Primary care does not exist within a vacuum. Rather, it is a reflection of societal norms and values. Many primary care settings today are structured in a way that prevents the team from understanding and addressing the context in which a patient lives. An approach to care limited in this way perpetuates disadvantage and health inequity. Institutional inequalities, including structural racism, sexism, and classism, that are present throughout American society also exist within primary care today (Feagin and Bennefield, 2014; NASEM, 2017). Over time, these influences have led to a dominant paradigm in primary care that is clinician centric and paternalistic, mirroring the broader U.S. health care system. The need to shift that paradigm has become even more clear given the unequal impact that the COVID-19 pandemic has had on disadvantaged communities and the current acceleration and amplification of long-standing calls for social justice and the dismantling of structural inequities, including racism, that are woven deeply within the fabric of society (Morse et al., 2020).
Fortunately, primary care has seized on opportunities to shift toward an approach that is more grounded in tenets of care that are crucial to high-quality primary care: relationships with the people, their families, and the communities being served; and equity, which acknowledges and empowers those people, families, and communities. These two tenets represent an important transition in how primary care needs to move forward in the twenty-first century. While it will require a shift in the dominant paradigm to accelerate this forward progress, it is important to acknowledge the long history and many successful models (current and historical) based on this approach (Geiger, 2002; IOM, 1983; Kark and Kark, 1999; National
Commission on Community Health Services, 1967; Rosen, 1971; The Folsom Group, 2012). Box 4-1 summarizes the history and outcomes of one of these models, the patient-centered medical home. (See Chapter 9 for more on this model’s financing and outcomes.)
Crossing the Quality Chasm: A New Health System for the 21st Century (IOM, 2001) helped highlight the need to shift the paradigm, proposing the concept of patient-centered care and describing it as “respectful of and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions” (p. 40). Since then, momentum has been growing to realize the ideal vision for primary care—moving further toward care that is person centered, family centered, and community oriented (a model developed in the 1940s [Kark and Kark, 1999; Kark and Riche, 1944]) rather than clinic oriented (Health centres of tomorrow, 1947; Susser et al., 1955). This conceptualization focuses on the entire individual over the course of their lifetime and in the context of their family and community, not solely on a specific health issue and a specific
clinical visit. It also emphasizes prevention and well-being, or well care rather than sick care. In addition, this conceptualization recognizes that knowledge accumulated over time—about the person, the family, and the community in which they live—creates a better foundation for recognizing health problems and the delivery of care that is appropriate in the context of other needs individuals might have (Starfield, 2011).
This chapter describes what the committee heard about what individuals seeking care, families, and communities want from primary care and then presents the evidence for why a person-centered, family-centered, and community-oriented approach can deliver on those wants, and in doing so, will benefit all parties involved. The chapter also discusses how primary care can overcome the historical barriers to fully operationalize these concepts, as well as two tenets of person-centered, family-centered, and community-oriented primary care: the primacy of relationships and health equity.
LISTENING TO INDIVIDUAL, FAMILY, AND COMMUNITY VOICES
In a survey that asked people about their personal definitions of health, answers included “not being sick” but also being happy, calm and relaxed, and able to live independently (AAFP, 2018). Separately, community health workers (CHWs) in Philadelphia asked approximately 10,000 people “what do you need to improve your health?” Their answers were not limited to care focused on disease but also included psychosocial support, health behavior coaching, health-promoting resources, health system navigation, and clinical care (NASEM, 2019b). They expressed a desire to eliminate the racism and systematic injustice that permeates their daily lives and influences their experiences with health care, their health outcomes, and their life expectancy (Kangovi et al., 2014a; Williams et al., 2019a,b). These drivers of health mirror epidemiologic studies suggesting that socioeconomic and behavioral factors influence health outcomes more than health care or genetics do (Artiga and Hinton, 2018; Braveman and Gottlieb, 2014; McGinnis et al., 2002). While primary care teams have known this for a long time, primary care has encountered significant barriers—most notably incompatible payment models—that prevent it from moving away from a biomedical, disease-focused model to one that addresses people’s expressed needs and preferences, includes individuals and families more in their care, and responds to the multitude of factors that impact health, including the context of the community (Puffer et al., 2015).
Early in its deliberations, the committee sought input from individuals and families on their experiences with primary care. On June 2, 2020, the committee hosted a webinar titled Patient Perspectives on Primary Care.1 Representatives from AARP, Family Voices, the Migrant Clinicians Network, the National Patient Advocate Foundation, the National Health Council, the University of North Carolina Family Support Program, and the U.S. Department of Veterans Affairs (VA) participated in the webinar and presented on the following topics:
- What does primary care mean to the people, families, and communities your organization represents?
- What can primary care do to better serve them?
Separately, the committee also sought to hear from people directly about their experiences with primary care. Through an online form posted on the project website, people shared their stories, ideas, and experiences
1 The webinar agenda, speaker bios, and archived presentations can be found at https://www.nationalacademies.org/event/06-02-2020/patient-perspectives-on-primary-care-a-webinar (accessed February 14, 2021).
with primary care. Anonymous submissions from this exercise and excerpts from conversations in the webinar appear below to illustrate the importance of relationships and equity in primary care and reinforce the importance of organizing primary care in a way that honors and responds to individual and family preferences, needs, values, and goals (Greene et al., 2012).
Continuity of Relationships
A defining aspect of the committee’s vision of primary care is the trusting relationship between the interprofessional care team and the person seeking care. Patients and advocacy groups provided multiple descriptions of the importance of relationship building. One woman from New York views her primary care clinician as a whole-person health expert and not just someone that completes an annual exam. Others reported that if it were not for primary care, no one would know—or care about—their overall health. The primacy of this relationship was described by a 33-year-old woman from rural Iowa:
I live in a rural community, and my primary physician is truly a “one-stop shop” for all of my health care questions. Not that all services and supports are provided by my physician, but there is always a way to ask a question and be referred to what I need.
Part of this trusting relationship involves an element of partnership and inclusivity. People felt positive about feeling heard and negative when their care remained unaligned with their personal preferences and priorities. The following two submissions are, respectively, from a 52-year-old in Ohio who illustrates the importance of being heard and a 77-year-old woman in Massachusetts who remarks on a breach of trust that compelled her to seek care elsewhere:
I like that my doctor and I have a long history together. He listens to my suggestions if I have a medical issue and tries to address them based on my symptoms or issues.
I have been living in a nursing home for 18 1/2 years. A medical director was my primary care physician here for many years. Then, one year, I read my medical record and saw that I was on nine unnecessary medications—either for medical conditions I did not have or for which treatment wasn’t needed. This physician did not have the expertise I needed, so I now go outpatient for primary care. He never apologized either.
Gwen Darien with the National Patient Advocate Foundation spoke to the primacy of relationships and said, “it’s very fair to say … that health
care relationships used to just be doctors and patients, but we have certainly gone well beyond doctors and patients in our health care.” She went on to describe the importance of the relationship with the person who coordinates a patient’s care and of a trusting relationship that patients can depend on, particularly those with multiple health conditions. She also questioned why, when people get into the U.S. specialist system, there is no transition back into primary care, which should be about follow-up and continued relationships.
Marc Boutin, chief executive officer of the National Health Council, stressed that taking time to understand people’s circumstances and personal goals is the basis of relationship building. With this knowledge, the care team should design care that can help the person and their family achieve the goal that was most important to them. Integrating these two processes would dramatically change how health is viewed and help us get the outcomes that matter for the person and family.
Jennifer Purdy from the VA illustrated important components of the clinician–patient relationship and how the VA health system solicits feedback to better understand that relationship. The VA asks for the patient’s perspective on what it was like before the visit and how the patient felt they needed to prepare for it. They also listen to the patient’s perspective of the experience of arriving at a facility or clinic to receive care or even clicking the telehealth button to start an appointment. They ask questions about what it was like to have care in the exam itself. Veterans have reported that they want to feel heard and to be able to trust their clinician without explaining themselves over and over again. They want to know what comes next and understand their role in their whole health care. The VA also inquires about what happens after the visit and when the person returned home, including how fast they would see test results that mattered to them and their role in receiving the next parts of their care.
