual eligible patients. In an effort to improve care and reduce costs, North Carolina (NC) developed a Patient-Centered Medical Home (PCMH) model centered on a continuous relationship with a primary care provider who is responsible for coordination of services and addressing patients' health care needs by providing direct services or arranging care with other qualified professionals. This article presents the history of the NC PCMH model and describes results of an in-depth qualitative investigation of dual eligible patients' experience of care with this model. Experience of care was captured through 11 focus groups with 61 dual eligible patients. Focus groups were audio recorded and analyzed using NVivo 9 software, which supported the categorization of data into themes based on frequency and intensity of discussions. Findings indicate that dual eligible patients were generally satisfied by the care received through the NC PCMH program. However, many patients reported continuity of care issues, problems accessing necessary prescription drugs, and difficulties navigating the health care delivery system. Findings also revealed that conflicting state and federal Medicaid drug co-pay policies confused and limited access for some patients.

Although individuals enrolled in both Medicare and Medicaid (dual eligibles) are among those with the nation's greatest need, at $300 billion per year, their care is also expensive and beset by quality problems.¹ While many have multiple chronic conditions and are at risk of poor health, dual eligibles are less likely than Medicare beneficiaries to report a usual source of care; they also face a greater likelihood of needing long-term services and supports (LTSS), emergency care, and hospitalization.^2,3 Compared to Medicare enrollees, dual eligibles are at greater risk of not receiving certain tests, chronic care management services follow-up, and preventive care.^4,5 They also experience a higher degree of other unmet health care needs, such as ambulatory and long-term care services, and assistance with activities of daily living.^6,7 Health policy researchers find these problems to be directly associated with inadequate coordination of benefits and services, and recommend enhanced care integration for dual eligibles.

The North Carolina (NC) patient-centered medical home (PCMH) model was originally designed as a relatively economical approach to coordinating the care of Medicaid enrollees, and was later enhanced as a pilot program for the dual eligibles.⁸ Recent research indicates reduced risk-adjusted readmission rates for Medicaid beneficiaries in the NC PCMH program who received transitional care for complex chronic illnesses, and significant cost savings on care for those with multiple chronic conditions.^9,10 This success led to a 2012 expansion of the NC PCHM to a multipayer model serving not only NC's Medicaid and dually-eligible enrollees but also those of commercial health plans. The NC PCMH model has been so well received that it is expanding to other states: the program recently contracted with the state of Arkansas to provide technical assistance to enhance efforts of that state's PCMH program.

Central to the NC PCMH program is the patient's relationship with a primary care provider (PCP) who leads a team that aims to coordinate care across the health system and community. The NC Medicaid primary care case management (PCCM) payment methodology supports this work by compensating participating PCPs for delivering comprehensive primary care that includes care management activities. For high-cost dually-eligible patients, care managers strengthen links between the medical system and community supports.

Previous research on care for the dual eligible population has not explored the patient perspective.¹¹ This study sought to understand the NC PCMH program as a model to provide care to dual eligible patients who live in the community, and to examine their perspective in receiving care under this model.

Methods

This research uses a hybrid approach combining a program history with an in-depth qualitative examination of dual eligible patients' perceptions of care. First described will be the development of the NC PCMH program to provide rich context and program details on its statewide population health and care management strategies. Then the research findings on the care experience of dually-eligible individuals in this program will be presented, including how they perceive coordination of care. Finally, this research addresses patients' perspectives on barriers to coordinated care. The program history was based on published articles, an Internet document review, and 6 in-depth interviews with program staff. Patient experience of care was captured through 11 focus groups with a total of 61 dual eligible patients. The framework for understanding patient experience with health care delivery is based on the quality framework defined as the right care, at the right time, in the right places.¹²

Purposeful sampling identified high population density counties in the Raleigh-Durham area to conduct the research. Starting with officials at Community Care of North Carolina's (CCNC) central location and a local network office, researchers used the snowball method and convenience sampling to identify medical practices and community centers willing to host the focus groups. In total, 3 medical practices and 5 community-based settings agreed to participate. For a contextual understanding of each hosting practice and center, the researcher conducted an Internet search and corresponded via e-mail with NC state officials and researchers. Basic data were collected from the hosting facilities themselves, such as the size of the facilities, services provided and high-level demographic information about patients or consumers served.

