Need for Improved Collection and Harmonization of Rural Maternal Healthcare Data.

Representation in data sets is critical to improving healthcare for the largest possible number of people. Unfortunately, pregnancy is a very understudied period of time. Further, the gap in available data is wide between pregnancies in urban areas versus rural areas. There are many limitations in the current data that is available. Herein, we review these limitations and strengths of available data sources. In addition, we propose a new mechanism to enhance the granularity, depth, and speed with which data is made available regarding rural pregnancy.

Advancing pediatric primary care practice: Preparing youth for transition from pediatric to adult medical care, a quality improvement initiative.

BACKGROUND: Despite well-known guidelines to prepare adolescents to transition to adult care, research has shown that this is done less than 25% of time in pediatric practice. This quality improvement (QI) project aimed to improve the transition readiness process for all adolescents aged 14-18 at health care maintenance visits. METHODS: A multidisciplinary team conducted a quality improvement initiative in a large, urban pediatric academic teaching practice serving a low-income, multi-ethnic population. The team developed transition interventions through successive Plan-Do-Study-Act cycles. They included a formal transition readiness assessment tool, provider-delivered education related to transition readiness, and delivery of a transition brochure for all adolescents. The team used run charts to follow the rate of formal transitions discussions documented in the electronic medical record. RESULTS: Over the course of 36 months the outcome measure of provider documented transition readiness discussions increased from 19 to 64% of the time. Over the same course of time, the process measures of transition brochure distribution and completion of the readiness assessment tool increased from 0 to 94% and 0 to 84% respectively. CONCLUSIONS: QI methodology and multidisciplinary coordinating to streamline workflow, distribution of transition information, readiness assessment and provider discussion and documentation can be successfully incorporated into a busy primary care setting. By formalizing and standardizing the transition readiness process, pediatric providers can improve young adults' readiness to transition to adult medical care.

Integrating childhood TB: applying the care delivery value chain to improve pediatric HIV/TB services in Togo, West Africa.

The World Health Organization has prioritized integrating tuberculosis (TB) and human immunodeficiency virus (HIV) services. Diagnosis of HIV/TB coinfection in children remains a challenge worldwide for numerous reasons. The care delivery value chain (CDVC) is an effective tool that can be applied as a systemic framework for assessing health care delivery. Our objective was to apply the CDVC framework to improve pediatric HIV/TB care at an HIV center in northern Togo that serves over 130 children and 1000 adults living with HIV. Using the CDVC framework, gaps in HIV/TB care were identified, and services related to screening and diagnosis were prioritized to implement 3 distinct quality improvement cycles. Primary outcomes included percentage of children screened for TB by medical providers and percentage of diagnostic sample results received at the HIV clinic for children and adults. Improvements in the TB diagnostic process were observed, resulting in a change of sputum sample results received for both children and adults from 25% at baseline to >88% at 3 months. Given the relative low associated costs, this QI approach may be applicable and feasible in other settings to target screening and diagnosis of TB for children living with HIV worldwide.

Implicit and explicit: a scoping review exploring the contribution of anthropological practice in implementation science.

BACKGROUND: This study's goal is to identify the existing variation in how, why, and by whom anthropological practice is conducted as part of implementation science projects. As doctorally trained anthropologists, we sought to characterize how and why the term "ethnography" was variously applied in the implementation science literature and characterize the practice of anthropology within and across the field. METHODS: While we follow the PRISMA-ScR checklist, we present the work with a narrative approach to accurately reflect our review process. A health services librarian developed a search strategy using subject headings and keywords for the following databases: PubMed, Embase (Elsevier), Cochrane CENTRAL (Wiley), CIHAHL (EBSCO), PsycINFO (EBSCO), Web of Science Core Collection, and Anthropology Plus (EBSCO). We focused on the practice of anthropology in implementation research conducted in a healthcare setting, in English, with no date restrictions. Studies were included if they applied one or several elements of anthropological methods in terms of study design, data collection, and/or analysis. RESULTS: The database searches produced 3450 results combined after duplicates were removed, which were added to Rayyan for two rounds of screening by title and abstract. A total of 487 articles were included in the full-text screening. Of these, 227 were included and received data extraction that we recorded and analyzed with descriptive statistics in three main domains: (1) anthropological methods; (2) implementation science methods; and (3) study context. We found the use of characteristic tools of anthropology like ethnography and field notes are usually not systematically described but often mentioned. Further, we found that research design decisions and compromises (e.g., length of time in the field, logistics of stakeholder involvement, reconciling diverse firsthand experiences) that often impact anthropological approaches are not systematically described. CONCLUSIONS: Anthropological work often supports larger, mixed-methods implementation projects without being thoroughly reported. Context is essential to anthropological practice and implicitly fundamental to implementation research, yet the goals of anthropology and how its practice informs larger research projects are often not explicitly stated.

A mixed-methods analysis to understand the implementation of a multistakeholder research consortium: Environmental influences on child health outcomes (ECHO).