Amy Liebman from the Migrant Clinician Network also talked about building relationships when a person’s residence is not fixed. She stated that health systems need to be redesigned to ensure that the relationship can be maintained even with challenges of migrant populations. The ultimate goal, she said, is not to interrupt the health care relationship. The COVID-19 pandemic has provided an illustration of how telehealth has enabled primary care relationships to be maintained and even flourish when office visits are not possible.
While “family” in the 21st century can mean different things to different people (and many people may not have anyone in their lives that they consider to be part of their family), the patient advocacy webinar panelists
and individuals from the community presented many illustrations of the importance of the family in the delivery of primary care. That same 33-year-old woman from Iowa with the “one-stop shop” physician followed up to write that:
My other experience with primary care that I would like to share, is the immense value when my doctor has knowledge of my family health. I was pregnant at 19 years old, and one great gift was that my daughter and I received care from the same doctor. We could attend appointments together (and did for many years) which reduced my burden of travel and time. The doctors could respond to our combined needs—the [e]ffect the health of another family member has on your health could be addressed, etc. In my dream for the future, primary care could be provided knowing the full context of the families experience and therefore be able to connect and respond to the needs and supports beyond just the individual in the office chair.
But others see the role of primary care through different lenses. Another individual from California submitted this:
Since I’m a fairly healthy adult, I only use primary care episodically for minor acute issues. My perspective about primary care has more to do with helping my mother manage her care. There’s much to be desired in terms of how involved the provider really wants to be in her overall care. It’s not clear that the provider wants to go above the basics.
Allysa Ware from Family Voices spoke about her organization being a network of families with diverse experiences that share on-the-ground information on what is happening in primary care visits. In focus groups, Family Voices listened to families who felt doctors were just going through a checklist without a meaningful relationship. One family member said the doctor was checking off things on a paper but not personalizing it to their child and did not take environmental factors into account. The doctor did not offer suggestions for helping, seem to take her concerns seriously, or say anything to lessen those concerns. Family Voices often heard that visits are fast and families do not feel like partners. One theme was that the primary care team took a wait-and-see approach, instead of really listening to the parents. The fragile relationship was illustrated by families reporting fear that if they raised concerns or disagreed with their clinician, it would impact the care their child received.
Barbara Leach, a special projects coordinator in the University of North Carolina School of Social Work, reinforced the importance of primary care and family support with children and youth with special needs. Parents start out looking to their primary care physician, their family doctor, to
make sure their child gets what they need and serve as the gatekeepers of information about their child. She also pointed out the important role of primary care in coordinating care with different specialists. Parents expect primary care clinicians to provide education and information about their child’s challenging conditions and referrals to specialists and connect the family to community resources and supports. She described the role of primary care clinicians as comprehensive and conducted in partnership with the family, understanding the problems families face and helping them to learn and support their child’s well-being.
The panel discussed at length the important role that primary care plays in connecting people with community resources and addressing issues related to the community. These resources (e.g., social services, nutrition assistance programs) are fundamental to whole-person health but are generally considered to be separate from traditional, disease-focused medical care. Ware described that families often do not know which way to go and that social determinants of health (SDOH) play a major role in the ability to navigate the community. The panelists gave examples of clinicians not always being sufficiently knowledgeable about the community to connect someone to resources that could help them, and people submitting their primary care experiences online also expressed the need for strong connections between primary care and additional health and community resources. One individual, a 31-year-old, non-binary woman from Massachusetts, experienced a rotating door of clinicians—six since 2017—and found that the majority avoided care related to mental health and eating disorders and were usually unable to create a safe care environment.
Seeking primary care is difficult because I do not trust that doctors want me to have a healthier body, just a smaller one. I am queer and transgender, so safety comes to mind as well as [whether] the office will be respectful of my pronouns, my body, or my family. I have mental health needs, and many doctors do not want to touch or talk about that beyond the small survey at the end of visits. And it is clear despite the many and serious effects that eating disorders can have on the body, that PCPs are not trained in how to work with patients in ED recovery.
ACHIEVING PERSON-CENTERED CARE
The terms “patient-centered” and “person-centered” are often used interchangeably but are conceptually different. Moving from patient-centered
to person-centered care represents an evolution of primary care to focus on individual people in the context of their lived experiences, family, social worlds, and community (Starfield, 2011; van Weel, 2011) (see Table 4-1).
The World Health Organization (WHO) defines people-centered care2 as
focused and organized around the health needs and expectations of people and communities rather than on diseases. People-centered care extends the concept of patient-centered care to individuals, families, communities and society. Whereas patient-centered care is commonly understood as focusing on the individual seeking care—the patient—people-centered care encompasses these clinical encounters and also includes attention to the health of people in their communities and their crucial role in shaping health policy and health services. (2020b, p. 12)
According to WHO’s Framework on Integrated People-Centered Health Services (WHO, 2016), a people-centered approach is needed to ensure the following:
TABLE 4-1 The Differences Between Patient-Centered Care and Person-Centered Care
|Patient-Centered Care||Person-Centered Carea|
|Generally refers to interactions in visits||Refers to interrelationships over time|
|May be episode oriented||Considers episodes as part of life-course experiences with health|
|Generally centers around the management of diseases||Views diseases as interrelated phenomena|
|Generally views comorbidity as number of chronic diseases||Often considers morbidity as combinations of types of illnesses (multimorbidity)|
|Generally views body systems as distinct||Views body systems as interrelated|
|Uses coding systems that reflect professionally defined conditions||Uses coding systems that also allow for specification of people’s health concerns|
|Is concerned primarily with the evolution of patients’ diseases||Is concerned with the evolution of people’s experienced health problems as well as with their diseases|
SOURCE: Starfield, 2011.
2 WHO uses “people-centered care” instead of “person-centered care,” but both terms represent the same concept.
- Equity: For everyone, everywhere to access the quality health services they need, when and where they need them. (See section below for more on this subject.)
- Quality: Safe, effective, and timely care that responds to people’s comprehensive needs and is of the highest possible standards.
- Responsiveness and participation: Care that is coordinated around people’s needs, respects their preferences, and allows for their participation in health affairs.
- Efficiency: The assurance that services are provided in the most cost-effective setting with the right balance between health promotion, prevention, and in-and-out care, avoiding duplication and waste of resources.
- Resilience: Strengthened capacity of health actors, institutions, and populations to prepare for, and effectively respond to, public health crises.
The essence of person-centered care is that it extends beyond any one clinical encounter and involves continuous and holistic knowledge of patients as people, their families, their social world, and the communities in which they live and work. This knowledge accrues over time and is not specific to disease-oriented episodes. Furthermore, this knowledge, and the time spent attaining it, strengthens the relationships between the primary care team and the people seeking care. Compared to patient-centered care, person-centered care has been shown to lead to agreement on care plans, better health outcomes, and higher patient satisfaction (Ekman et al., 2011). The WHO Astana Declaration in 2018 reiterated and refreshed commitments made by the world’s governments to primary health care (WHO and UNICEF, 2018), which is the integration of primary care and public health, with the collective goal of caring for populations. This puts the goals of this report squarely in line with the Astana Declaration and the commitments of the U.S. government as one of its cosigners.