Twenty-three dually-eligible individuals participated in 1 of 3 focus groups held at medical practices that provide health care services to these individuals. Forty-eight dually eligible individuals participated in 1 of 5 focus groups held at community-based settings that provide support services. Selection criteria for participants included that they were dually eligible and received care through the NC PCMH program. Recruitment was conducted through the use of flyers that described the research and receipt of a $50 gift card, which were posted in the waiting room of participating practices or community-based settings. Interested individuals signed up at the front desk or called a number at the practice to express their desire to participate. In order to assure a diversity of perspectives, focus groups and interviews were deliberately conducted in a variety of locations and settings; staff members were excluded.

Focus groups were conducted at these sites between June and September 2012, following George Washington University Institutional Review Board-approved expedited review procedures. To encourage robust discussions, the sample population included 2 homogenous subgroups: ages 65 years and older, and younger than age 65. Topics included the patient experience of care coordination, relationship with provider and the health care team, and access to community services. The interviews lasted about 90 minutes and were audio recorded. To enhance transcript quality, written notes highlighted topics discussed at length or with great animation.

NVivo 9 software (QSR International Pty Ltd, Doncaster, Victoria, Australia) supported the categorization of data into themes based on frequency and intensity of discussions. Triangulation bolstered research validity; focus group data, care manager interview data, and a thorough document analysis were utilized to study the same issue from many perspectives. The program history was confirmed by CCNC's director of operations and the vice president for communications. Further, a secondary review of themes by an external researcher enhanced validity of findings.

Evolution of the NC PCMH Program

This section discusses the evolution and functioning of the NC PCMH program in order to show how, over time, it has changed to support patient experience. The NC PCMH program is administered by a nonprofit organization of community provider networks called CCNC. By 2013, all of the state's 100 counties participated in CCNC through 14 regional nonprofit networks of 1600 medical homes and 5500 physicians.¹³ Approximately 1.4 million people are served, including 1.31 million through Medicaid and the Children's Health Insurance Program.

In 1991, experiencing rising medical costs, the NC Department of Health and Human Services contracted with PCPs to implement PCCM instead of hiring a commercial managed care organization. NC received approval to implement a PCCM pilot in certain counties through a Medicaid Competition Demonstration.¹⁴ Participating PCPs were reimbursed for acting as gatekeepers of specialty services and coordinating care for women and children enrolled in Medicaid.¹⁵ A year later, the NC program expanded to 9 counties; CCNC was formed and committed to an enhanced PCCM based on the medical home model. In 2001, the program launched state wide. Six years later, CCNC's role was expanded to manage NC's Medicaid-enrolled elderly and disabled, its dually-eligible and Medicare-only populations; this effort grew through NCS participation in a Medicare Health Care Quality (MHCQ) demonstration launched a few years later.¹⁶

Integral to this work, CCNC's central office identifies high-risk patients for care management services and engages the networks in statewide population health strategies, quality improvement (QI) programs, and disease management initiatives.¹⁷ These approaches are implemented by care delivery teams who manage patients with complex and chronic disease. Launched in 2007, the NC PCMH adopted a comprehensive chronic care model, which required each CCNC network to establish interdisciplinary teams comprised of clinical coordinators, case managers, and pharmacists. The teams evaluate and address the needs of individuals with comorbidities and proactively manage chronic illness and preventive care. The networks utilize a standardized approach to screening, assessment, and care planning. Partnerships between care teams and CCNC care managers support discharge hospital planning, as does the real-time identification of patients admitted to the hospital or emergency department. A pharmacy team works collaboratively with participating practices on complex pharmacotherapy regimens.

