How Community Engagement Can Support Whole-Person Primary Care

Purpose

This brief presents four case studies illustrating how primary care practices can effectively engage with their communities to support whole-person care. Each case study highlights the need identified in the practice or community and the community-based intervention conducted in response, as well as the funding sources, results, and key takeaways. The case studies offer diverse approaches and strategies that primary care teams can use to engage with their communities to address health-related social needs (HRSN) and improve health outcomes. The four case studies include:

  • The CUNA Program, Cherokee Health Systems and Centro Hispano de East Tennessee
  • Vietnamese Family Autism Advisory Board, HopeCentral Clinic
  • Supporting Families Growing Together Initiative, MaineHealth System
  • Opioid Centers of Excellence Model, Pennsylvania Department of Human Services

Definitions

Whole-person care (also referred to as whole health care) is a team-based, person-centered approach that considers the behavioral, environmental, social, and other factors that influence health outcomes and move people toward chronic disease.1,2 This approach is anchored in trusted, longitudinal relationships. It involves tailoring and delivering care to align with the needs, goals, and cultural and linguistic preferences of people, families, and communities.3 No one primary care clinician or practice has the capacity to perform all the functions required to achieve whole-person care.4 Whole-person care requires integrated, collaborative, interdisciplinary care teams to share responsibilities and coordinate patient care.5

Community engagement is "the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the wellbeing of those people".6 Community engagement requires ongoing collaboration with community members and organizations to address their health needs and health-related social needs. For primary care practices, this involves proactively building trusting relationships with local providers, agencies, and organizations to facilitate access to healthcare, health education, health data, and social services and supports.7

Despite increases in healthcare spending, health outcomes in the U.S. have been worsening.8 Chronic conditions continue to be the leading causes of death and disability, and the number of individuals who have multiple chronic conditions continues to rise.9 An estimated 42 percent of people in the U.S. report having 2 or more chronic conditions, and an estimated 1.2 percent of adults report having a co-occurring mental illness, substance use disorder, and chronic disease.10,11

Historically, primary care has focused on health promotion, disease prevention, and disease treatment and management to improve health outcomes. However, research shows that healthcare and health behaviors account for only 50 percent of health outcomes (see Figure 1 below).12,13 Socioeconomic factors and the physical environment account the other 50 percent of health outcomes, and yet these factors typically fall outside the scope of traditional primary care.14,15

Figure 1. Factors Influencing Health Outcomes for Individuals and Communities
Image citation: County Health Rankings and Roadmaps. County Health Rankings' Model of Health. https://www.countyhealthrankings.org/what-impacts-health/county-health-rankings-model. Accessed September 3, 2024. [adapted]

When socioeconomic factors and the physical environment put individuals at risk for worsening health outcomes and increased healthcare use, they are referred to as health-related social needs (HRSN). The more health-related social needs (HRSN) a person has, the more likely they are to:16

  • Experience poor physical and mental health,
  • Develop chronic conditions, and
  • Engage in unhealthy behaviors.

Addressing unmet HRSN is a core component of whole-person care.17 By shifting to interdisciplinary team-based care and proactively screening for these needs, primary care teams can decrease clinician burnout and stress, improve care quality, reduce the effects of chronic diseases, and ultimately foster significant and sustainable improvements in health outcomes and population health.18,19,20,21,22

Research on the impact of whole-person care is promising but limited. Table 1 (below) outlines the health outcomes data for whole-person care models being implemented in primary care practices in the U.S. These models were selected from a larger, globally inclusive sample identified by the National Academies of Sciences, Engineering, and Medicine's Committee on Transforming Health Care to Create Whole Health.

Though these models are tailored to align with the resources, priorities, and needs of the specific patients and communities being served, at the core of each one is person-centered, team-based care that identifies HRSN and coordinates with behavioral health, mental health, public health, specialty care, social services, and other community supports.23 Common outcomes across the models featured in Table 1 include:

  • Improved patient-reported outcomes
  • Improved clinical quality metrics
  • Increased access to care
  • Improved healthcare utilization
Table 1. Health Outcomes Data for Whole-Person Care Models in Primary Care Settings in the U.S.

Model

Study

Population

Setting

Statistically Significant Health Outcomes Data

Advanced Care for Elderly (ACE) Programs

Counsell et al., 200724
(Randomized control trial)

Seniors receiving home-based care

6 community health centers in Indiana

Compared to seniors who received usual care, those with interdisciplinary team-based care had improved:

  • General health (-2.3 vs. 0.2)
  • Vitality (-2.6 vs. 2.6)
  • Social functioning (-2.3 vs. 3.0)
  • Mental health (-0.3 vs. 3.6)

Compared to seniors who received usual care, those with interdisciplinary team-based care had a lower:

  • 2-year ED visit rate per 1,000 (1,748 vs. 1,445)

Department of Veterans Affairs Whole Health System (WHS)

Bokhour et al., 202225
(Retrospective observational cohort study)

Veterans with co-occurring opioid misuse and chronic pain

18 medical center flagship sites

Compared to veterans in conventional care, WHS veterans had greater:

  • Decreases in opioid use in 18 months (11% vs. 23%)

Compared to veterans in conventional care, WHS veterans had slight improvements in:

  • Perceptions of care
  • Engagement in healthcare
  • Self-care
  • Life meaning and purpose
  • Pain
  • Perceived stress

Mary's Center's Social Change Model

Sinaii, 201826
(Quantitative analysis)

Immigrants, women, low-income, uninsured, or underinsured

Federally qualified health center serving Washington, D.C.

