Lessons learned in the practice of community-based participatory research with community partner collaboration in study design and implementation: the community scientist model.

Engagement of community participation is an innovative driver of modern research. However, to benefit the communities being studied, it is imperative to continuously evaluate ethical considerations, the relationship dynamic between researchers and community members, and the responsiveness of research teams to the needs and preferences of communities. Northwestern University's Center for Health Equity Transformation founded a community scientist program in 2018 that implemented a study using the Community-Based Participatory Research (CBPR) model. This project is an ongoing study of heavy metal exposure by geographic location in Chicago. Community scientists from various backgrounds, communities, and organizations formed an advisory panel, partnering with the cancer research team. This commentary describes lessons learned in structuring meaningful community involvement and benefit in CBPR, with a focus on three lessons learned that relate to ethics, relationships, and responsiveness. Our findings lay new groundwork for iteratively shaping best practices in CBPR.

The Dobbs Double Bind: Lessons From Substance Use Disorder on the Conflict Between Privacy and Quality Care.

The Dobbs decision overturned the right to abortion in the United States and allowed states to enact total abortion bans. In addition to restricting access to abortion, laws criminalizing pregnancy outcomes deter providers from offering timely, appropriate care for pregnancy complications. To avoid litigation or prosecution, providers are under pressure to strictly guard the privacy of patient health information related to pregnancy. Perinatal care is at risk of repeating the experience of similar enhanced privacy rules for substance use disorders, which have impeded information sharing and care coordination that improves outcomes.

Project MED (Medicine, Exposure, and Development): Promoting Access to Healthcare Education for Historically Underrepresented Groups Through Community Engagement, Sustainability, and Technology.

In the U.S., disparities in the healthcare workforce have led to inadequate health outcomes in communities of historically underserved groups. To address the lack of resources and opportunities in health career education for historically underserved group students, Project MED was established. The mission is to expose high school students to the breadth of opportunities in the healthcare field and to prepare students for successful careers in healthcare. Through 3 main pillars-Learn, Lead, and Launch-Project MED has developed a robust repository of 20 workshops, recruited and trained eight mentors, and curated a database of ≥100 opportunities for over 50 students.

Adverse childhood experiences and the onset of chronic disease in young adulthood.

This study examined the association of adverse childhood experiences (ACEs) with early-onset chronic conditions. We analyzed data from the 2011-2012 Behavioral Risk Factor Surveillance System (BRFSS), which included 86,968 respondents representing a nine-state adult population of 32 million. ACE questions included physical, emotional, and sexual abuse; substance use, mental illness or incarceration of a household member; domestic violence, and parental separation. Outcomes included chronic conditions (cardiovascular disease, chronic obstructive pulmonary disease, cancer, depression, diabetes, and prediabetes); overall health status; and days of poor mental or physical health in the past month. We estimated Poisson regression models of the likelihood of chronic conditions and poor health status comparing adults reporting ≥4 ACEs to respondents with no ACEs within three age strata: 18-34, 35-54 and ≥55 years. The prevalence of ≥4 ACEs was highest among youngest respondents (19%). There was a dose-response gradient between ACE scores and outcomes except for cancer in older adults. Among younger respondents, those reporting ≥4 ACEs had two to four times the risk for each chronic condition and poor health status compared to respondents reporting no ACEs. With few exceptions (depression, poor mental and physical health in the past month), incidence rate ratios were highest in young adults and successively decreased among older adults. This study is among the first to analyze patterns of association between ACEs and adult health disaggregated by age. Young adults with high ACE scores are at increased risk of early-onset chronic disease. Trauma-informed care and ACEs prevention are crucial public health priorities.

The Social Work Role in Reducing 30-Day Readmissions: The Effectiveness of the Bridge Model of Transitional Care.

The hospital experience is taxing and confusing for patients and their families, particularly those with limited economic and social resources. This complexity often leads to disengagement, poor adherence to the plan of care, and high readmission rates. Novel approaches to addressing the complexities of transitional care are emerging as possible solutions. The Bridge Model is a person-centered, social work-led, interdisciplinary transitional care intervention that helps older adults safely transition from the hospital back to their homes and communities. The Bridge Model combines 3 key components-care coordination, case management, and patient engagement-which provide a seamless transition during this stressful time and improve the overall quality of transitional care for older adults, including reducing hospital readmissions. The post Affordable Care Act (ACA) and managed care environment's emphasis on value and quality support further development and expansion of transitional care strategies, such as the Bridge Model, which offer promising avenues to fulfil the triple aim by improving the quality of individual patient care while also impacting population health and controlling per capita costs.