These care teams are supported by leveraging information technology. CCNC's Informatics Center (IC) supports web-based patient-level health records for PCPs and care managers, utilizing data from various care settings and pharmacy claims. It also sustains a pharmacy application for electronic chart review and to identify gaps in medication care. Through a secure online portal, participating providers from a variety of care settings across NC may view a patient's visit history and pharmacy claims. Further, the IC supports population health through the generation of reports on hospital visits, performance indicators, and regional and statewide QI evaluation programs.

CCNC creates a learning environment for PCPs engaged in population health, which is consistent with an effort to raise the overall level of quality of care provided. Participating providers must adhere to evidence-based best practice guidelines and report clinical data to CCNC's central office to inform statewide QI and population management initiatives.¹⁸ CCNC's board of clinical directors includes representatives from each participating network. The board identifies and selects measures and standards used to assess performance of provider practices and networks. The networks submit performance measurement data to CCNC for analysis and the development of aggregated cost, utilization, and quality reports based on state and national benchmarks. These reports are shared with participating practices for QI and evaluation initiatives. Care managers act as CCNC–provider liaisons. In addition to coordinating patient care, they deliver targeted provider education on best practices, assist with collecting and reporting practice-level performance measures, and support the efforts of local CCNC networks aiming to meet their utilization and performance goals.

The care manager and QI efforts of the NC PCMH are supported by managed fee-for-service payments, which are supplemented by care management fees paid to contracted PCPs. Participating PCPs receive $2.50–$5 per member per month (PMPM) and the networks collect $3–$5 PMPM. At 95% of Medicare rates, NC's high Medicaid reimbursement levels are crucial to provider willingness to accept Medicaid patients.¹⁷

Patient Experience of the NC PCMH Program

Demographics of participating patients

Basic demographic characteristics of those sampled were collected through a 1-page survey completed by focus group participants just before the discussions. Survey results are summarized in Table 1. In certain ways, participants were typical of the 9.6 million dual eligibles nationwide.¹⁹ The literature notes that by definition, dual eligibles are low income, and a disproportionate share are female and of ethnic and racial minorities.²⁰ These characteristics were consistent in the research sample. Further, community-dwelling focus group participants were typical of NC's Medicare-Medicaid beneficiaries in regard to their living situation, as nearly 83% of these individuals reside at home.²¹

Table 1.

Demographics of Participating Dual Eligibles (N = 61)

	<65 year old focus groups	>65 year old focus groups	Total
No. of participants	23 (38%)	38 (62%)	61
Sex, n (%)
Female	17	32	49 (80)
Male	6	6	12 (20)
Age, n (%)
Mean	47	74	N/A
Median	46	73	N/A
Educational Attainment
Some/all college	12	11	23 (38)
HS or GED	8	8	16 (26)
Some HS	1	13	14 (23)
8th grade or less	0	5	5 (8)
Not reported	2	1	3 (5)
Racial mix, n (%)
Asian	0	1	1 (2)
Black	8	20	28 (46)
White^a	14	16	30 (49)
Not reported	1	1	2 (3)
Hospitalization rate, n (%)
Hospitalized in past 12 months	7	14	21 (34)
No hospitalization in past 12 months	13	21	34 (56)
Not reported^b	3	3	6 (10)
Self-reported health status, n (%)
Poor health	2	3	5 (8)
Fair health	7	12	19 (31)
Good health	7	13	20 (33)
Very good or excellent health	4	5	9 (13)
Not reported	3	5	8 (13)

The White category includes 1 person who reported race as white mixed with Cherokee.

Nearly 10% did not answer question, so hospitalization rate could have been higher.

GED, general equivalency diploma; HS, high school.

