Immigrant Mothers' Perspectives on Pediatric Primary Care: Challenges and Solutions to Improve Medical Home Use.

Children in immigrant families (CIF) constitute 25% of all children in the United States. Known barriers to accessing and navigating the health care system for immigrants (i.e., poverty, fear, limited English proficiency, lack of insurance) lead to decreased medical home establishment among CIF, although the ways in which these obstacles affect medical home access are less studied. With a focus on Congolese, Afghan, Syrian/Iraqi, and Central American immigrants, key informant interviews and focus groups were conducted to identify mothers' perceptions of and experiences with pediatric primary health care. Five common themes emerged: mothers' critical role in children's health, uniqueness of the U.S. health care system, logistical challenges, influence of prior clinical experiences, and importance of culturally appropriate communication. Few, but distinct, differences among the groups revealed specific obstacles for individual populations. Improving rates of medical home use among CIF requires targeted, immigrant-informed approaches that involve population outreach as well as systems-level changes.

What Patients Want in a Transgender Center: Building a Patient-Centered Program.

Gender affirmation is standard medical care, and community input is an essential component of patient-centered care. This study shares how our organization assessed patients' perceptions of health care organizations that provide gender-affirming care. Building on qualitative interview data, we distributed an online survey via a lesbian-gaybisexual-transgender-queer research firm. The survey was completed by 314 transgender individuals residing in 37 U.S. states and territories. Most respondents (69%) reported negative experiences seeking health care. Patients would travel long distances for competent providers and were more willing to seek care from an institution actively working to change a formerly negative reputation. Patients described high-quality organizations as prioritizing staff training (95.5%), having inclusive policies (93.3%), and hiring expert staff (86.0%). Programs should ensure cultural competency training for all staff. They should recruit and retain providers skilled in transgender medicine, especially trans-identified providers. Patient experience and reputation in the community influence where patients seek care.

Pathways to democratized healthcare: Envisioning human-centered AI-as-a-service for customized diagnosis and rehabilitation.

The ongoing digital revolution in the healthcare sector, emphasized by bodies like the US Food and Drug Administration (FDA), is paving the way for a shift towards person-centric healthcare models. These models consider individual needs, turning patients from passive recipients to active participants. A key factor in this shift is Artificial Intelligence (AI), which has the capacity to revolutionize healthcare delivery due to its ability to personalize it. With the rise of software in healthcare and the proliferation of the Internet of Things (IoT), a surge of digital data is being produced. This data, alongside improvements in AI's explainability, is facilitating the spread of person-centric healthcare models, aiming at improving health management and patient experience. This paper outlines a human-centered methodology for the development of an AI-as-a-service platform with the goal of broadening access to personalized healthcare. This approach places humans at its core, aiming to augment, not replace, human capabilities and integrate in current processes. The primary research question guiding this study is: "How can Human-Centered AI principles be considered when designing an AI-as-a-service platform that democratizes access to personalized healthcare?" This informed both our research direction and investigation. Our approach involves a design fiction methodology, engaging clinicians from different domains to gather their perspectives on how AI can meet their needs by envisioning potential future scenarios and addressing possible ethical and social challenges. Additionally, we incorporate Meta-Design principles, investigating opportunities for users to modify the AI system based on their experiences. This promotes a platform that evolves with the user and considers many different perspectives.

Contributions of Key Components of a Medical Home on Child Health Outcomes.

OBJECTIVES: The medical home model is a widely accepted model of team-based primary care. We examined five components of the medical home model in order to better understand their unique contributions to child health outcomes. METHODS: We analyzed data from the 2016-2017 National Survey of Children's Health (NSCH) to assess five key medical home components - usual source of care, personal doctor/nurse, family-centered care, referral access, and coordinated care - and their associations with child outcomes. Health outcomes included emergency department (ED) visits, unmet health care needs, preventive medical visits, preventive dental visits, health status, and oral health status. We used multivariate regression controlling for child characteristics including age, sex, primary household language, race/ethnicity, income, parental education, health insurance coverage, and special healthcare needs. RESULTS: Children who were not white, living in non-English households, with less family income or education, or who were uninsured had lower rates of access to a medical home and its components. A medical home was associated with beneficial child outcomes for all six of the outcomes and the family-centered care component was associated with better results in five outcomes. ED visits were less likely for children who received care coordination (aOR 0.81, CI 0.70-0.94). CONCLUSIONS FOR PRACTICE: Our study highlights the role of key components of the medical home and the importance of access to family-centered health care that provides needed coordination for children. Health care reforms should consider disparities in access to a medical home and specific components and the contributions of each component to provide quality primary care for all children.