Introduction: Large, transdisciplinary research consortia have increasingly been called upon to address complex and challenging health problems. The National Institutes of Health's (NIH) Environmental influences on Child Health Outcomes (ECHO) Program developed multisite collaboration strategies to promote impactful collaborative observational research on child health. Team science and implementation science offer theoretical and methodological structure to answer questions about the strategies that facilitate successful consortia. We sought to characterize the elements and conditions that influence the implementation of a complex, interdisciplinary longitudinal research program, ECHO. Methods: Informed by the Practical, Robust, Implementation and Sustainability Model, our ethnographic research included semi-structured interviews with internal stakeholders and program evaluation metrics. We conducted template and matrix analysis and triangulated the qualitative and quantitative data to understand the implementation of ECHO. Results: Between February and May 2022, we conducted 24 virtual interviews with representatives from ECHO components. The main cross-cutting topics that emerged from thematic analysis were collaboration and team science; communication and decision-making; data processes and harmonization; and diversity, equity, and inclusion. Both the qualitative and secondary quantitative evaluation data provided insights into the reach, adoption, implementation, and effectiveness of the program. Conclusion: A large, multidisciplinary research consortium such as ECHO has produced conceptual, instrumental, capacity building, and connectivity impact for internal and external stakeholders. Facilitators included infrastructure that supported collaboration and learning, alignment of data processes, and harmonization. Opportunities for enhanced impact include multidisciplinary, multimethod communication strategies, and alignment of research priorities.

All Quality Improvement Is Health Equity Work: Designing Improvement to Reduce Disparities.

Quality improvement (QI) can be a critical means by which to achieve equity in health and health care. QI efforts, however, often fail to be designed and implemented through the lens of health equity. In this article, we will discuss the current state of the intersection between QI and health equity, then lay out specific steps researchers and practitioners can take to ensure that their QI work reduces, rather than increases or maintains, existing disparities. These steps include first, understanding existing disparities and, second, utilizing community engagement to ensure that QI enhances health equity. Before embarking on QI work, QI practitioners should first examine their metric of interest by patient characteristics, starting with race and ethnicity, language, and markers of access to care and socioeconomic status. Developing an understanding of existing disparities relevant to the QI project will ensure that the QI interventions can be designed to be most effective in the disadvantaged populations, thus increasing the likelihood that the intervention reduces existing disparities. In designing QI interventions, practitioners must also plan engagement with stakeholder populations ahead of time, to carefully understand their needs and priorities and how best to address them through QI efforts.

Implementing PrEP Services in Diverse Health Care Settings.

BACKGROUND: Uptake of pre-exposure prophylaxis (PrEP) in the US has been limited. Evidence for why and how PrEP has been successfully integrated into some clinical settings, but not in others is minimal. To address this gap, we conducted a qualitative study to identify contextual factors that facilitated and challenged the implementation of PrEP services. SETTING: In partnership with the NYC Department of Health, we convened a planning committee with expertise with groups highly affected by the HIV epidemic employed in diverse health care settings, to guide the project. Representatives from programs within New York were targeted for participation initially and subsequently expanded nationally to enhance diversity in program type. METHODS: Using an interview guide informed by the Consolidated Framework for Implementation Research, we conducted 20 interviews with participants who successfully implemented PrEP programs in different settings (eg, primary care, emergency department, sexual health clinics), using different delivery models. We used template and matrix analysis to identify and characterize contextual determinants and implementation strategies. RESULTS: Participants frequently described determinants and strategies fluidly and conceptualized them in context-specific terms. Commonly discussed Consolidated Framework for Implementation Research constructs included implementation climate (tension for change, compatibility, relatively priority), stakeholders' knowledge (or lack thereof) and beliefs about PrEP, and costs associated with PrEP implementation. CONCLUSION: Our work identifies patterns in PrEP program implementation, describing how organizations dealt with determinants in their own context. Our research points to the need to connect rigorous implementation research with how frontline implementers conceptualize their work to inform and improve PrEP implementation.

Implementation of a Maternal Child Knowledgebase.

To advance the application of clinical data to address maternal health we developed and implemented a Maternal Child Knowledgebase (MCK). The MCK integrates data from every pregnancy that received care at the University of Iowa Hospitals & Clinics (UIHC) and links information from the pregnancy episode to the delivery episode and between the mother and child. This knowledgebase contains integrated information regarding diagnoses, medications, mother and child vitals, hospital admissions, depression screenings, laboratory value results, and procedure information. It also collates information from the electronic health record (EPIC), the Social Security Death Index, and the Medication Administration Record into one knowledgebase. To enhance usability, we designed a custom viewer with several pre-designed queries and reports that eliminates the need for users to be proficient in SQL coding. The recent implementation of the MCK has supported multiple projects and reduced the number of Obstetrics-related data queries to the Biomedical Informatics group.

Characteristics of Environmental influences on Child Health Outcomes (ECHO) Cohorts Recruited During Pregnancy.