Compared to participants who only used primary care services, those who used primary care and nonmedical services had lower risk of:

  • Hypertension
  • Obesity
  • Diabetes
  • High cholesterol

Southcentral Foundation's Nuka System of Care (SOC)

Blash et al., 201127
(Observational cohort study)

Alaska Natives and American Indians

Primary care health system in Anchorage, Alaska

Compared with the prior system of traditional government-managed tribal health, the Nuka SOC:

  • Increased people with a primary care provider (from 35% to 95%)
  • Improved access (from a 4-week wait to same-day access)
  • Reduced people on behavioral health waitlist (from 1,300 people to 0 people)
  • Increased annual HBA1C screening (from 78% to 93%)
  • Increased the colorectal screening rate for those over 50 (from 49% to 59%)
  • Reduced emergency room use (by 42%)
  • Reduced hospital days (by 36%)
  • Reduced specialist use (by 58%)

Vermont Blueprint for Health: Vermont's Community-Oriented All-Payer Medical Home Model

Jones et al., 201628
(Sequential cross-sectional analysis study)

Vermont residents

Patient-centered medical homes in Vermont

Compared to residents at non-participating practices, residents in participating practices had higher rates of:

  • Adolescent well-care visits
  • Breast cancer screening
  • Cervical cancer screening
  • Appropriate testing for pharyngitis

Compared to residents at non-participating practices, residents in participating practices reduced:

  • Inpatient expenditures (-$217.8)
  • Outpatient expenditures (-$154.1)
  • Inpatient discharges (by 8.8 per 1,000 members)
  • Inpatient days (by 49.6 per 1,000 members)

Community engagement plays a vital role in enhancing whole-person care because whole person care is grounded in the relationships among care teams, practices, and health systems and the people, families, and communities they serve.29 Engaging with community members and organizations can help primary care teams deepen their understanding of social norms and cultural and linguistic preferences and more effectively foster the trusting and longitudinal relationships needed to achieve whole person care.30

Community engagement also helps to improve access to care by creating a coordinated network of resources and support that ensures that there is "no wrong door" for people, families, and communities to receive care they need.31 While primary care teams may not be able to address all unmet HRSN directly, they can play a pivotal role in identifying these needs, tailoring care delivery as needed, and facilitating connections with the community organizations, local agencies, and specialty providers who can address those needs.32

Figure 2. Approaches to Community Engagement in Primary Care

In the context of primary care, community engagement can flow in two distinct yet mutually beneficial directions, as illustrated in Figure 2 (above):

  • Internal Focus: A primary care practice conducts outreach to community programs to determine what needs exist in the community and develops programs or adapts practice workflows/policies to better address those needs. For example, a practice may develop a smoking cessation program or change its policies to allow walk-in appointments for the medications to treat opioid use disorders, depending on the needs of the community.
  • External Focus: A primary care practice identifies a specific need in their patient population, does research to identify community programs to address that need, and conducts outreach to establish strong referral relationships for their patients. For example, a practice may identify a high rate of food insecurity among their patients and then identify and partner with local food banks to provide food assistance referrals.

These community engagement pathways are distinct but mutually promoting. The more a primary care practice conducts outreach with the programs within the community, the more the community learns about what the primary care practice has to offer. Likewise, the more the primary care practice learns about what the community can offer, the more that practice is able to refer patients to community services or incorporate those services into their interventions. Ultimately, both pathways lead to increased levels of community engagement when supported by proactive and ongoing collaboration and two-way communication.33

What follows are four case studies that provide examples of diverse approaches primary care teams can use to engage with their communities to address health-related social needs (HRSN) and improve health outcomes. The four case studies include:

  • The CUNA Program, Cherokee Health Systems and Centro Hispano de East Tennessee
  • Vietnamese Family Autism Advisory Board, HopeCentral Clinic
  • Supporting Families Growing Together Initiative, MaineHealth System
  • Opioid Centers of Excellence Model, Pennsylvania Department of Human Services

Fast Facts

  • Program Name: The CUNA Program
  • Implementing Agency: Cherokee Health Systems and Centro Hispano de East Tennessee
  • Location: Knox County, Tennessee
  • Population Served: Latina pregnant women
  • Community Linkages: Language-concordant medical providers
  • Contact: Eboni Winford, PhD (eboni.winford@cherokeehealth.com)

"Cuna is the word for crib in Spanish, and the program [works] to address maternal health disparities in the Latina population by providing expecting mothers with more prenatal and postpartum support and education, plus an emotional wellbeing component."34

Background

Early access to prenatal care is essential for ensuring maternal and neonatal health, as it allows for early assessment and intervention. Women who receive late or infrequent prenatal care are at risk for several complications that pose a risk to both mother and baby.35 Although the rates of maternal mortality for Latina women have historically been lower than other racial and ethnic groups, they have been rising.36,37 Disparities in this group's maternal health outcomes result from experiences of discrimination and mistreatment, medical mistrust, rates of engagement in prenatal care, mental health challenges, and language barriers.38