Operationalizing Equity-centered Implementation Through Person-centered Care Capacity-building with HIV Service Organizations: The SUSTAIN Approach.

Capacity-building in trauma-informed care and harm reduction approaches with Southern HIV service organizations must be implemented in ways that foster trust and spur organizational change. Using an equity-centered implementation science framework, this study examines implementation strategies of the SUSTAIN COMPASS Coordinating Center's person-centered care (PCC) capacity-building interventions. METHODS: Fifty-eight (58) in-depth qualitative interviews with staff (N=116) who received PCC capacity-building were analyzed using modified grounded theory. RESULTS: Analysis identified four factors of equity-centered implementation that facilitated PCC capacity-building implementation. 1) Innovation factors: SUSTAIN models PCC approaches when implementing PCC capacity-building. 2) Inner factors: SUSTAIN employs PCC approaches. 3) Outer factors: SUSTAIN highlights socio-political factors that may influence PCC implementation. 4) Bridging factors: SUSTAIN facilitates partnerships to promote PCC learning and sustainability. CONCLUSION: SUSTAIN PCC capacity-building advances health equity through operationalizing personcentered care in capacity-building implementation.

Telehealth: Opportunities to Improve Access, Quality, and Cost in Pediatric Care.

The use of telehealth technology to connect with patients has expanded significantly over the past several years, particularly in response to the global coronavirus disease 2019 pandemic. This technical report describes the present state of telehealth and its current and potential applications. Telehealth has the potential to transform the way care is delivered to pediatric patients, expanding access to pediatric care across geographic distances, leveraging the pediatric workforce for care delivery, and improving disparities in access to care. However, implementation will require significant efforts to address the digital divide to ensure that telehealth does not inadvertently exacerbate inequities in care. The medical home model will continue to evolve to use telehealth to provide high-quality care for children, particularly for children and youth with special health care needs, in accordance with current and evolving quality standards. Research and metric development are critical for the development of evidence-based best practices and policies in these new models of care. Finally, as pediatric care transitions from traditional fee-for-service payment to alternative payment methods, telehealth offers unique opportunities to establish value-based population health models that are financed in a sustainable manner.

Humanizing the intensive care unit experience in a comprehensive cancer center: A patient- and family-centered improvement study.

OBJECTIVES: Improving family-centered outcomes is a priority in oncologic critical care. As part of the Intensive Care Unit (ICU) Patient-Centered Outcomes Research Collaborative, we implemented patient- and family-centered initiatives in a comprehensive cancer center. METHODS: A multidisciplinary team was created to implement the initiatives. We instituted an open visitation policy (OVP) that revamped the use of the two-way communication boards and enhanced the waiting room experience by hosting ICU family-centered events. To assess the initiatives' effects, we carried out pre-intervention (PRE) and post-intervention (POST) family/caregiver and ICU practitioner surveys. RESULTS: A total of 159 (PRE = 79, POST = 80) family members and 147 (PRE = 95, POST = 52) ICU practitioners participated. Regarding the decision-making process, family members felt more included (40.5% vs. 68.8%, p < 0.001) and more supported (29.1% vs. 48.8%, p = 0.011) after the implementation of the initiatives. The caregivers also felt more control over the decision-making process in the POST survey (34.2% vs. 56.3%, p = 0.005). Although 33% of the ICU staff considered OVP was beneficial for the ICU, 41% disagreed and 26% were neutral. Only half of them responded that OVP was beneficial for patients and 63% agreed that OVP was beneficial for families. Half of the practitioners agreed that OVP resulted in additional work for staff. SIGNIFICANCE OF RESULTS: Our project effectively promoted patient- and family-centered care. The families expressed satisfaction with the communication of information and the decision-making process. However, the ICU staff felt that the initiatives increased their work load. Further research is needed to understand whether making this project universal or introducing additional novel practices would significantly benefit patients admitted to the ICU and their family.

The in vitro fertilization laboratory: teamwork and teaming.