However, those who were sampled were atypical of dual eligibles nationwide in 2 ways. Although most dual eligibles tend to attain low levels of educational achievement, this was less true of the sampled group. For example, although 49% of dual eligibles as a whole have not earned a high school diploma, this was true of 31% of all focus group participants. Although only 23% of dual eligibles as a whole have received some college education, nearly 38% of those sampled had attended some college; of this subgroup, 32% had received a 4-year degree or an advanced degree.²²

Differences also were seen in self-reported health status. Although previous studies found that 1 in 5 of the nation's dual eligibles report poor health, the self-reported health status of the sample group was better, with only 8% reporting the lowest level of health status.² Further, although the Congressional Budget Office reports that more than 40% of dual eligibles rely on LTSS, this was not the case for this sample, none of whom had reported receipt of LTSS.²⁰

Specific examples of the disabilities of focus group participants younger than age 65 include: diabetes, depression, traumatic brain injury, epilepsy, blindness, kidney failure, hearing loss, and other impairments that substantially limited 1 or more major life activity. Multiple individuals in the younger than age 65 focus groups were diagnosed with diabetes and with depression, consistent with research that shows this population has higher rates of medical and behavioral health conditions than the older than age 65 population. Indeed, these findings were not unexpected given that 60% of NC beneficiaries have multiple chronic conditions, 20% have more than 1 mental/cognitive condition, and nearly 40% have both a physical disease and mental condition.²¹

Sampled patients' perspectives

This research strives to understand, from the patient perspective, if and how care is delivered through the NC PCMH program. The research asks: Is the right care delivered at the correct time, and in the right places? What are the barriers to necessary care?

High-quality clinical care?

From the patient perspective, one aspect of the “right care” is access to needed care. Nearly all reported adequate PCP access and receipt of a sufficient amount of medical equipment, services, and tests through the NC PCMH program. Further, nearly all participants reported that the “right care” provided relief of symptoms and/or disease resolution. Examples included controlled diabetes and high blood pressure, resolution of bronchial breathing problems, and improved mental health through antidepressant use. However, patient reports were mixed on the sufficiency of preventive care, and 5 suggested that lobbying their PCP was required to get needed care. One possible explanation for these experiences could be that participants may not be familiar with the latest preventive services guidelines, which have changed over time. Although nearly all participants reported robust access to specialist referrals, one exception was mental health, which has undergone successive iterations of reform for decades in NC. Access problems with mental health care were discussed in 4 focus groups, and the broad topic of mental health arose in 8 of the 11 focus groups. (See Table 2 for focus group participant quotes.)

Table 2.

Quotes from Dual Eligible Patients on Care Received in the North Carolina Patient-Centered Medical Home

Quality element	Topic	Patient quote
Right care/right time/right setting	Access to Mental Health Care	“I had to find a psychologist or a social worker, something for therapy. And I spent two weeks on the phone talking with different therapists who would take both Medicaid and Medicare, who was willing to see me just once a month. And it's not easy to find a caregiver in the mental health system.”
Right setting	Navigating Health Facilities	“You got to go all the way over to the right hand side to the receptionist. If you go straight ahead to the window, they won't talk to you… Even if there is no line. They will do nothing for you if you go to the right.”
Right care	Care Needs	“If it's something you need, the doctors here will try their best to find out some way for you to get it.”

Focus group discussions explored participants' perspectives about high-quality clinical care, highlighting perceptions of care. Four individuals noted receipt of quality care when their PCPs conducted thorough examinations and 4 recognized PCP care quality when medication side effects were addressed promptly. In all focus groups, participants (24 in total) recognized the provision of skilled interpersonal care when they felt unhurried during their office visit, and when their PCPs actively listened to them and engaged in a humane and empathetic manner. Examples were when PCPs explored patient needs, involving them in medical decisions, especially medication management. Although nearly all participants reported satisfaction with the information that their PCP provided, 1 did not understand information provided with prescriptions and 3 used the Internet for clarification.

Care at right time?