In Knox County, the third most populous county in Tennessee, 6 percent of the population is Latino. Indicator data from the HRSA Maternal and Infant Health Mapping Tool in 2021 reported that 81 percent of pregnant women entered prenatal care in their first trimester in Knox County, TN. However, staff at Cherokee Health Systems (CHS), a large provider of primary and behavioral healthcare across Tennessee, noticed this rate was only 63 percent for Latina women, with 13 percent not engaging in prenatal care until the third semester. Many of CHS's patients prefer to receive prenatal services in Spanish; however, only one provider at CHS provides this care without the use of an interpreter. CHS staff suspected this was a contributor to the disparity in early prenatal care, as language concordance has been linked to improved care engagement and health outcomes.

Intervention

To address this, CHS launched The CUNA program, which is a partnership between CHS and Centro Hispano de East Tennessee (Centro), the leading provider of resources for East Tennessee's Latino community and for East Tennessee regarding the Latino community. The goals of the CUNA program are to:

  • Deliver a language-concordant peri- and postpartum group medical visit-based intervention to reduce birthing disparities.
  • Eliminate social injustices and barriers that contribute to these negative health outcomes.

While pregnant Latina women who live in Knox County have been the primary recipients of intervention services, the families of pregnant women also stand to benefit. Services include:

  • Education about the birthing process
  • Behavioral health guidance
  • Advocacy during the medical process

More specifically, patients participate in weekly group medical visits with the same cohort for 10 weekly group visits. During these visits, patients engage in 2 hours of educational programing, in Spanish, covering a variety of topics (e.g., feeding, caring for baby, anatomy and physiology of labor, etc.) to help reduce health literacy gaps. During the educational portion of the group visits, patients are pulled out briefly for medical treatment (including behavioral health and case management, as needed), in their preferred language, and then return to the educational session.

Funding

The program was funded through a grant from the Health Resources and Services Administration (HRSA). CHS and Centro partnered on the grant writing process.

Results

CHS is currently in the process of collecting data regarding health outcomes. They are collecting weekly feedback from patients participating in the program to better improve literacy and healthcare experiences. They continue to monitor and modify workflows within CHS to reduce the time and effort of providers each week, to make for a smoother program, and pave the way for long-term implementation.

Key Takeaways

The CUNA project shows how existing community organizations can be an invaluable resource for understanding patients and addressing disparities. These organizations present an opportunity to collaborate and share resources to reach more people in a more person-centered manner. Specifically, project staff have learned:

  • Communicating Expectations: Open communication with community partners and establishing roles/expectations helps set a strong framework for partnership.
  • Listening to the Community: Regular and ongoing patient and community feedback is essential for ensuring high-quality and equitable healthcare services.

Approach to Community Engagement

Cherokee Health Systems establishment of the CUNA program is an excellent example of an externally focused approach to community engagement (Figure 2). System staff identified a need in their patient population and established a partnership with a well-respected community organization that had an aligned mission and the necessary expertise to address that need. This partnership led to culturally and linguistically appropriate prenatal and postpartum support being provided to this population. It can be expected that as the relationship between CHS and Centro strengthens over time, Centro will be a source for referrals back to CHS. By partnering, both organizations can serve more people and in more targeted and holistic ways.

Fast Fact

  • Name: Vietnamese Family Autism Advisory Board
  • Implementing Agency: HopeCentral Clinic
  • Location: Seattle, Washington
  • Population Served: Vietnamese families with children who have autism spectrum disorder/developmental delay
  • Community Linkages: Referrals to pediatrics, behavioral health, child development support services, and parenting support
  • Contact: Thanh Kirkpatrick, MD (tkirkpatrick@hopecentralhealth.org)
  • Website: https://www.hopecentralhealth.org/

"The Vietnamese Family Autism Advisory Board (VFAAB) is a coalition of families, passionate community members, and medical support service providers that seeks to be a resource to families, assisting people with navigating the care system to connect to support services and educating the community about autism and developmental delay."39

Background

Autism Spectrum Disorder (ASD) occurs in approximately 1 in 36 children in the United States, according to the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network.40 Early diagnosis is important, as it allows for timely intervention that can significantly improve developmental outcomes and quality of life.41 There are five main barriers that prevent early diagnosis: lack of awareness, social stigma, dismissal of parent concerns by healthcare providers, access to ASD services, and barriers to ASD screening.42 Language is a common barrier to ASD screening, as most autism screening tools were developed in Western, predominantly White populations. These tools have questionable appropriateness in culturally and linguistically diverse contexts.43

In 2016, providers at the HopeCentral Clinic began having concerns when administering routine developmental screenings of their patients. The clinic, located in Seattle, Washington, serves a community with a large Vietnamese population. During screening, providers began to question whether they were getting fully accurate answers to questions from parents. Despite their children displaying signs of a developmental disorder, such as delayed speech, problems with social interactions, or behavioral problems, the responses to screening questions were not matching observed behavior. Providers also noticed that parents did not talk about these issues, seek further evaluation, or follow up as recommended. Additionally, local developmental delay resources from a large nearby tertiary pediatric care center were not reaching this group.