PURPOSE: The objective of this study was to characterize the study designs, recruitment strategies, and other study characteristics among cohorts that initiated during pregnancy as part of the Environmental influences on Child Health Outcomes (ECHO) program. METHODS: ECHO research programs (cohorts) were reviewed. Only those who had or were currently recruiting during pregnancy were surveyed in 2018 about research recruitment strategies (participant incentives, study burden, community collaboration, and cultural adaptations). Data are presented with cohort characteristics (location, inclusion and exclusion criteria, sociodemographics, medical information, behavioral factors, and biospecimens). RESULTS: Forty-seven of the 84 ECHO pediatric cohorts recruited during pregnancy. Findings demonstrate various recruitment strategies, domains of data collection, and biospecimen collection are all characteristics of successful cohorts. CLINICAL IMPLICATIONS: These data that include over 50,000 children from families across the country, many in underserved areas, will be used for research with the potential to lead to profound policy changes. Prenatal conditions such as maternal age, obesity, depression, and drug use can be examined using study data, including biological markers, from pregnancy through childbirth and into childhood and will inform national policies on the role of early life exposures and underlying mechanisms of disease progression.

A National Measurement Framework to Assess and Improve Sickle Cell Care in 4 US Regions.

OBJECTIVES: Coordinated measurement strategies are needed to inform collaborative approaches to improve access to and quality of care for persons with sickle cell disease (SCD). The objective of our study was to develop a multilevel measurement strategy to assess improvements in access to and quality of care for persons with SCD in 4 US regions. METHODS: From 2014 through 2017, regional grantees in the Sickle Cell Disease Treatment Demonstration Program collected administrative and patient-level electronic health record (EHR) data to assess quality improvement initiatives. Four grantees-covering 29 US states and territories and an SCD population of 56 720-used a collective impact model to organize their work. The grantees collected administrative data from state Medicaid and Medicaid managed care organizations (MCOs) at multiple points during 2014-2017 to assess improvements at the population level, and local patient-level data were abstracted from site-level EHRs at regular intervals to track improvements over time. RESULTS: Administrative data were an important source of understanding population-level improvements but were delayed, whereas patient-level data were more sensitive to small-scale quality improvements. CONCLUSIONS: We established a shared measurement approach in partnership with Medicaid and Medicaid MCO stakeholders that can be leveraged to effectively support quality improvement initiatives for persons with SCD in the United States.

Rigorous and practical quality indicators in sickle cell disease care.

In recent years, several sickle cell-specific quality indicators have been developed using rigorous approaches. A review of the history and current status of the development of sickle cell-specific indicators highlights opportunities for future refinement. Despite efforts at alignment, lack of strong evidence hinders the adoption of current quality indicators across stakeholder groups. There are many directions in which to take the current existing quality indicators, including expanding to different age groups, aims of care such as safety and equity, and better understanding of contextual and environmental factors.

Quality Indicator Development for Positive Screen Follow-up for Sickle Cell Disease and Trait.

Extensive variation exists in the follow-up of positive screens for sickle cell disease. Limited quality indicators exist to measure if the public health goals of screening-early initiation of treatment and enrollment to care-are being achieved. This manuscript focuses on the development of quality indicators related to the follow-up care for individuals identified with sickle cell disease and trait through screening processes. The authors used a modified Delphi method to develop the indicators. The process included a comprehensive literature review with rating of the evidence followed by ratings of draft indicators by an expert panel held in September 2012. The expert panel was nominated by leaders of various professional societies, the Health Resources and Services Administration, and the National Heart, Lung, and Blood Institute and met face to face to discuss and rate each indicator. The panel recommended nine quality indicators focused on key aspects of follow-up care for individuals with positive screens for sickle cell disease and trait. Public health programs and healthcare institutions can use these indicators to assess the quality of follow-up care and provide a basis for improvement efforts to ensure appropriate family education, early initiation of treatment, and appropriate referral to care for individuals identified with sickle cell disease and trait.

Improving Sickle Cell Transitions of Care Through Health Information Technology.

INTRODUCTION: Transitions between inpatient and outpatient care and pediatric to adult care are associated with increased mortality for sickle cell disease (SCD) patients. As accurate and timely sharing of health information is essential during transitions, a health information technology (HIT)-enabled tool holds promise to improve care transitions. METHODS: From 2012 through 2014, the team conducted and analyzed data from an environmental scan, key informant interviews, and focus groups to inform the development of an HIT-enabled tool for SCD patients' use during care transitions. The scan included searches of peer-reviewed and gray literature to understand SCD patient needs, transition concerns, and best practices in mobile health applications, and searches of websites and online stores to identify existing transition tools and their features. Eleven focus groups consisted of four groups of SCD patients of varying ages (≥9 years); three groups of parents/caregivers of SCD patients; three groups of providers; and one with IT developers. RESULTS: In focus groups, patients and caregivers reported that the transition from home to the emergency department (ED) was the most challenging; the ED was also where transitions from pediatric to adult care usually occurred. Patients felt they were not taken seriously by unfamiliar ED providers, and their inability to convey their diagnosis, pain regimen, and detailed medical history while in significant pain hindered care. CONCLUSIONS: The environmental scan did not reveal an existing suitable transition tool, but patients, parents, providers, and IT experts saw the potential and appeal of creating a tool to meet ED health information needs to improve care transitions.