The Role of the Individual
Activating and empowering individuals to be a part of their own care team should function cyclically and iteratively—as people become more knowledgeable and confident in their own health care and continue to experience success, they may take on increasingly sustained and eventually proactive roles. While empowerment has become a highly visible initiative in public health and policy reforms in the past decade (e.g., some provisions of the Patient Protection and Affordable Care Act [ACA]3 encourage engaging
3 Patient Protection and Affordable Care Act, Public Law 111-148 (March 23, 2010).
care-seekers in this way), the methods of reaching person-centered care can and should look different depending on context (Chen et al., 2016). One foundational tenet, though, is respecting people as experts in their own lives (Kennedy, 2003). The Chronic Care Model explicitly recognizes that “informed, activated patients” are needed to improve health outcomes for individuals with chronic diseases. One of the six components of that model is self-management support (Bodenheimer et al., 2002). Apart from engaging individuals in their own care, understanding the individual’s goals for their care, particularly as they age, can be especially important. Naik and colleagues (2018) noted that “eliciting and documenting the personal values of older, multimorbid adults is uncommon in routine care, despite playing a central role in person-centered care.” Models for capturing the goals, values, and preferences of older adults in the primary care setting have been shown to be feasible (Blaum et al., 2018; Naik et al., 2018).
The Role of Family and Informal Caregivers
Family members and other informal caregivers may not be licensed to provide care, but their voice and presence is an important component of person-centered primary care and can improve health outcomes, health care quality, and the overall care experience for people and their families. Primary care that includes family members or companions is associated with improved self-management, satisfaction, communication, and understanding (Cené et al., 2015; Rosland et al., 2011). In fact, an individual’s most important health care resource may be their family or informal supports (if they have them) (Cole-Kelly and Seaburn, 1999). Research shows that most individuals prefer clinicians to involve their families and other informal caregivers in their health care (Andrades et al., 2013; Botelho et al., 1996). Family members play a supportive role in most consultations with clinicians (Andrades et al., 2013; Sayers et al., 2006), as well as helping their loved one to navigate the increasing complexity of health care systems, including making and keeping appointments and following up on referrals (Andrades et al., 2013; Botelho et al., 1996; Igel and Lerner, 2016; IOM, 2008). In addition, a family member or other informal caregiver can be a valuable source of health information and insights about the home and community environments that clinicians may not get from the person seeking care.
Family members can take many roles aside from providing companionship and comfort when they accompany a loved one to an office visit (Brown et al., 1998; Clayman et al., 2005; Cornelius et al., 2018; Schilling et al., 2002). As an advocate, they can communicate the person’s needs and concerns and may translate or interpret in situations with a language gap, especially in emergencies (Rimmer, 2020). They can also act as an additional set of ears to ensure the person understands their
disease, medications, procedures, and treatments, which may result in better outcomes (Whitehead et al., 2018). Family members can help someone make decisions that are aligned with their personal and cultural beliefs. For chronic illnesses, family members may come to see themselves as the primary care team’s partner in providing care. It is important in such cases for communication to continue to include the individual, particularly when they are capable of making decisions about their care.
Research has identified core facilitators of family-centered care models that benefit the individual while protecting the health and well-being of family members (Kokorelias et al., 2019): (1) development and implementation of care plans that include the family; (2) collaboration between family members and health care clinicians in the delivery of care; (3) education for patients, families, and clinicians; and (4) dedicated policies and procedures that address inclusion of family members (Kokorelias et al., 2019). When implemented, family-centered primary care can reduce admissions, readmissions, and length of hospital stay; increase patient, family, and clinician satisfaction; and improve relationships (Kuhlthau et al., 2011; Park et al., 2018). However, despite the benefits of such inclusive care, family and informal caregivers often need additional support, including more consistent and explicit inclusion in the care team, training, respite, and financial security (IOM, 2008).
Examples from Medical Disciplines
Centering care around the family was a major driver in creating the medical specialty of family medicine in 1969 (Green and Puffer, 2010; Stephens, 2010). In the early years of this emerging new medical and academic discipline, family medicine adapted care based on the biopsychosocial model of care and incorporated unique training elements to strengthen the expertise of primary care teams to think of individuals within the context of their families and their communities (Borrell-Carrió et al., 2004; Engel, 2012; Martin et al., 2004). Today, family medicine teams often care for several members of the same family and have developed advanced skills to incorporate families into care plans and seamlessly care for multiple family members of various ages at one clinic visit or during one hospitalization (Beasley et al., 2004; Flocke et al., 1998). Other primary care medical disciplines not focused on all ages, such as pediatrics (Clay and Parsh, 2016; Jolley and Shields, 2009; Pettoello-Mantovani et al., 2009) and geriatrics, have also embraced family-centered care concepts and practices. Pediatric clinicians who adopt family-centered practices recognize the importance of including family members in evaluating, planning, and delivering treatment and incorporate that ideology into policies, programs, facility design, and
Similarly, geriatricians understand that families can provide information that plays an important role in clinical decision making. Geriatrics care tends to focus on assessing function and cognition and emphasizes the goals of care. Involving the family in assessing and caring for older adults is both important and challenging, particularly for the many who have multiple chronic disorders (American Geriatrics Society Expert Panel on the Care of Older Adults with Multimorbidity, 2012; Boyd et al., 2005; Tinetti et al., 2012). The changes in sensory, cognitive, and physical functions that come with aging may prompt some older adults to need or want to involve family members or close friends in managing their health (IOM, 2008; Wolff and Roter, 2011). A 2015 survey of older adults and their preferences for care found that while nearly 70 percent of older adults manage their own care, they prefer family members, in addition to their clinicians, to be involved in making health care decisions (Wolff and Boyd, 2015).
The Role of Community and Community-Oriented Care
The importance of recognizing community needs in primary care has been described for decades. Community-Oriented Primary Care: New Directions for Health Services Delivery (IOM, 1983, p. 70) defined community-oriented primary care as
an approach to medical practice that undertakes responsibility for the health of a defined population, by combining epidemiologic study and social intervention with the clinical care of individuals, so that the primary care practice itself becomes a community medicine program. Both the individual and the community or population are the focus of diagnosis, treatment, and ongoing surveillance.
People-centered and community-oriented care overlap considerably and link strongly to the goals of WHO and the World Health Assembly in the 2018 Declaration of Astana and subsequent commitments.
Adding community-oriented care to the new conceptualization of primary care addresses the individual’s and family’s cultural and social context as they are embedded within a medical and social neighborhood, rather than from a solely delivery-centric model (Braddock et al., 2013; Buchmueller and Carpenter, 2010; Chokshi and Cohen, 2018; Davis et al., 2005; DeVoe et al., 2009; Driscoll et al., 2013; Edgoose and Edgoose, 2017; Enard and Ganelin, 2013; Etz, 2016; Finkelstein et al., 2020; Kramer et al., 2018; Landon et al., 2012; Possemato et al., 2018; Starfield, 2011; Yoon et al., 2018). In addition, community-oriented care facilitates coordination
between public health approaches and primary care delivery, opening the door for primary care to play a central role in improving community health (Eng et al., 1992), particularly for communities with disadvantaged populations (Cyril et al., 2015; Derose et al., 2019; Shukor et al., 2018).
Benefits of Community-Oriented Care
Community-oriented care improves outcomes in many areas and for different populations, including well-child care (Jones et al., 2018); maternal, neonatal, and child health (Black et al., 2017); and for people with depression (Izquierdo et al., 2018; Ong et al., 2017), obesity (Derose et al., 2019), hypertension (Epstein et al., 2002), and opioid use disorder (Wells et al., 2018). It can also play an important role in reducing health disparities (Derose et al., 2019), decreasing unnecessary use of the emergency department, and increasing the ability for older adults to live independently (Institute for Clinical Systems Improvement, 2014).
Despite the strong evidence that partnering with the community will benefit person- and family-centered care, studies have found that models involving shared decision making, such as integrating the community into primary care, can be challenging to the health care enterprise on practical, structural, and systematic levels. For example, some clinicians have difficulty recognizing the power dynamics between them and other care team members or people seeking care: specifically, the power that inherently comes with the position of health care clinician (Nimmon and Stenfors-Hayes, 2016; Singer, 1989).