Intervention

Providers started to investigate solutions, meeting with local stakeholders to understand the needs of the Vietnamese community on screening for developmental delays. They polled Vietnamese community leaders and conducted focus groups with those leaders, Vietnamese families, and the Seattle Children's Hospital autism clinic. This allowed them to understand the patterns of Vietnamese immigration to the area, as well as the cultural context for discussing mental health and the barriers to treatment. Barriers existed both within the medical community, where providers would use culturally inappropriate screening tools and/or dismiss parental concerns, and outside of the clinic, where stigma would prevent community support.

This led to the formation of the Vietnamese Family Autism Advisory Board (VFAAB) in 2017. The VFAAB is a coalition of families, community members, and medical and service providers formed to support families of children with developmental delays in the Vietnamese community. The board was formed with the following goals:

  • To create an inclusive community of support for Vietnamese families with children who have autism spectrum disorder/developmental delay (ASD/DD) and the people who care for them.
  • To raise awareness and decrease the stigma of ASD in the Vietnamese community.
  • To equip medical and therapeutic providers with the tools necessary to better care for Vietnamese families with ASD.
  • To increase access to child development support services that are family-centered.

To achieve these goals, a series of interventions were launched that remain ongoing. They include:

  • Holding monthly meetings to promote community connection between parents/children and medical and allied health service providers. These meetings provide a space for parents to share their life experiences and challenges.
  • Writing articles and creating videos in Vietnamese to help the community learn more about autism and developmental delay, the struggles families face, how to recognize developmental delay, and where to go if a parent is concerned their child might be affected.
  • Providing education on early parenting approaches for children with developmental delays through in-person training with experts. This training provides strategies to parents and other caregivers on how to create supportive home environments and manage difficult behaviors.
  • Improving the referral process and experience for Vietnamese children with suspected delays to get needed evaluation and services.

Funding

Establishment of the VFAAB was achieved through grant funding. Providers at the HopeCentral Clinic applied for various grants from organizations across the state and country. A donation system was introduced in 2023 to offer additional support for the program. However, this accounts for less than one percent of total funding. There is no clear path for financial sustainability outside of grants and new grants are being identified and applied for regularly. Existing as a predominantly grant-funded operation can be challenging, as each new grant can come with its own requirements and objectives, which can gradually shift the focus of the program away from its original goals.

Results

While metrics on patient outcomes are difficult to measure in this program, more families are speaking out, asking for help, and connecting to services as the program grows. Attitudes in the community are changing in noticeable ways, as more people in the community talk about developmental delays and support each other. Feedback from patients has been very positive and parents have appreciated being a member of a supportive community. Providers and staff have been excited and motivated by the program's mission and the impact they see for the families they serve.

Providers building relationships with families in the community has been crucial for establishing trust, and community partners have been essential for growing this program. It is through these efforts that the Seattle area is recognized as a place where Vietnamese families can access care and support in a culturally sensitive way.

Key Takeaways

The VFAAB project shows how primary care can play a crucial role in identifying community needs and developing solutions. Operationally, providers learned:

  • Community Support: Offering community support groups outside of the clinical setting will help reach a larger segment of the community and show more families that the interventions you are promoting can help. Word-of-mouth from trusted community members is essential to growth and buy-in.
  • Importance of Small Wins: It is important to celebrate the small accomplishments in your community program. For example, VFAAB recently hosted a successful Little Smiles child development class. This small-group class was held for parents to learn about child development, screening, and referral services, as part of a playgroup session. The children were able to enjoy the group playtime while their parents had an opportunity to learn. The post-class feedback surveys were overwhelmingly positive.
  • Cultural Accessibility: While autism touches all aspects of allied health services, it is difficult to translate American medicine to people from different cultural backgrounds. Language barriers and stigma are challenging. Accessing care in the system is difficult and often delayed, resulting in worse patient outcomes. Thus, it is important to make screening and treatment as culturally accessible to the target population as possible.
  • Knowing the Community: It is necessary to understand the unique and hyperlocal characteristics of the served population to ensure interventions reflect the needs of the community. For example, the Vietnamese community in Seattle is different than the Vietnamese community in Vietnam. Adapting interventions to the specific nuances of a community's population is necessary for a successful intervention.

Approach to Community Engagement

The HopeCentral Clinic's establishment of the Vietnamese Family Autism Advisory Board (VFAAB) is an excellent example of an internally focused approach to community engagement (Figure 2). Clinic providers suspected an unmet need in the community, met with community stakeholders to understand that need, and then developed an intervention to address it. The VFAAB serves as an important awareness-building vehicle for informing community members that culturally and linguistically accessible screening and treatment for ASD/DD in children is available and connecting them to those services. As HopeCentral Clinic continues to work with the community through the VFAAB, they learn about other helpful, culturally sensitive offerings available at other organizations and can refer their patients to those services. This dynamic leads to a strong relationship between the HopeCentral Clinic and the community it serves, through which both can benefit.