Delivery of fertility treatment involves both teamwork within a discipline as well as teaming across multiple work areas, such as nursing, administrative, laboratory, and clinical. In contrast to small autonomous centers, the in vitro fertilization (IVF) laboratory team in large clinics must function both as a team with many members and a constellation of teams to deliver seamless, safe, and effective patient-centered care. Although this review primarily focuses on teamwork within the IVF laboratory, which comprises clinical laboratory scientists and embryologists who perform both diagnostic and therapeutic procedures, it also discusses the laboratory's wider role with other teams of the IVF clinic, and the role of teaming (the ad hoc creation of multidisciplinary teams) to function highly and address critical issues.

Improving medication adherence and effective prescribing through a patient-centered prescription model in patients with multimorbidity.

PURPOSE: This study aimed to assess the impact of the patient-centered prescription (PCP) model in medication adherence and effective prescribing in patients with multimorbidity. METHODS: Uncontrolled before-after study in an intermediate care facility in a mixed urban-rural district. Inpatients aged ≥ 65 years with multimorbidity exposed to polypharmacy before hospital admission were consecutively enrolled. Every patient's treatment plan was analyzed through the PCP model, which includes interventions aimed at improving medication adherence. The primary endpoint was the change in the proportion of adherent patients between pre-admission and after discharge for all regularly scheduled long-term medications, using the proportion of days covered (PDC). Secondary endpoints included the change on mean PDC for all long-term medications, number of long-term medications, proportion of patients with hyperpolypharmacy, medication regimen complexity index (MRCI) score, drug burden index (DBI) score, number of potential inappropriate prescribing (PIP), and proportion of patients with ≥ 2 PIPs. RESULTS: Ninety-three non-institutionalized patients were included (mean age 83.0 ± SD 6.1 years). The proportion of adherent patients increased from 22.1 to 51.9% (P < 0.001). Intervention also improved mean PDC [mean difference (95% CI) 10.6 (7.7, 13.5)] and effective prescribing through a reduction on the number of long-term medications [- 1.3 (- 1.7, - 0.9)], proportion of patients exposed to hyperpolypharmacy (- 16.1%, P < 0.001), MRCI score [- 2.2 (- 3.4, - 1.0)], DBI score [- 0.16 (- 1.8, - 1.3)], number of PIPs [- 1.6 (- 1.8, - 1.3)], and proportion of patients with ≥ 2 PIPs (- 53.7%, P < 0.001). CONCLUSION: Studied intervention provides significant effective prescribing and medication adherence enhancements in non-institutionalized older patients with multimorbidity and polypharmacy.

Health care network model for older adults: a co-creation and participatory action research approach / Modelo assistencial à saúde do idoso em rede: uma abordagem de cocriação e pesquisa-ação participativa

OBJECTIVE: To develop a collaborative, multidisciplinary care model for older adults that improves interdisciplinary teamwork and increases access to specialized services for frail patients, helping solve management problems in the Brazilian Unified Health System. In the state of Bahia, the health care network for older adults requires better interaction and integration with the Unified Health System and the Unified System of Social Assistance to improve patient flow in the network. METHODS: We used a co-creation and participatory action research approach based on reflection, data collection, interaction, and feedback with participants and stakeholders. Data was collected from health professionals, representatives of health agencies, and older adults through collective and individual interviews, reflective diaries, and direct communication. RESULTS: An action plan involving members of the older adult care network was developed to put the new model into practice. A pilot study with a multidisciplinary team allowed adjustments and implementation of the model at our institution. CONCLUSIONS: The new model improved both the internal management of the State Reference Center for Older Adult Health Care (Centro de Referência Estadual de Atenção à Saúde do Idoso - CREASI) and its interaction with primary care, optimizing patient flow and establishing rules for shared management between CREASI and primary care institutions. In view of this, restructuring the care model reorganized relations between the agencies, expanding CREASI's role in the management and systematization of older adult health.