Clinicians and systems may see community-oriented approaches as a means to bolster medical care but not necessarily whole-person health (Garfield and Kangovi, 2019). In addition, most challenges are exacerbated by fee-for-service (FFS) payment that incentivizes diagnosing and treating diseases, performing procedures, prescribing medications, and providing care based on traditional biomedical models. For example, a 2018 study found that primary care clinicians felt pressure to focus on diagnosis and treatment and had a hard time imagining how evidence-based, community-partnered programs for disease self-management and prevention could contribute to either of those primary functions (Leppin et al., 2018). The study authors concluded that “primary care and community-based programs exist in disconnected worlds. Without urgent and intentional efforts to bridge well-care and sick-care, interventions that support people’s efforts to be and stay well in their communities will remain outside of—if not at odds with—health care” (p. 1). These words echo those of primary care clinicians nearly a century ago (Burnham, 1920; Susser et al., 1955; Wald, 1911). Such long-standing challenges can be overcome when payment is reformed to better align incentives to support community-oriented care
The Role of the Interprofessional Care Team
Ideally, person-centered care is delivered via interprofessional teams who establish long-term relationships with care-seeking individuals and their families. Achieving this aim requires a team structure that places individuals in the driver’s seat of care that aligns with their needs and preferences. Well-designed teams can support nurturing, longitudinal, person-centered care (Mitchell et al., 2012; Sullivan and Ellner, 2015). A commonly used definition of team-based care is “the provision of health services to individuals, families, [and] their communities by at least two health providers who work collaboratively with patients and their caregivers—to the extent preferred by each patient—to accomplish shared goals within and across settings to achieve coordinated, high-quality care” (Mitchell et al., 2012, p. 5; Okun et al., 2014, p. 46) (see Chapter 6 for more on primary care teams).
The Role of Relationships in Primary Care
Primary care settings continue to expand beyond traditional health care settings and move beyond the walls of clinics and hospitals to community-based settings, such as schools, employment sites, and housing complexes. In addition, primary care is increasingly using technology-enabled care delivery modalities, including telehealth and smartphone apps. As a result, the personal relationship between the person seeking care and the care team providing that care as a foundation for consistency is more important than ever. The person–care team relationship is the “bedrock of value in primary care” and symbiotically related to other components of high-quality care, including whole-person care and coordination (Ellner and Phillips, 2017), and continuity of care (Andres et al., 2016; Rhodes et al., 2014). Evidence of the benefits of a strong relationship to both the individual and care team is well documented; a relationship built on respect and acceptance can lead to patient satisfaction and empowerment, improved outcomes and safety, increased adherence, prolonged engagement, and decreased burnout for care team members (Bogart et al., 2016; Brown et al., 2015; Chaudhri et al., 2019; Pollack, 2019).
Relationships can be healing in their own right, outside of any health services, and personal connections with care staff other than the immediate primary care team, such as front office staff, subspecialists, consultants, and care extenders, also contribute a vital dimension to the patient experience (Kravitz and Feldman, 2017). Over time, relationships encourage the care-seeker to feel understood, hopeful about the future, and comfortable
with the care team or in a health environment (Scott et al., 2008). Comfort and trust are crucial for beginning to reduce health inequities and improve access for marginalized care-seekers, including formerly incarcerated individuals, those who are not U.S. citizens, people with disabilities, veterans, people who are homeless, and communities of color. Trauma-informed care and anti-racism curricula in training, in addition to diversified hiring practices for these teams, improve team members’ abilities to connect with patients, foster a relationship of understanding and trust, and ultimately begin to improve disparities in health access and outcomes (Alsan et al., 2019, 2020; Chaudhri et al., 2019; Garcia et al., 2019; Saha et al., 1999; Shen et al., 2018). Relationships are a function of time, trust, and respect, measures of continuity and longitudinality, and patient-reported outcomes, described in Chapter 8, are an effort to assess relationships systematically as high-value measures of primary care.
Few primary care team members would likely disagree with the importance of relationships, and some evidence suggests that medical school graduates who go into primary care may choose it at least in part for its relationship aspect (Osborn et al., 2017). The reality, however, is less than the ideal, and care teams struggle with time constraints, reimbursement barriers, and administrative hurdles that get in the way of relationship building. While some suggest simply reprioritizing and freeing up time to work on relationships, other more novel options have been conceived including changes to the electronic medical record system, building communication skills, reconfiguring the primary care team, and overhauling payment models so they are compatible with the time and effort needed to build and sustain relationships with people seeking care (AHRQ, 2018; Montague and Asan, 2014; Pollack, 2019).
The patient–care team relationship is all the more important in times of crisis and uncertainty, such as during the COVID-19 pandemic. A survey found that even in the midst of the pandemic, the majority of primary care patients continue to value a relationship with their care clinician, citing desires for being known as individuals, help understanding current events, and a safe environment for asking questions; 83 percent expressed distress at the thought of losing that relationship (The Larry A. Green Center and PCC, 2020). In another wave of that survey, two-thirds of patients most preferred speaking with a member of their primary care team about potential exposure to COVID-19, as opposed to public health officials, hospital workers, or trained community members.4 Additional research found doz-
4 These data come from the third wave of the Green Center’s COVID-19 survey, but were not published in the executive summary. The national aggregate data are available upon request from the project public access file. To request, follow the link on the project webpage (www.nationalacademies.org/primarycare [accessed February 14, 2021]) for contacting the Public Access Records Office.
ens of ways to improve relationships, even during telehealth visits, casting the pandemic as an opportunity to reinvent primary care’s investment in relationships (Bergman et al., 2020).
Even though primary care’s emphasis on relationships is not consistently realized, isolated exemplars do exist. For example, Southcentral Foundation’s (SCF’s) Nuka5 System of Care built relationships into the core of its operational principles and responsibilities. The Alaska Native–owned, nonprofit health care organization also focuses on responding to the wide range of opportunities for feedback from patients, whom SCF refers to as “customer-owners.” SCF succeeds in part as a result of the bespoke tailoring of its system for the people, families, and communities it serves. From the beginning, the entire health system was based on Alaska Native values and needs. This was possible thanks to federal legislation6 that allows for self-governance and the foundation’s reliance on customer-owner surveys and feedback (Gottlieb, 2013) (see Chapter 5 for a more detailed discussion of SCF’s integrated system of care).
The Individualized Management for Patient-Centered Targets (IMPaCT) program is a community-based model founded on the notion that CHWs can improve outcomes by building relationships and providing person-centered support. CHWs provide personalized and holistic social support, advocacy, coaching, and health system navigation (Seervai, 2020), and the CHWs start by getting to know the person outside of their medical history and health complaints, initially addressing the social or behavioral needs that are obstacles to health care, such as loneliness or distrust of clinicians. The relationship, built on trust and understanding, is essential for this to happen, for it allows the CHWs to understand those in their care so that later in the relationship, they can guide them toward the health resources needed for whole-person care. IMPaCT has seen positive results across a wide variety of measures, including body mass index, hemoglobin and blood pressure levels, self-rated mental health, quality of care, total hospital days, and likelihood to complete a primary care follow-up appointment within 14 days of discharge from the hospital. The program yields a return on investment of $2.47 for every dollar invested by Medicaid and has been replicated across 20 states. Its success indicates that addressing socioeconomic and behavioral needs in a whole-person approach to care can improve access to and quality of primary care (Kangovi et al., 2014b, 2017).
5 Nuka is an Alaska Native word used for strong, giant structures and living things.
6 The Indian Self-Determination and Education Assistance Act, Public Law 93-638 (January 4, 1975).
HEALTH EQUITY AND THE ROLE OF PRIMARY CARE
Health equity is a guiding principle for many primary care teams. Primary care improves equity (Starfield, 2009, 2012; Starfield et al., 2005), and an ultimate goal for improving primary care is to reduce inequities as much as possible. Health disparities are the metrics used to measure progress toward achieving health equity (see Box 4-2). The United States has health disparities in terms of education, race, ethnicity, sex, sexual orientation, and place of residence (Adler et al., 2016). Greater equity is achieved by improving the health specifically of those who are economically or socially disadvantaged, and reductions in health disparities (both absolute and relative) are evidence of a move toward greater health equity. Achieving health equity means achieving social justice in health—no one is denied the possibility of a healthy life as a result of belonging to a population that has historically been disadvantaged (Braveman, 2014; Martinez-Bianchi et al., 2019). Health disparities and health care disparities are separate concepts and should not be confused. Ensuring equitable access to high-quality health care for all is not a guaranteed way to reduce health disparities and ensure health equity, given the many factors that have a much greater impact on health than health care does.