Fast Facts

"This innovative MaineHealth program seeks to prevent and mitigate Adverse Childhood Experiences for pediatric patients ages 0 to 3, by offering a set of resilience-building supports for their entire families. Foundation funding has allowed the program to embed Early Childhood Support Specialists (ECSS) who have now worked with hundreds of families at pediatric clinics in Portland and Rockland."44

Background

Pediatric adversity and social drivers of health significantly impact long-term health and development.45,46 The most important age for brain development is the first few years of life, as more than 1 million new brain connections are being formed every second.47 The impact of experiences such as violence, neglect, parental substance abuse, food insecurity, homelessness and barriers to healthcare are magnified during this formative period of human development.48,49 However, standard pediatric care is not designed to support families facing significant adversity or barriers to health with the necessary resources.50

Starting in 2018, MaineHealth Primary Care initiated trauma and food insecurity screening, in tandem with developmental screening, across all practices serving children. It soon became apparent that practices with higher levels of Medicaid or uninsured patients required significantly more support to adequately address developmental delays, parenting stressors, and social barriers to health. Disparities in food insecurity ranged from a low of 1 percent in a suburban practice to greater than 20 percent in an urban practice. Additionally, chart review data from a rural practice indicated less than 30 percent of patients referred to early intervention developmental services were successfully connecting with those services.

Intervention

In 2021, a multidisciplinary team from across the MaineHealth System piloted integrating an early childhood support specialist (ECSS) into the care team to provide additional support to high-risk children and families. This new model was piloted in two MaineHealth practices — Pen Bay Pediatrics in Rockport and the Maine Medical Partners Pediatric Clinic in Portland, Maine. This initiative became the Supporting Families Growing Together program, which promotes the healthy development of children by building the resilience of their families. The ECSS is available to all children 0-3 years of age at the two pediatric practices with no limitations in insurance status or ability to pay. The ECSS primarily serves:

  • Patients with developmental delay
  • Parents who would benefit from educational support for child development
  • Families with significant barriers impacting their access to stable housing, food, basic necessities, and medical care
  • Families with significant risk factors for adversity, including but not limited to:
    • Parental mental illness or substance use disorder
    • Child's ACEs score >3
    • Child abuse or neglect
    • DHHS involvement/foster care
    • Current or recent intimate partner violence

An ECSS builds relationships with families at a time when infants and toddlers are rapidly developing, learning, and benefiting from family and community connections. In the practice setting, they assess a family's strengths and needs and connect families to resources, provide referrals, and coach families on children's social and emotional development. The ECSS also assists with removing barriers to attending medical visits by providing reminder communications and supporting transportation when needed. In the community, the ECSS meets families at service sites to help with applications for federal and state programs or to assist with applying for childcare. They also frequently meet the parents and baby at their home or shelter to promote developmental parenting and environmental safety.

Funding

From 2021-2024, the John T. Gorman Foundation supported the initiative at MaineHealth, providing funding for one full-time ECSS at each practice. The Foundation also supported a flexible funding account to help with just-in-time needs, such as transportation, gas cards, food cards, cooking supplies, car seats, diapers, and formula.

MaineHealth has recently secured three additional years of funding from the John T. Gorman Foundation. Lessons learned from the pilot program were applied to enhance the program in its next iteration. The following additions to the Supporting Families Growing Together program are now being initiated:

  • Increase the age group from 0-3 to 0-5 years to support gaps in public educational programs for 3- to 5-year-olds.
  • Increase from one ECSS to two ECSSs at the Portland site to better match demand for services.
  • Create collaboration between OBGYN Sites and WIC teams at both Pen Bay and Portland sites.
  • Increase focus on connection to early childcare/pre-school and to Child Developmental Services.
  • Design the electronic medical record notes and reports to track parental goals, interventions provided, and outcomes over time.

Results

Over 3,000 newborns and children have access to this program, with the ECSS interacting with just over 20 percent of these patients. During the initial 3-year grant cycle, approximately 500 families were supported across the two pediatric practices. At the Pen Bay site, the connection rate for children referred to early intervention services increased from an average of 30 percent to 80 percent.

The most common needs documented in the electronic medical record were parenting support, connection to resources, and access to basic necessities. For example, 62 percent of families served at the Portland site requested support with items such as cribs, car seats, clothing, and diapers. The most common programs the ECSS assisted families with accessing were the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC), the Supplemental Nutrition Assistance Program (SNAP), and child developmental services.

Patient Feedback

Parental interviews were completed to determine the impact of the ECSS role. The most common theme was increased trust in the medical system; parents reported increased trust with the pediatric office, communication with the care team, and confidence in the care provided at both clinic locations. Parents also reported decreased nervousness, stress, and worry with pediatric appointments. Many families discussed how helpful and motivating it was to watch the ECSS interact with their children.

Provider Feedback

Anonymous electronic surveys were distributed to providers to gather their feedback on the ECSS role (28 out of 55 providers completed the survey). The percentages below reflect the number of providers who agreed or strongly agreed to each statement.

  • It was easy to connect families to the ECSS service: 100 percent
  • The ECSS increased my knowledge of available resources: 96 percent
  • The ECSS increases my confidence that children with developmental concerns will be connected to services: 96 percent
  • Having an ECSS in my office helps me feel less burned out from my work: 100 percent
  • I would recommend the ECSS model to my colleagues in other primary care practices: 100 percent

The results of the pilot program are currently being utilized to help inform pediatric case management proposals for the overall MaineHealth system. The next phase of the project has an emphasis on assessing the impact of the ECSS interactions on patient/family outcomes. The team has developed a longitudinal data analysis framework that will track outcomes at a patient and family level over time.