The duration of time required to access primary care services also was considered. Although most participants reported a quick and easy process, 4 said scheduling a PCP appointment could be time-consuming and difficult; this is somewhat problematic because PCP access is a principle of the PCMH model. Although nearly all noted PCP visits of appropriate duration, reports about the amount of PCP “face time” varied widely. For example, one 32-year-old sight-impaired man was satisfied with spending just 5 or 6 minutes with his PCP, while a 75-year-old woman reported that 15 minutes was not enough. Other participants reported that their visits with their PCPs lasted between 20 minutes and an hour.

Another aspect of care delivered at the right time is related to access to urgent care. This topic arose in 6 focus groups, and most participants noted that their urgent care needs were addressed with prompt access to care through their PCP's office. This is perhaps not surprising given that all patients have access to 24-hour on-call PCPs, which is central to the PCMH model. Further, the timely provision of transitional care services (after hospital discharge) is a key aspect of well-coordinated care. Two participants required such services when moving from the hospital to another care setting; 1 reported the timely receipt of these services, and 1 did not.

Care in right setting?

Physical access to primary care is a determinant of whether patients receive care in the right setting; this refers to the ability to get to the facility, as well as move within the space. Generally those who did not need public transportation reported that their PCP's office care was located in the “right place.” However, a scarcity of public transportation represented a barrier for others. Nonetheless, upon arrival at their PCP's office, participants in 7 of the 11 focus groups were pleased with the office setting, and reported that it was clean, and/or not too crowded, and/or too noisy. Although there were reports that a wait to see the PCP was required, no patients reported that that it was too long.

There were multiple experiences which, while not representative of participating dual eligibles, bear discussing because they were especially problematic for individuals. Several dual eligible patients with vision and/or physical impairments experienced difficulty navigating physician offices and other points of care. There also were mixed reports about continuity of care between settings. Multiple participants expressed concerns that their PCPs were not providing care during their hospital visit, which suggests at least some felt distressed by provider discontinuity between care settings.

Continuity of care?

Continuity of care occurs through a cooperative relationship between the patient and physician, the multidisciplinary care team leader. Of all the participants, 45% had visited the same PCP for 5 years or more, and 20% had seen the same PCP for 1–5 years. Although 27% had been served by their current provider for 1 year or less, none expressed difficulties identifying a PCP willing to treat them. However, 2 of the 61 participants reported provider discontinuity at an area teaching hospital. One 53-year-old man who was in a serious car accident reported despair following his routine visits at the hospital because he was required to describe his traumatic medical history repeatedly. A 34-year-old woman who also was in a disturbing car accident described similar psychological effects.

Another aspect of care continuity is inter-provider communication. When asked about communication between various providers, two thirds of participants said that their PCPs received medical records following their hospitalization or receipt of outpatient or mental health services while one third lacked confidence that this was the case.

Barriers to necessary care?

Research participants experienced a diverse array of barriers to accessing necessary care. Financial barriers to receiving prescription drugs were discussed in great detail in 5 of the focus groups. These barriers seemed to result at least in part from competing federal and state co-pay policies. Although the NC Medicaid program charges enrollees co-payments on drugs, federal Medicaid policy prohibits providers from denying prescriptions to dual eligibles unable to cover co-payments. Although participants were not technically required to cover prescription co-pays, 8 individuals perceived payment as obligatory and experienced financial barriers as a result.

A lack of clarity about additional financial policies related to medication seemed to lead to additional confusion. The 8 individuals from the aforementioned focus group discussed the expense of prescription drugs, and whether NC policy enabled Part D drug plan changes when medication costs are prohibitively high. Several participants were unaware that changing their plan midyear was possible in the state. This topic was covered in 2 other groups.

Financial costs were not the only obstacle to receipt of the appropriate medication. Patients in 7 of the 11 focus groups reported that they did not receive their prescription drugs in a timely manner as a result of PCPs/office staff delays or those associated with the state's Medicaid prior authorization process. Two individuals noted potentially grave medication errors. The first was a 97-year-old woman who reported treatment by a doctor lacking information about the other medications that she was taking; the consequences of drug interactions could have been fatal. The second was a 33-year-old woman who explained that a medication error could have been avoided if a new PCP had responded appropriately when she informed him of a serious drug allergy.