Improving Primary Care Models to Address Inequities
A 2016 review comparing the standard medical model of primary care to community-oriented primary care found that the latter did a much better job of addressing sociocultural issues that act as barriers to care and SDOH that lead to health inequities among immigrant populations (Batista et al., 2018). The study’s authors suggested that community-oriented primary care is better suited to address health equity in general.
A community-oriented approach to primary care is not the silver bullet to address inequities in health care—workforce solutions (Jackson and Gracia, 2014), digital health (Zhang et al., 2019), and policy measures (Holden et al., 2019) are also needed. However, it is an essential part of the solution. Over the past 40 years, practice-based research networks (PBRNs), each comprising at least 15 primary care clinicians or ambulatory practices that are linked closely with their communities, have been conducting research on how to improve primary care delivery, often with an explicit focus on health equity (Westfall et al., 2019). For example, the Southeast Regional Clinicians’ Network PBRN, based out of the Morehouse School of Medicine and comprising 203 federally qualified health centers (FQHCs) across eight southeastern states (MSM, 2021), has studied equity-addressing interventions for improving cancer screening (Hunt and Hurlbert, 2016) and treatment of asthma (Rust et al., 1999), heart disease (Daniels et al., 2012), and mental health issues (Rust et al., 2005) for high-disparity, underserved populations.
Consistent with the concept of whole-person, equitable health care and the person-centered, family-centered, and community-oriented approaches described in this chapter, the need to address SDOH is a key feature of the committee’s definition of high-quality primary care (see Chapter 2). In the past decade, consistent and compelling evidence concerning SDOH and their influence in shaping individual health have led the health care sector to reconsider its role in care. As discussed earlier in this chapter, a person’s health is a culmination of factors and is not limited to the absence of disease. SDOH represent some of these factors and are defined as the “conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life” (WHO, 2020a). What these determinants mean for each individual can be different, though; they can enhance wellness for some yet embody barriers and social risk patterns that contribute to increased morbidity and mortality for others (NASEM, 2019a). Addressing SDOH is an essential component of whole-person health and can eliminate some of the factors that contribute to health inequities.
According to Healthy People 2020, these determinants come in five key areas that span spheres of influence on an individual: economic stability
or socioeconomic status (SES), education, social and community context, health and health care, and neighborhood and built environment (ODPHP, 2020). Those with lower SES, and the resulting stress, shoulder a heavier burden of poor health than those with higher SES (Adler and Rehkopf, 2008; Bor et al., 2017). If SDOH inform social care and its integration into health care, clinicians can treat the upstream factors that so often become barriers to future health equity.
Integrating Social Care into the Delivery of Health Care to Improve the Nation’s Health (NASEM, 2019a) looked at the current state of U.S. social care and recommended changes to health care and policy infrastructure that promote alignment across sectors in order to better inform care delivery for all people. This report details five areas where health care systems can work with people and communities to encourage better social care for all (NASEM, 2019a): promoting awareness, adjustment, assistance, alignment, and advocacy. All of these actions will ultimately benefit individuals seeking care. Adjustment and assistance focus on improving care delivery specifically for individuals based on information about their social needs, while alignment and advocacy focus more delivery activities that the health care sector can carry out through coordinated care.
Advocacy activities promote health equity for people who may not have a voice in the current value-based care system and can range from light-touch (e.g., referring people to social workers to obtain rental assistance) to high-touch (e.g., longer, more intensive interventions that seek to address social needs) assistance. One example of a successful advocacy program is the Boston Medical Center Medical-Legal Partnership, which involved a coordinated team of lawyers and clinicians who worked together to change utility shutdown regulation with the Massachusetts Department of Public Utilities, to ensure that high-risk people did not have their heat shut off during the winter (National Center for Medical-Legal Partnership, 2017). Activities such as these ensure that social needs and determinants are taken into account and those with more barriers are not necessarily relegated to worse health outcomes.
The Role of Empanelment
Empanelment, sometimes known internationally as “rostering,” is the process of assigning all individuals in a given population to an interprofessional care team or team member that is then responsible for providing primary care. It is an approach that can help achieve equitable access to care for all and improved population health outcomes. Empanelment usually has delivery systems or care teams making the assignments, whereas attribution, covered further in Chapter 9, typically involves payers doing so (AIR, 2013). Approaches vary and can be based on geography, insurance,
or patient preference (Joint Learning Network for Universal Health Coverage et al., 2019). Panel size is frequently predetermined to ensure sufficient resources for the target population. More sophisticated processes may also acknowledge population health profiles to more evenly distribute health needs among primary care teams and help team members better understand the needs of their panels (PHCPI, 2019).
Empanelment ensures that each individual in a given population has a consistent and reliable source of primary care. It can be a strong foundation for trusting, continuous team member–patient relationships and provides community members with the access to appointments when they need them (Bodenheimer et al., 2014; Wagner et al., 2012). For these reasons, empanelment is an important component of community-oriented and PCMH primary care models, which emphasize ease of access to care and sustained clinician–patient relationships (Brownlee and Van Borkulo, 2013). Ideally, empanelment can help primary care meet access and convenience needs that frequently drive people to retail clinics and emergency departments (Coster et al., 2017). However, empanelment is not a one-time fix; it requires proactive maintenance to ensure consistent, timely access and resource capacity for all panel members (Joint Learning Network for Universal Health Coverage et al., 2019). See Chapter 6 for more on empanelment, panel size, and building primary care teams to meet the needs of a population.
SHIFTING PRIMARY CARE TO BE MORE COMMUNITY-ORIENTED
If one goal of person- and family-centered primary care is to move from a reactive to proactive approach, it is essential for teams to understand the health trends and demographic characteristics of the populations they serve (Hollander-Rodriguez and DeVoe, 2018). Multiple levers can help shift primary care toward community-oriented models, including data systems, workforce, care delivery settings, and partnerships between primary care, public health, and community-based organizations. All of these levers can be influenced by policy changes and innovative payment models (Bailey and Goodman-Bacon, 2015; Bitton et al., 2019; Cometto et al., 2018; Enard and Ganelin, 2013; Fertig et al., 2012; Gold et al., 2019; Hone et al., 2018; Krist et al., 2013; Ockene et al., 2007; SNOCAP-USA et al., 2014; Wiggins et al., 2013). The following sections discuss each lever in more detail.
Without data systems to understand the population being served, community-oriented primary care is not possible. Whereas the door-to-door data collection performed by the primary care leaders of the past century
posed issues of representativeness and accuracy, today’s data are often quite complete (Mullan and Epstein, 2002). Instead, care teams and their partners struggle with collecting and aggregating multiple data sources into a comprehensive, usable community-oriented system. Doing this will optimize tools such as patient registries, “community vital signs,” and geographic information systems to take the pulse of a community, orienting local care teams to health and social needs, issues of access, and the intervention strategies and collaborations needed to address them (AMA, 2016; Hughes et al., 2016; Phillips et al., 2019; Rock et al., 2019). See Chapter 7 for more information regarding data tools in primary care’s continued shift toward community-oriented care.