Key Takeaways

The findings from the initial evaluation show the intense and wide-ranging adversity and barriers faced by many families with young children.

  • Improve Patient Relationships: Having an ECSS integrated into pediatric primary care improves parent-child relationships, strengthens parent connections to community resources, and fosters comfort and understanding between families and healthcare providers.
  • Provide Care Team Support: Adding a staff member to reduce the workload of other providers helps the whole system. The support offered by the ECSS improved efficiency and effectiveness of patient care, reducing provider burnout.
  • Build Community Connections: It is vital for a health system to create strong community connections, meet immediate family needs, and build trust with families. Having flexibility in the ECSS role to serve patients within the community facilitates this relationship building.

Approach to Community Engagement

The MaineHealth Supporting Families Growing Together intervention is an excellent example of a primarily externally focused approach to community engagement (Figure 2). Social and developmental needs were identified in the patient population of the two pediatric clinics. In response, an ECSS was integrated into each to systematically connect patients to available services in the community to address those needs. The ECSSs were able to develop strong relationships with the leadership at these organizations, improving their ability to connect patients to the necessary services over time. As these relationships form, the community organizations learn about MaineHealth's offerings and direct clients in need of medical care to their clinics. The relationship becomes strong and mutually promoting, which benefits everyone.

Fast Facts

  • Program Name: Pennsylvania Opioid Use Disorder Centers of Excellence (OUD-COE)
  • Implementing Agency: The Wright Center
  • Location: Luzerne, Lackawanna, Wyoming, and Wayne Counties, Pennsylvania
  • Population Served: People with opioid use disorder, including pregnant and postpartum women
  • Community Linkages: Substance use services, patient and family support, community/social support services
  • Contact: Scott Constantini (constantinis@thewrightcenter.org)
  • Website: www.thewrightcenter.com

"The [Centers of Excellence] were designed to engage the community to identify all persons with OUD and make sure every person with OUD achieves optimal health."51

Background

Overdose deaths involving fentanyl or other synthetic opioids have skyrocketed in over the past 10 years in the United States.52 An average of 14 people a day die from opioid-involved overdoses in Pennsylvania, making the opioid epidemic the state's foremost public health and public safety crisis.53 To combat this devastating epidemic, coordinated care for individuals with opioid use disorder (OUD) is essential. By providing comprehensive treatment plans that address both physical and behavioral health needs, healthcare providers can improve patient outcomes and reduce the risk of relapse.54 When individuals with OUD are actively engaged in their care, they are more likely to achieve long-term recovery and live fulfilling lives.55

To address the growing OUD epidemic in the state, in September 2016, Pennsylvania launched the Opioid Use Disorder Centers of Excellence (OUD-COE) program with the goal of increasing access to treatment for individuals with OUD and to keep them engaged in their care. The Centers of Excellence (COEs) are incentivized to create community-based care management teams that provide comprehensive care management, care coordination, transitional/follow-up care, patient and family support, and referral to community/social support services in an integrated care setting. The Wright Center, a Patient-Centered Medical Home (PCMH) in Northeast Pennsylvania providing primary care, maternal and child healthcare, behavioral healthcare, and dental care to the residents of Luzerne, Lackawanna, Wyoming, and Wayne counties, was one of the first community programs selected to participate in the OUD-COE program. The location was selected after its CEO, Dr. Linda Thomas-Hemak, decided to apply for the program following the overdose of a young patient she had treated since childhood.

Intervention

The goals of the Pennsylvania OUD-COE program as implemented at The Wright Center include:

  • Reducing deaths of patients with OUD, with a secondary goal of reducing costs in the process.
  • Increasing access to treatment by meeting the patient where they are.
  • Ensuring that patients with OUD remain in treatment with a plan in place for follow-up care, following the example of any other chronic condition and putting treatment first.
  • Building strong collaborative partnerships with the community to maximize patient resources.
  • Providing team-based, whole-person care in an integrated care setting.

When the OUD-COE program began, The Wright Center collaborated with a community-based substance use disorder (SUD) clinic to provide the medications for opioid use disorder (MOUD) and connect with a network of community resources to assist with addressing HRSN. As a PCMH, the Wright Center had staff to support this work, including licensed clinical social workers, licensed professional counselors, psychiatrists, and psychiatric nurse practitioners, while the collaborating SUD clinic provided substance use counselors.

The Wright Center's PCMH approach and treatment team structure offers several benefits, including:

  • Ethnic Diversity: The clinic's staff includes healthcare professionals from over fifty different countries through its residency programs, ensuring a broad reach to diverse patient populations.
  • Patient-Centered Approach: The team prioritizes patient well-being and health, ensuring that patients get appropriate medication, go to psychosocial support as needed, etc.
  • Tailored Treatment: The team integrates external resources to meet patient needs, such as a Medicaid-accepting dental program.
  • Connection to Community Resources: Peer recovery specialists and community health associates help to address HRSN, such as housing, transportation, employment, food, etc. Care managers help with coordination between patients and clinicians.