Many individuals were confused about coverage and/or cost of preventive services and vaccinations. These participants expressed confusion about variation in vaccine co-payments. The Affordable Care Act (ACA) authorized that certain vaccines (flu, pneumonia, and hepatitis B) be provided free of charge, but Medicare recipients must pay co-payments for other vaccines. Further, although vaccines are covered by Medicare Part D drug plans, the level of cost sharing varies widely; this research suggests that the variation has led to misunderstandings resulting in reduced access. Finally, individuals in separate focus groups were puzzled about which services were covered by Medicare versus Medicaid.

This research found that barriers to accessing necessary care resulted in similar outcomes for focus groups participants as has been reported in other research about dual eligibles. Research findings about quality of care also generally echoed previous studies of dual eligibles, including inadequate preventive screenings, follow-up therapies, and testing.^4,5

Discussion

This research indicates that dual eligible patients were generally satisfied with the care received through the NC PCMH program, a strategy to manage the quality and cost of care. Care should be taken in interpreting these qualitative findings, which are not generalizable. Participating networks and practices are not necessarily representative of those across the state, and research participants, while seemingly similar to other community-residing Medicare-Medicaid beneficiaries in NC, were somewhat atypical of the larger dual eligible population in the nation. Nonetheless, these findings provide suggestions about how to improve care for this population.

Continuity of care issues, problems accessing necessary prescription drugs, and difficulties navigating the health care delivery system were noted frequently enough to warrant attention. Care continuity could be improved by bolstering care coordination. For example, NC should take advantage of a CMS process for state Medicaid agencies to request timely Medicare Parts A, B, and D data to support the care coordination of Medicare-Medicaid enrollees. An analysis examining the provision of care coordination services for more of NC's dual eligibles could determine whether and how this strategy could significantly improve prevention efforts and avoid downstream costs associated with out-of-control chronic conditions and/or complex diseases. Care continuity could potentially be improved through the facilitated exchange of clinical information within the NC PCMH program.

The findings suggest that conflicting state and federal Medicaid drug and vaccine co-pay policies confused and limited access for at about 1 in 4 research participants. Given the characteristics of Medicare and Medicaid beneficiaries, it is not surprising that the vast majority of focus group participants did not identify internet research as a way to answer their questions. CMS should be mindful of this as it continues to develop its current education campaign regarding the fact that Medicare-Medicaid beneficiaries are exempted from Medicare cost-sharing liability. This research also suggests that prohibitively high co-pays have inhibited access to needed vaccines and other medications; a greater awareness that NC state policy enables dual eligibles facing prohibitively high medication costs to change Part D drug plans at any time is needed.

Broader delivery system issues also require mitigation, especially for mental health services. Research participants and the program history indicate that access to mental health providers has been problematic. The state should continue its push to improve access to mental and behavioral health providers, while Congress should renew efforts to expand the types of currently authorized Medicare mental health providers.²³ Given the potential implications for federal and state-level discussions about mental health reform, further research is required to understand the nature of unmet mental health needs.

This research also provides insights for improving the design and implementation of the NC PCMH program, which may be of particular interest to other states developing care coordination strategies to lower cost and improve care quality for vulnerable individuals such as the dual eligibles. CMS recently announced funding awards of up to $360 million for models with this aim.²⁴ It is also encouraging that Medicare recently started funding physician-provided care coordination services for enrollees with 2 or more chronic conditions, a strategy implemented in NC's and other states' PCMH programs. Given the substantial level of Medicare funding dedicated at expanding care coordination, efforts to improve care delivery through the use of this strategy could have important and significant benefits to beneficiaries.

Author Note

At the time this research was conducted, Dr. Grantham was a doctoral student at George Washington University, Washington, DC. The views represented herein do not reflect the views of any Federal Agency.

Footnotes

Author Disclosure Statement

Drs. Grantham, Goldberg, and Infeld declared that there are no conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors received no financial support for this article.

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