In most settings, the primary care physician workforce does not reflect the people it serves and is disproportionately male and white compared to the U.S. population (Xierali and Nivet, 2018). Physicians also increasingly come from privileged backgrounds. One study showed that more than half of all first-year medical students came from households in the top income quintile, whereas fewer than 5 percent were from the bottom income quintile (Youngclaus and Roskovensky, 2018). Individuals and families may perceive this discordance as a barrier to care (Malat et al., 2009; Saha et al., 1999) and prefer to see racial-concordant physicians (Alsan et al., 2019; Cooper et al., 2003; Saha and Beach, 2020; Saha et al., 2000). Increasing workforce diversity is believed to be essential in “(1) advancing cultural competency, (2) increasing access to high-quality health care services, (3) strengthening the medical research agenda, and (4) ensuring optimal management of the health care system” (Cohen et al., 2002, p. 91) and can contribute to a more equitable system for all. Chapter 6 explores the factors influencing the composition of the primary care workforce and strategies to increase its number and diversity.
One critical strategy for aligning the primary care workforce with its community is to expand opportunities to integrate CHWs and promotores de salud into primary care teams. CHWs are trusted community members who share a common background with the people they serve and have often experienced obstacles to health care or other forms of injustice themselves. They reflect the diversity of disadvantaged Americans: 65 percent are Black or Hispanic, 23 percent are white, 10 percent are American Indian or Alaska Native, and 2 percent are Asian or Pacific Islander (Arizona Prevention Research Center, 2015).
A large body of evidence suggests that CHWs can engage people with underlying socioeconomic issues into primary care (Wang et al., 2012), improve preventive screening rates (O’Brien et al., 2010), and reduce costly
hospitalizations (Campbell et al., 2015). The use of CHWs, however, should not deter the necessary efforts to diversify the overall primary care workforce across professions to create a local workforce that reflects the diversity of the community in which it is practicing. See Chapter 6 for more on the primary care workforce.
Primary care is often delivered in settings outside of the clinician’s office and more integrated into community settings. Innovative models of community-oriented primary care further integrate care delivery in non-clinical settings, including the workplace, college campuses and schools, recreation centers, places of worship, retail shops (e.g., barbershops), homeless shelters, housing for older adults, and institutions (e.g., prisons and jails). This shift to primary care in non-clinical settings increases access to care, allows for greater community participation, and relies on settings that are contextualized in other aspects of a person’s daily life.
The COVID-19 pandemic quickly illustrated that primary care can be delivered outside the traditional office visit. As the pandemic swept the nation and prompted a need to socially distance—for the safety of both clinicians and individuals—telehealth adoption in primary care increased by nearly 50 percent, with clinicians in both rural and urban settings seeing increases (Bosworth et al., 2020; Mann et al., 2020; Mehrotra et al., 2020). Even before, interest in use of telehealth services was increasing for both clinicians and individuals (AMA, 2020; Martinez et al., 2018; Orlando et al., 2019). Pandemic-related policy changes reduced barriers to telehealth access and promoted its use for primary and specialty care (Bashshur et al., 2020; CMS, 2020b). In addition, many professional medical societies endorse telehealth services and provide guidance for medical practice in this evolving landscape (AANP, 2019; CDC, 2020; Committee on Pediatric Workforce, 2015; Joint Task Force for the Development of Telepsychology Guidelines for Psychologists, 2013). See Chapter 7 for more about telehealth services.
A report from the U.S. Department of Health and Human Services (HHS) notes that even after Medicare in-person primary care visits resumed in May 2020, demand was steady for telehealth visits (Bosworth et al., 2020). A 2020 survey by McKinsey found that 48 percent of individuals who used telehealth during the pandemic were satisfied with the care they received, and 37 percent were likely to use telehealth in the future (Cordina et al., 2020). While in-person, patient–clinician interactions will remain necessary, and likely preferred by many people, the pandemic accelerated openness to telehealth in ways previously unseen from policy makers, clinicians, and individuals alike.
Where telehealth has been unable to meet people’s needs, including testing for and treating COVID-19 itself, primary care teams have partnered with health departments, academic institutions, local governments, and others to create opportunities for care. This includes developing drive-through testing sites and respiratory diagnostic centers that preserve personal protective equipment, especially important in federally designated shortage areas, and protecting both team members and individuals from potential spread (Barzin et al., 2020; Ton et al., 2020). The disruption and forced innovation brought about by COVID-19 could lead to purposeful changes in primary care delivery and enable better person-centered care if policy makers and payers make it a priority.
Partnerships Among Primary Care, Public Health, and Community-Based Organizations
Having primary care teams embedded within communities and partnering with public health and community-based organizations is not a new idea in the United States. In the late nineteenth century, dispensaries were established to provide medical care to the poor in neighborhood settings (Rosenberg, 1974). Although dispensaries were short-lived due to concerns about direct competition with private physicians (Burrow, 1977), their creation was prompted by a recognition that social conditions were influencing health and that health care services, informed by social medicine ideals, should be moved out of the hospital into the community (Janes, 1876; Rosen, 1947, 1949).
In the early twentieth century, many U.S. cities were proposing to organize and coordinate networks of health centers in each district that would serve defined geographic communities, adhere to the notion that a neighborhood should be identified and assessed, and recognize that unique health services should be targeted toward the special needs of each individual community (Davis, 1927; Hiscock, 1935; Pomeroy, 1929; Schmacke, 1998; Wilinsky, 1933). This period also featured a growing realization that community members should be involved in care delivery.
While district centers were created and called for services in the community, for the community, and by the community, most were limited to only offering public health and preventive services that complemented care already offered by private physicians, thus creating the chasm between modern day primary care and public health (Burrow, 1977; Winslow, 1919, 1929). One exception was the Indian Health Service (IHS), which implemented a more comprehensive model that combined primary care and public health in the late 1950s; it proved effective in promoting healthy behaviors, preventing disease (Nutting et al., 1979), and improving quality of care (Shorr and Nutting, 1977).
In 1966, the U.S. government produced Health Is a Community Affair (National Commission on Community Health Services, 1967). This 3-year study of healthy communities reviewed the evidence supporting the effectiveness of partnerships between primary care, public health, and communities and described the notion of “communities of solution” as an approach to health care defined by problems to be solved rather than geographic locales, specific delivery systems, or governmental agencies. A community of solution comprises people who come together to address an important problem or seize an opportunity to improve health, and it envisions primary care teams collaborating with many diverse partners, depending on the nature of the problems and the community. In addition to community members and public health professionals, each unique community of solution would include many other public and private partners and community-based organizations (Gotler et al., 2020; Griswold et al., 2013; The Folsom Group, 2012; Westfall, 2013).
Community participation in primary care was formalized as an important concept in the Alma-Ata Declaration of 1978.7 Community-oriented care was recognized by the Institute of Medicine in 1983 as an important aspect of high-quality primary care and further emphasized in Primary Care: America’s Health in a New Era (IOM, 1996). More recently, the ACA created new incentives for primary care to pursue community-based population health care. The October 2018 Global Conference on Primary Health Care in Astana, Kazakhstan, and resulting Astana Declaration reasserted this commitment to people-centered care and the role of community as well as both primary care and primary health care to achieving it (WHO and Ministry of Healthcare Republic of Kazakhstan, 2018; WHO and UNICEF, 2018).
Health centers provide high-quality, locally tailored, comprehensive primary care services and gynecologic, behavioral health, preventive health (including dental, cancer screening, family planning, and immunizations), vision and eye care, and diagnostic laboratory and radiologic services. They also offer case management services,8 referrals to specialty care and social
7 The Declaration of Alma-Ata was adopted at the International Conference on Primary Health Care in what was then known as Alma-Ata in the Soviet Socialist Republic (today, it is known as Almaty, Kazakhstan). The conference and declaration called for national and international action to strengthen primary health care throughout the world (International Conference on Primary Health Care, 1978). The Declaration is available at https://www.who.int/publications/almaata_declaration_en.pdf (accessed October 5, 2020).
8 In 42 CFR § 440.169 (2009), the Centers for Medicare & Medicaid Services (CMS) defines case management services as “services furnished to assist individuals … in gaining access to needed medical, social, educational, and other services” (which does not include “the direct delivery of underlying medical, educational, social, or other services”).
services, and transportation and translation services. The care delivered by health centers, which include FQHCs, health care for people who are homeless, health centers for residents of public housing, school-based health clinics, and migrant health centers, is based on tenets of community-oriented primary care and represents the largest segment of the primary care system.