OBJETIVO: Desenvolver um modelo assistencial colaborativo, multiprofissional e centrado na pessoa idosa para melhorar o trabalho em equipe interdisciplinar e o acesso de idosos frágeis ao serviço especializado, ajudando na resolução de problemas com o gerenciamento do idoso no Sistema Único de Saúde (SUS). A rede de assistência à saúde do idoso na Bahia requer avanços na interação e na integração entre os órgãos do SUS e do Sistema Único de Assistência Social para melhorar o fluxo dos pacientes na rede. METODOLOGIA: Foi realizada uma pesquisa-ação participativa e cocriação baseadas na reflexão, coleta de dados, interação e feedback com participantes e partes interessadas. A coleta dos dados foi realizada com os profissionais de saúde, representantes dos órgãos de saúde e idosos por meio entrevistas coletivas e individuais, diários reflexivos e registros de comunicação direta. RESULTADOS: Foi elaborado um plano de ação com participação dos membros da rede de assistência ao idoso para colocar em prática o novo modelo. Realizou-se um piloto com uma equipe multidisciplinar que possibilitou ajustes e a implementação do modelo na instituição. CONCLUSÕES: O novo modelo favoreceu tanto o gerenciamento interno do Centro de Referência Estadual de Atenção à Saúde do Idoso (CREASI) como a interação com a atenção básica, otimizando o fluxo de pacientes e estabelecendo regras de gerenciamento compartilhado entre CREASI e atenção básica. Diante disso, a reestruturação do modelo assistencial representou uma reorganização das relações entre os órgãos, ampliando o papel do CREASI no gerenciamento e na sistematização da saúde do idoso.

Multidisciplinary aerodigestive program at a children's hospital: A protocol for a prospective observational study.

BACKGROUND: Children with complex chronic multisystemic diseases frequently require care from multiple pediatric subspecialists. The aerodigestive program is a multidisciplinary program that diagnoses and treats pediatric patients with complex multi-systematic problems affecting airway, breathing, feeding, swallowing, or growth. The aim of this study is to present the protocol of the aerodigestive program of a children's hospital. METHODS AND DESIGN: This study is a prospective study to evaluate and compare the overall improvement of patients' objective and subjective conditions before and after the AeroDigestive Team (ADT) program. Among children from 1 month to 18 years of age, patients with complex problems of the airway, breathing, feeding, swallowing, or growth meeting at least two parameters of the inclusion criteria were enrolled. The overall process included referral based on the inclusion criteria, enrollment of ADT program with informed consents, interview and questionnaire for assessing patients' medical condition, prescheduling appointment, multi-specialists' evaluation, monthly team meetings, wrap-up discussion with the patients and family, therapeutic intervention, and follow-up at 6 months with the assessment of outcome measures. The outcome was evaluated objectively and subjectively. The objective outcome measure was divided into surgical or medical intervention, assessment of changes in medical condition, and follow-up study. Both caregiver interviews and questionnaires using a scoring system were used as subjective outcome measures before and after the ADT program. Children were scheduled to be followed-up at 6 months after the interventions or ADT meeting. DISCUSSION: The aerodigestive program is expected to provide comprehensive and multidisciplinary management of children with complex airway and digestive tract disorders.

Catalyzing Navigation for Breast Cancer Survivorship (CaNBCS) in Safety-Net Settings: A Mixed Methods Study.

PURPOSE: The current number of breast cancer survivors (BCS) in the United States is approximately 3.8 million, and this number is further expected to increase with improvement in treatments. Survivorship care plans (SCPs) are patient-centered tools that are designed to meet cancer survivors' informational needs about their treatment history, recommended health care, and health maintenance. However, the data on SCP benefits remain uncertain, especially in low-income and racial and ethnic minority cancer survivors. Patient navigation is an effective intervention to improve patient adherence and experience of interdisciplinary breast cancer treatment. OBJECTIVES: This study sought to understand the role of lay patient navigators (LPN) in survivorship care planning for BCS in safety-net settings. METHODS: This study is a mixed methods pilot randomized clinical trial to understand the role of patient navigation in cancer survivorship care planning in a public hospital. We invited BCS who had completed active breast cancer treatment within 5 years. LPNs discussed survivorship care planning and survivorship care-related issues with BCS in the intervention arm over a 6-month intervention period and accompanied patients to their primary care appointment. LPNs also encouraged survivors to discuss health care issues with oncology and primary care providers. The primary objective was to assess BCS' health-related quality of life (HRQOL). The secondary objectives were self-efficacy and implementation. We assessed implementation with 45-60-min semi-structured interviews with 15 BCS recruited from the intervention arm and 60-min focus groups with the oncologists and separately with LPNs. RESULTS: We enrolled 40 patients, 20 randomized to usual care and 20 randomized to LPN navigation. We did not find a statistically significant difference between the two arms in HRQOL. There was also no difference in self-efficacy between the two arms. Qualitative analysis identified implementation barriers to intervention that may have contributed to less effective intervention. IMPLICATIONS FOR CANCER SURVIVORS: Future survivorship care planning interventions need to consider: Cancer survivors' needs and preferences, the need for dedicated resources, and the role of electronic health records in survivorship care plan delivery.