A Learning Health System Approach to Cancer Survivorship Care Among LGBTQ+ Communities.

PURPOSE: Lesbian, gay, bisexual, transgender, and queer (LGBTQ+) individuals who receive primary care services at community health centers are often referred to external specialty care centers after cancer diagnosis, upon which primary care services are disrupted and may be discontinued because of gaps in communication between primary and oncologic care providers. This qualitative study evaluated barriers and facilitators to effective care coordination for LGBTQ+ patients with cancer and the utility of a novel cancer care coordination tool to mitigate identified barriers. MATERIALS AND METHODS: Semistructured interviews with LGBTQ+ cancer survivors, caregivers to LGBTQ+ persons, clinical team members who provide care to LGBTQ+ patients, and members of community-based organizations that work with LGBTQ+ patients were conducted. Interview analysis was a multistage process, wherein a constant comparison approach was used. Transcripts were reviewed and coded using Atlas.ti Cloud. RESULTS: A total of 26 individuals were interviewed: 10 patients, four caregivers, 10 clinical care team members, and two community organization representatives. Interview analysis yielded insight regarding (1) LGBTQ+ patient experiences engaging with primary and oncologic care at the clinic level and (2) perceptions of patient-provider and provider-provider communication and coordination. CONCLUSION: Interview findings indicate a need for further development of interventions aimed at improving care coordination, patient experience, and outcomes in the cancer care continuum for LGBTQ+ patients. Learning health systems, like the one studied, show great potential for contributing to the development of such interventions.

How Should Representation of Subjects With LEP Become More Equitable in Clinical Trials?

Underrepresentation of individuals with limited English proficiency (LEP) who speak Spanish is ongoing in phase 3 biomedical clinical trials and exacerbates health inequity. This article suggests strategies for increasing representation of Spanish speakers in clinical rials by emphasizing the importance of early engagement with Spanish language communities, inclusive participant recruitment, and collaborative trial design and implementation. Although investigators and institutions administering government-funded research must meet federal requirements for language assistance, journal editors, peer reviewers, institutional review board members, academic health centers, and all beneficiaries of the biomedical and behavioral research enterprise in the United States must motivate linguistic inclusion.

Todavía continúa la subrepresentación de personas con un dominio limitado del inglés (LEP, por sus siglas en inglés) que hablan español en los ensayos clínicos biomédicos de fase 3 y esto exacerba la inequidad sanitaria. Este artículo propone estrategias para aumentar la representación de los hispanohablantes en los ensayos clínicos al resaltar la importancia del compromiso temprano con las comunidades de habla hispana, el reclutamiento inclusivo de participantes y el diseño e implementación de ensayos colaborativos. Aunque los investigadores y las instituciones que realizan las investigaciones financiadas por el gobierno deben cumplir con los requisitos federales respecto de la asistencia lingüística, los editores de revistas, los revisores inter pares, los miembros de las juntas de revisión institucionales, los centros académicos de salud y todos los beneficiarios de las empresas de investigación biomédica y conductual en los Estados Unidos deben motivar la inclusión lingüística.

Connecting Social, Clinical, and Home Care Services for Persons with Serious Illness in the Community.

The medical, psychological, cognitive, and social needs of older adults with serious illness are best met by coordinated and team-based services and support. These services are best provided in a seamless care model anchored by integrated biopsychosocial assessments focused on what matters to older adults and their social determinants of health; individualized care plans with shared goals; care provision and management; and quality measurement with continuous improvement. This model requires (1) racially and ethnically diverse healthcare professionals, including mental health and direct service workers, with training in aging and team collaboration; (2) an integrated network of community-based organizations (CBOs) providing in-home services; (3) an electronic communication platform that spans the system of providers and organizations with skilled technology staff; and (4) payment models that incentivize team-based care across the continuum of services, including CBOs, with adequate salaries and academic loan forgiveness to recruit and retain high-quality team members. Assuring that this model is effective requires ongoing quality assurance measures that include not only quality of care and utilization data to demonstrate cost offsets of service integration, but also quality of life for both the older adults and the family members caring for them. Although this may seem a lofty ideal in comparison with our current fragmented system, we review models that provide the key elements effectively and cost efficiently. We then propose an Essential Care Model that defines best practice in meeting the needs of older adults with serious illness and their families. J Am Geriatr Soc 67:S412-S418, 2019.