Health centers are descendants of the original neighborhood health centers, which started in 1965 as two demonstration projects of the Office of Economic Opportunity Community Action Program to provide health and social services access points in poor and medically underserved communities and promote community empowerment (CHroniCles, 2020; Levitan, 1974). Congress passed an amendment to the original Economic Opportunity Act in 1966 to provide further funding for the planning of operation of more “comprehensive health service programs” (Anderson et al., 1976, p. 13). By 1972, more than 100 neighborhood health centers and other comprehensive health service projects had been initiated with grant assistance from the Office of Economic Opportunity (Zwick, 1972).
FQHCs are health centers that receive Health Resources and Services Administration (HRSA) Health Center Program federal grant funding to improve the health of underserved populations (HRSA, 2020a). Today, more than 1,400 FQHCs operate nearly 13,000 delivery sites. They serve nearly 30 million people, including more than 398,000 veterans, one-third of all people living in poverty, 20 percent of those living in rural locations, and more than 10 percent of all children (HRSA, 2020b). Delivery sites include tribal or urban American Indian and Alaska Native areas, remote sites connected to a community health center, and sites deemed “lookalikes” that meet the requirements of FQHCs but do not receive federal grant funding (Rural Health Information Hub, 2019).
Rural health clinics (RHCs) are Centers for Medicare & Medicaid Services (CMS)-certified clinics in rural Medically Underserved Areas or Health Professional Shortage Areas and provide primary care services. RHCs, like FQHCs, must meet Medicare and Medicaid health and safety standards in 42 CFR Part 491; however, RHCs are not subject to many of the other FQHC requirements and may be privately owned (CMS, 2019).
One key community-oriented feature of health centers is that all are required to have at least 51 percent of their governing boards of directors composed of people in the community who are served by the health center and reflect the demographic characteristic of its population (HRSA, 2020a; Taylor, 2004). This requirement ensures that the people served—who are often from under-represented communities that rarely are included in organization-level decision making—have a voice in how services are delivered. In practice, some evidence indicates that the demographics of patients on health center governing boards are not always representative of the patient population overall and that they seldom hold executive positions
on the board (Wright, 2013, 2015). Nevertheless, including patients in the system-wide decision-making process is a practical way to engage the community and ensure that its needs are addressed in the health centers’ daily operations.
Health centers are also required to complete a community needs assessment every 3 years, which includes a review of barriers (including transportation) and unmet health needs of the medically underserved (including the ratio of primary care physicians relative to the population, health indexes for the population served, the poverty level, and other demographic factors in demand for services, such as the percent of the population over age 65). In addition, they must make and maintain a reasonable effort to build and sustain relationships with other clinicians and services, such as hospitals and specialists, within their catchment areas to help facilitate seamless coordination with services that are not offered within the health centers themselves. They must also annually assess the geographic boundaries of their patient population (HRSA, 2018). In some communities, the community needs assessment is coordinated with those mandated for nonprofit hospitals and accredited public health departments with the goal of also coordinating their collective response to identified needs—an approach recommended by Primary Care and Public Health: Exploring Integration to Improve Population Health (IOM, 2012).
Health centers are financially accessible to the communities they serve. They are required to provide services to everyone, regardless of insurance status or ability to pay out of pocket. Uninsured individuals pay on a board-approved sliding scale based on income and family size. Revenue streams for health centers include Medicaid, Medicare, private insurance, and out-of-pocket payments. Medicare and Medicaid largely use a bundled, prospective payments system (PPS) that pays health centers per visit, not per service rendered. This allows for more flexibility and efficiency because health centers are not ordinarily covered by Medicaid FFS payments. However, the PPS rates have not kept up with inflation or the recent expansion of health center services in recent years and now only cover about 82 percent of the cost to care for Medicaid recipients (NACHC, 2020b). Similarly, while FQHCs provide services for 16 percent of Medicaid recipients, less than 2 percent of Medicaid payments go to them. Still, there is evidence that Medicaid beneficiary costs at FQHCs are lower than in other settings. A study of Medicaid beneficiaries comparing those who primarily receive primary care at FQHCs to those who seek care elsewhere found that costs were 24 percent lower for FQHC users. They also had fewer hospital admissions, fewer visits overall, and spent less on inpatient and specialty care (Nocon et al., 2016).
Evidence indicates that health centers have reduced access and outcome disparities across racial and ethnic groups, income, and insurance status
(NACHC, 2020a; Politzer et al., 2001). Their enabling services, such as transportation, nutrition assistance, health education, and housing, play a particularly important role in improving access. One recent nationally representative study found that among HRSA-funded health center clients, those who used enabling services had nearly twice as many visits and were more likely to get routine check-ups, receive preventive care and flu shots, and report higher patient satisfaction than those who did not (Yue et al., 2019). Health centers also outperform other delivery settings across a wide array of measures spanning quality and outcomes, patient satisfaction, and cost-effectiveness (NACHC, 2020a).
While the number of health centers has increased since the passage of the ACA, the expansion was largely in urban areas and less likely in areas that were rural or had more than 20 percent of the population below the federal poverty level (Chang et al., 2019). This suggests that improving access to health care for financially disadvantaged populations will require increasing the number of health centers to reach them; however, this is proving more difficult to achieve, as workforce shortages in primary care have contributed to a greater percentage of health centers reporting budgeted but unfilled positions for primary care physicians, registered nurses or licensed practical nurses, and licensed mental health clinicians (Lewis et al., 2019). One strategy health centers have employed to counter this is the Teaching Health Center Graduate Medical Education program, which places physician and dental trainees in health centers, mostly in primary care settings and rural or underserved areas (HRSA, 2021).
Health centers partner with the communities in which they operate in a variety of ways—from designing communication materials that community members want to working with local health departments to optimize and widen services offered and populations served (Mader et al., 2019; NACHC and NACCHO, 2010). Initiatives such as the Migrant Clinicians Network also work with health centers to help improve access and reduce disparities among vulnerable migrant populations (MCN, 2021). These models of partnership have improved health outcomes for millions of Americans and been shown to reduce access to care disparities for disadvantaged populations (HRSA, 2020b; Jones et al., 2013).
Indian Health Service
An agency within HHS, the IHS provides health care to approximately 2.6 million American Indian and Alaska Native people from more than 574 federally recognized tribes in 37 states (IHS, 2020a). Its primary care clinics include federal, tribal, and Urban Indian Health organizations that provide comprehensive care across the lifespan in rural areas, on reservations, and, increasingly, in urban population centers (IHS, 2020b). Many
IHS-affiliated clinics serve as safety net clinics to both IHS beneficiaries and non-beneficiaries within their communities, and some are also designated FQHCs (IHS, 2005, 2020c). The vast majority of IHS primary care is administered by tribes through self-determination contracts rather than by the federal government, with more than 60 percent of IHS appropriations administered by tribes (IHS, 2020b). Self-determination is at the heart of person-centered, family-centered, and community-oriented primary care. It enhances the mission of the IHS, which is to raise the physical, mental, social, and spiritual health of American Indian and Alaska Native people to the highest level. As recognized in the 2019 IHS strategic plan, ensuring the availability and accessibility of high-quality, culturally appropriate, primary, and preventive care services to all beneficiaries best supports accomplishing the IHS mission (IHS, 2019).