Understanding the Delivery of Patient-Centered Survivorship Care Planning: An Exploratory Interview Study With Complex Cancer Survivors.

INTRODUCTION: Understanding key elements of the survivorship care planning process, such as patient-centered communication (PCC) and health self-efficacy, are critical for delivering patient-centered survivorship care to cancer survivors with multiple chronic conditions ("complex cancer survivors"). Building upon our team's recent research efforts to examine the survivorship care planning process from a patient-centered lens, this exploratory study leveraged an ongoing quasi-experimental trial to elucidate the experience of complex cancer survivors with survivorship care planning and post-treatment management. METHODS: We conducted a hypothesis-generating thematic content analysis on 8 interview transcripts. RESULTS: Survivors reported positive experiences communicating with their oncology care team but the presence of multiple chronic conditions in addition to cancer creates additional barriers to patient-centered survivorship care. CONCLUSION: These findings support the need for further in-depth research aimed at improving PCC across all care teams and enabling self-management by delivering more personalized survivorship care planning that aligns with survivor's needs, values, and preferences.

Evaluating the impact of integrated behavioral health intervention: Evidence from Rhode Island.

ABSTRACT: There has been a historic separation between systems that address behavioral health problems and the medical care system that addresses other health issues. Integration of the 2 has the potential to improve care.The aim of this study was to evaluate the impact of Integrated Behavioral Health program on health care utilization and costs.Claims data between 2015 and 2018 from Rhode Island's All Payers Claims Database representing 42,936 continuously enrolled unique patients.Retrospective study based on propensity score-matched difference-in-differences framework.Utilization (emergency department visits, office visits, and hospitalizations) and costs (total, inpatient, outpatient, professional, and pharmacy).Integrated Behavioral Health intervention in Rhode Island was associated with reduction in healthcare utilization. Emergency department visits reduced by 6.4 per 1000 people per month and office visits reduced by 29.8 per 1000 people per month, corresponding to a reduction of 7% and 6%, respectively. No statistically significant association was observed between the intervention and hospitalizations. The evidence was mixed for cost outcomes, with negative association recorded between the intervention and the likelihood of incurring non-zero cost but no significant association was observed between the intervention and the level of costs. This relationship held true for most of the cost measures considered.Integrated Behavioral Health intervention in Rhode Island was associated with significant reductions in emergency department visits and office visits, with no effects on hospitalizations. In terms of the cost outcomes, we found evidence that the intervention negatively affected the likelihood of incurring any non-zero costs but did not affect the level of costs.

Moving Forward in the Next Decade: Radiation Oncology Sciences for Patient-Centered Cancer Care.

In a time of rapid advances in science and technology, the opportunities for radiation oncology are undergoing transformational change. The linkage between and understanding of the physical dose and induced biological perturbations are opening entirely new areas of application. The ability to define anatomic extent of disease and the elucidation of the biology of metastases has brought a key role for radiation oncology for treating metastatic disease. That radiation can stimulate and suppress subpopulations of the immune response makes radiation a key participant in cancer immunotherapy. Targeted radiopharmaceutical therapy delivers radiation systemically with radionuclides and carrier molecules selected for their physical, chemical, and biochemical properties. Radiation oncology usage of "big data" and machine learning and artificial intelligence adds the opportunity to markedly change the workflow for clinical practice while physically targeting and adapting radiation fields in real time. Future precision targeting requires multidimensional understanding of the imaging, underlying biology, and anatomical relationship among tissues for radiation as spatial and temporal "focused biology." Other means of energy delivery are available as are agents that can be activated by radiation with increasing ability to target treatments. With broad applicability of radiation in cancer treatment, radiation therapy is a necessity for effective cancer care, opening a career path for global health serving the medically underserved in geographically isolated populations as a substantial societal contribution addressing health disparities. Understanding risk and mitigation of radiation injury make it an important discipline for and beyond cancer care including energy policy, space exploration, national security, and global partnerships.