All staff are trained in trauma-informed care, as trauma is very widespread among people with OUD and every person admitted to the program is assessed using the Accountable Health Communities (AHC) HRSN Screening Tool, Patient Health Questionnaire (PHQ-9), the Brief Assessment of Recovery Capitol (BARC-10) and other screening tools. Program staff are then required to complete referrals to community resources to address any identified HRSN. The goal is to reduce barriers to treatment participation and to support recovery. Completed referrals with documentation that services have been received are required for Medicaid OUD-COE payment.

To address OUD in pregnant and postpartum women, the Wright Center has the Healthy Maternal Opiate Medical Support (MOMS) program. The program helps with things like diapers and car seats, and all local maternity specialists are familiar with the program to refer patients as needed. There are currently 145 women active in the program.

The Wright Center and other Pennsylvania OUD-COEs have built a strong network of community partners to help them address gaps in services. They share a philosophy that collaboration is essential to whole-person care and that competition with other community organizations is a barrier. The Wright Center has regular bi-weekly meetings with outpatient providers to ensure patients are getting any needed outpatient treatment and supports that it does not offer. The Medicaid behavioral health managed care organization that serves the multi-county region also brings all regional COEs together for a monthly meeting to give updates and discuss barriers and how to resolve them.

Funding

The Pennsylvania OUD-COE program was initially funded in 2016 by start-up grants from the Commonwealth of Pennsylvania but was converted to a Medicaid-funded model in 2019. The Wright Center and other COEs bill managed care organizations directly for the essential elements and services provided for behavioral healthcare management, including care management and referrals to address HRSN, while direct treatment such as counseling, medications, and medical care are paid for through a fee-for-service model.

Results

Staff were initially hesitant to adopt the new program design. Early implementation was stressful because the new program design was unfamiliar and different from the "traditional" model of SUD treatment, which excludes harm reduction or attention to HRSN. Over time, staff have embraced the program and have adapted to meeting people with OUD where they are. The team, along with the program and services offered, has also grown in size. The number of active patients in MOUD treatment has increased from 159 in 2019 to 757 in 2024.

Full patient outcome data are not yet available, but increasing patient engagement in care is a main goal of the Pennsylvania OUD-COE program. The metrics below reflect the percent of patients in the program that have achieved different durations of engagement:

  • Less than a month — 8 percent
  • 1-3 months — 16 percent
  • 4-6 months — 10 percent
  • 7-11 months — 18 percent
  • 12-23 months — 17 percent
  • Over two years — 30 percent

Based on these data, 65 percent of the 757 active patients receiving treatment at the Wright Center COE have been engaged for more than 6 months.56 Of these patients, 62 percent are Medicaid recipients, 20 percent use private insurance, 10 percent have Medicare, and 5-6 percent are uninsured (their services are county-funded). Patients are predominately white (due in large part to the regional demographics) and similar to patients served by the other COEs, have co-occurring behavioral and physical health conditions, and need help navigating the care system and staying engaged in treatment.57 The Wright Center is trying to increase engagement and treatment among LGBTQ+ and black and brown communities in northeastern Pennsylvania using grant funds awarded by the National Association of Rural Health Centers. These funds would address OUD, pain management, and stigma in these communities.

Key Takeaways

The COE Program at the Wright Center demonstrates that even PCMHs with fully integrated, collaborative care teams can still benefit from partnerships with community organizations to achieve whole-person care, especially for high-need populations such as patients with OUD. Since the origin of the COE program, the Wright Center staff have learned several things:

  • It Takes a Village: Prioritize people over competition. Build a community strategic plan and strong relationships to earn the community's trust, as well as the patient's.
  • Stigma-Free Approach: Treat OUD like any other chronic condition.
  • Lead with Empathy: Empathy is required to engage people, and more models for change need to consider empathy. Otherwise, the provider becomes one more person a high-needs patient feels they cannot trust.
  • The Here and Now: A medication-first approach saves lives. Scheduling a counseling session for the future will not save a patient that day.
  • Adapt and Learn: A new model will not be perfect on Day 1 of implementation, so every day is a learning experience. Keep track of improvement opportunities to mitigate risk.

Approach to Community Engagement

When the COE Program at the Wright Center began, it was an excellent example of a primarily externally focused approach to community engagement (Figure 2). Wright Center staff identified and collaborated with a substance use disorder (SUD) clinic in the community to provide the medications for opioid use disorder (MOUD), as well as to connect patients with community resources to assist their social needs. However, over time, their approach broadened to include internally focused strategies. For example, when launching the MOMS program, which provides diapers and other essential care items to pregnant and postpartum mothers with OUD in addition to making community referrals, the Wright Center conducted outreach to all local maternity specialists to raise awareness of the program and generate referrals. The Wright Center has established regular communication and coordination channels with community partners, fostering strong relationships and solidifying its position as a trusted resource within the community. Continued and routine engagement with the community through both internal and external pathways has led to strong organizational relationships and to the Wright Center becoming a fixture within the counties it serves.