Despite many Tribal and Urban Indian Health Programs serving as “the glue that holds their communities together,” the IHS is chronically underfunded and provides health care services to less than half the eligible population (UCLA American Indian Studies Center, 2016; Urban Indian Health Commission, 2007, p. 7). This underfunding contributes to the persistent health disparities among the American Indian and Alaska Native population (Warne and Frizzell, 2014). A 2018 U.S. Government Accountability Office (GAO) report found that IHS, as an agency, spends approximately $4,000 per beneficiary, which represents less than 50 and 30 percent of the amount spent by the VA ($10,692) and Medicare ($13,185), respectively (GAO, 2018b). A separate GAO report found that in part as a result of its inability to match market-rate salaries, IHS struggles to fill vacancies for clinicians, which negatively affects patient access and quality of care (GAO, 2018a). Evidence also suggests IHS could be more systematic in assessing community needs (GAO, 2020). Despite these significant limitations and challenges, many Tribal and Urban Indian Health Programs have found ways to thrive and deliver comprehensive and holistic community-oriented health care to their communities to achieve the IHS mission. SCF’s Nuka System of Care represents the gold standard for tribal health organizations seeking to transform care for their own people and communities, as evidenced by its outcomes achievements and multiple quality awards (Gottlieb, 2013).
School-Based Health Center Partnerships
The nearly 2,600 school-based health centers (SBHCs) represent another example of effective partnerships between community organizations and primary care that have increased access (Love et al., 2019b). Some 6.3 million students nationwide have access to care at an SBHC from an interprofessional team of clinicians, including primary care and mental
health clinicians, in collaboration with the school community. SBHCs often function as a partnership between the school and the community’s health organization, such as a health center, hospital, or local health department. Specific SBHC services vary based on community needs and resources as determined through collaborations among the community, the school district, and local health care clinicians. Sixty-two percent of SBHCs have provided services to individuals other than the students in their schools, including faculty and school personnel, family members of student users, out-of-school youth, and others in the broader community. This enhanced access to care, including primary care, has reduced health care disparities for disadvantaged populations and improved oral health outcomes (Love et al., 2019b).
In recent years, SBHCs have begun using telehealth to further expand their reach into communities and enhance the effectiveness of their services. More than half the SBHCs offering telehealth serve rural communities, where access to care is often limited by clinician shortages and transportation issues, and approximately three-quarters are staffed by primary care clinicians only, with the remainder staffed by primary care and mental health care clinicians (Love et al., 2019a).
Nurse-Managed Health Centers
Nurse-managed health centers (NMHCs) deliver whole-person primary care and are led and primarily staffed by advanced practice registered nurses (APRNs). The estimated 250 NMHCs in the United States serve more than 1.5 million medically underserved people, typically in low-income urban and rural areas (Esperat et al., 2012; IOM, 2011). Most NMHCs are affiliated with university-based nursing schools or independent nonprofits, but some are affiliated with FQHCs, SBHCs, or other health centers.
Though NMHCs resemble community health centers in the populations and areas they serve, they are generally ineligible for FQHC status and federal funding due to a governance structure that includes the boards of their founding institutions, rather than the center’s patients (Hansen-Turton et al., 2010). To enable federal support, section 5208 of the ACA established a federal program to fund NMHCs, earmarking $50 million to be distributed that year via one-time grants and noting that “such sums as may be necessary for each of the fiscal years 2011 through 2014.”9 Through HRSA, nearly $15 million in grants was awarded to 10 NMHCs, which provided care to more than 94,000 patients and trained more than 900 APRNs (Cooper, n.d.; Hansen-Turton, 2012). However, in an effort to
9 Patient Protection and Affordable Care Act, Public Law 111-148, § 5208 (March 23, 2010).
decrease overall spending, federal funding stopped there and the program was not renewed (Carthon et al., 2015).
Settings of Care for Older Adults
Older adults may need to receive primary care in a variety of settings outside of a traditional primary care practice. Residents of nursing homes often have complex care needs and include individuals who need post-acute care (after a hospital stay) and those who are long-term stay residents. Care of the nursing home resident includes assessment and management of both acute and chronic physical and psychosocial health care needs, coordination of needed health care services, the management of transitions between different health care settings, and advance care planning, among other services (Unwin et al., 2010). Increasingly, medical care in nursing homes is provided by nurse practitioners (NPs) and physician assistants (Teno et al., 2017).
Some older adults are home bound and thus rely on home-based care. The Independence at Home model provides comprehensive primary care services to Medicare beneficiaries with severe chronic illness and disability within their own homes (CMS, 2020a). The VA also has a home-based primary care program that serves veterans in their homes (VA, 2020).
Across settings, the Geriatric Resources for Assessment and Care of Elders (GRACE) model focuses on primary care for low-income older adults (Counsell et al., 2006). An NP paired with a social worker—the support team—leads the GRACE model, and the two professionals work together with an interdisciplinary team (including a geriatrician, pharmacist, physical therapist, mental health social worker, and community services liaison) to develop a care plan. The support team then works directly with the primary care physician to implement the plan. The model includes in-home visits by the support team, and plays a particularly important role in continuity of care during care transitions (Bielaszka-DuVernay, 2011). The GRACE model has been associated with satisfaction among primary care physicians (Counsell et al., 2009) and improved quality of care and quality of life (Counsell et al., 2006). For high-risk patients, the model has been associated with reduced hospitalization rates (Counsell et al., 2007).
Each of the previous levers requires supportive policies and payment arrangements. FFS payment covers the vast majority of primary care payment in the United States today and is a major challenge for primary care practices when partnering with communities, including the use of community members like CHWs and promotores de salud. Currently, CHWs are paid
through a patchwork of funding options, such as Medicaid demonstration waivers, health homes, Medicaid managed care plans, and grants (Lloyd et al., 2020). This gap would be addressed by a comprehensive payment model that supports the organization and delivery of primary care services that fits community needs, as outlined in Chapter 9. For example, if certain communities want to expand their CHW workforce and integrate CHWs into their primary care teams, this comprehensive payment would allow for flexible allocation of resources and not depend on billing for each individual service provided by only certain members of the care team (e.g., physician, NP) under certain conditions (e.g., billable in-person visit code). In addition, incremental financing options could more adequately fund CHWs and other primary care–community partnerships. One example is a policy initiative currently under consideration that would support creating an optional Medicaid benefit to fund CHWs and be linked to evidence-informed standards for hiring, training, and deploying them (Biden, 2020).
FINDINGS AND CONCLUSIONS
Moving from patient-centered care to a person-centered, family-centered, and community-oriented approach represents an evolution of primary care to focus on individual people in the context of their lived experiences, their family, their social worlds, and their community. The relationship between the person seeking care (and their family) and the interprofessional team is an essential component of this shift. Building and maintaining this relationship in what is currently a disease-focused system, and achieving personalized, prioritized, and coordinated care for all people and families in communities, will require a system that supports developing and sustaining strong individual and community relationships in primary care to build a foundation for dismantling the pervasive systemic inequities in health care. Supporting and expanding delivery models, particularly those for the underserved (such as health centers), and empaneling populations will help ensure that all Americans have a usual source of primary care. Creating opportunities for individuals, families, and communities to participate in the organizational decision making at health care organizations and that related to the care itself will help the nation to reduce health disparities, particularly in underserved populations, and support achieving health equity for all populations.
Instead of responding to whole-health needs using a community-oriented approach, clinicians and health care organizations are rewarded for preventing, diagnosing, and treating diseases and performing procedures, prescribing medications, and providing care based on traditional biomedical models. Multiple levers can help shift primary care toward community-oriented models, including data systems, interprofessional care teams, care
delivery settings, and partnerships between primary care, public health, and community-based organizations. All of these levers can be influenced by policy changes and innovative payment models.
As the United States grapples with the effects of the COVID-19 pandemic, levels of unemployment not seen since the Great Depression, and a reckoning of its long-standing history of racism and injustice, primary care will have to transform to meet current demands. This is an opportunity to radically reimagine it so that it is built around the people it serves, their families, and their communities, paid in ways that support this approach, and grounded in relationship-centered care, equity, and social justice. Until the barriers to innovation and sustainability are removed, it will be challenging to achieve high-quality, high-value primary care for all communities. Without success in expanding and supporting primary care’s ability to address the needs of not only individuals but families and communities, the nation will be challenged to meet the health care needs of all communities, particularly underserved populations.
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