Whole-person care is a person-centered approach that considers the broader factors influencing health outcomes and emphasizes longitudinal relationships and comprehensive interdisciplinary, team-based care. Supporting whole-person care in primary care practices can increase access to care and quality of care and improve patient health outcomes and health care utilization.

Community engagement is essential for achieving whole-person care in primary care practices. Community engagement helps build trusting relationships with community organizations and local agencies that can address the health factors and unmet health-related social needs that are driving poor health outcomes.

Primary care practices can engage the community by reaching out to community programs to understand local needs and adapt their practices accordingly and/or by identifying patient needs and seeking out community programs to address them. These approaches are mutually beneficial, and when supported by ongoing collaboration and two-way communication, both lead to increased community engagement.

Primary care practices can use the following strategies, derived from the four case studies in this brief, in to engage the community to support whole-person care.

  1. Identify A Need: Review practice data, review a local needs assessment, distribute surveys, host focus groups, or contact a community organization to identify specific areas of need. Cherokee Health Systems noticed that their internal data indicated a lower rate of prenatal care utilization among their Latino patient population than the national average reported by HRSA, leading to a partnership with community-based organization Centro Hispano de East Tennessee to provide language-concordant prenatal care.
  2. Establish Collaborative Leadership: Assemble multidisciplinary teams involving practice leadership, behavioral health specialists, community representatives, and patients to oversee community engagement initiatives. For example, the HopeCentral Clinic created the VFAAB, an advisory board comprised of families, community members, and healthcare providers working together to address the needs of Vietnamese families with autism spectrum disorder in a culturally sensitive and linguistically appropriate manner.
  3. Identify Diversified Funding Sources: Explore multiple funding sources, including grants, managed care organizations, Medicaid, and community donations, to ensure long-term sustainability of your community engagement initiatives. The Supporting Families Growing Together Initiative leveraged a combination of grants and internal funding to sustain their program, providing ongoing support to the young children and families they serve.
  4. Use Diverse Engagement Tactics: Use a variety of strategies to facilitate ongoing communication and collaboration with the community, such as meetings, focus groups, advisory boards, coalitions, and community mapping. Cherokee Health Systems successfully engaged the Latino women in their community by partnering with Centro Hispano de East Tennessee to conduct focus groups and identify their specific needs.
  5. Assemble Comprehensive, Interdisciplinary Care Teams: Adopt a team-based approach that integrates medical, behavioral health, specialty care, and social services to distribute tasks like HRSN screening, care management, coordination, and education. The Supporting Families Growing Together Initiative, for example, embedded Early Childhood Support Specialists into pediatric primary care teams to coordinate with community resources, connect families to services, and provide holistic support, while primary care providers focused on medical assessments and treatment.
  6. Build Strong Referral Networks: Establish referral systems with community organizations, health departments, social services programs, and other providers to address social, emotional, and medical needs. For example, the Pennsylvania OUD-COE at The Wright Center developed strong referral relationships with local substance abuse treatment providers and maternity specialists to ensure that patients with opioid use disorder had access to treatment.
  7. Conduct Continuous Quality Improvement: Implement ongoing evaluation processes to collect feedback and data and allow for adaptation and responsiveness to changing needs. The Pennsylvania OUD-COE at The Wright Center regularly conducted internal bi-weekly meetings and regional monthly meetings to assess the effectiveness of their community-based care management approach and make necessary adjustments to address barriers or fill gaps.

Conducting Community Engagement

Evaluating Community Engagement

Funding Community Engagement

Creating Team-Based Care in Primary Care

Assessing Health-Related Social Needs in Primary Care

Authors

  • Monique Thornton, MPH - CEO, Let's Talk Public Health
  • Danielle Durant, PhD, MS, MS, MBA - Principal Research Associate, Westat
  • Alec Hester, BS - Research Associate, Westat

Case Study Contributors

  • Case Study 1: The CUNA Program, Cherokee Health Systems and Centro Hispano de East Tennessee
    • Ashley Breazeale, PhD and Eboni Winford, PhD (Cherokee Health Systems)
  • Case Study 2: Vietnamese Family Autism Advisory Board, HopeCentral Clinic
    • Thanh Kirkpatrick, MD and Patricia Scott, MD (HopeCentral Clinic)
  • Case Study 3: Supporting Families Growing Together Initiative, MaineHealth System
    • Stephen DiGiovanni, MD (MaineHealth Primary Care Clinics Portland)
  • Case Study 4: Pennsylvania Opioid Center of Excellence Model, The Wright Center
    • Scott Constantini, AVP, Primary Care and Recovery Services Integration (The Wright Center for Community Health)

Other Contributors

  • Garrett E. Moran, PhD - Principal, Moran Consulting
  • Rebecca F. Noftsinger, BA - Senior Study Director, Westat

Acknowledgements

We thank reviewers and other contributors from the Agency of Healthcare Quality and Research (AHRQ), National Integration Academy Council (NIAC), and Westat for sharing their time and expertise to develop, improve, and publish this work.

Suggested Citation

Thornton M, Durant D, Hester A. How Community Engagement Can Support Whole-Person Primary Care. Rockville, MD: Agency for Healthcare Research and Quality; September 2024. https://integrationacademy.ahrq.gov/products/topic-briefs/oud-low-threshold-treatment.

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