Use of Community-Engaged Research Approaches in Clinical Interventions for Neurologic Disorders in the United States: A Scoping Review and Future Directions for Improving Health Equity Research.

BACKGROUND AND OBJECTIVES: Evidence suggests a significant prevalence of race and ethnic disparities in the United States among people with neurologic conditions including stroke, Alzheimer disease and related dementia (ADRD), Parkinson disease (PD), epilepsy, spinal cord injury (SCI), and traumatic brain injury (TBI). Recent neurologic research has begun the paradigm shift from observational health disparities research to intervention research in an effort to narrow the disparities gap. There is an evidence base that suggests that community engagement is a necessary component of health equity. While the increase in disparities focused neurologic interventions is encouraging, it remains unclear whether and how community-engaged practices are integrated into intervention design and implementation. The purpose of this scoping review was to identify and synthesize intervention studies that have actively engaged with the community in the design and implementation of interventions to reduce disparities in neurologic conditions and to describe the common community engagement processes used. METHODS: Two databases, PubMed and CINAHL, were searched to identify eligible empirical studies within the United States whose focus was on neurologic interventions addressing disparities and using community engagement practices. RESULTS: We identified 392 disparity-focused interventions in stroke, ADRD, PD, epilepsy, SCI, and TBI, of which 53 studies incorporated community engagement practices: 32 stroke studies, 15 ADRD, 2 epilepsy studies, 2 PD studies, 1 SCI study, and 1 TBI study. Most of the interventions were designed as randomized controlled trials and were programmatic in nature. The interventions used a variety of community engagement practices: community partners (42%), culturally tailored materials and mobile health (40%), community health workers (32%), faith-based organizations and local businesses (28%), focus groups/health need assessments (25%), community advisory boards (19%), personnel recruited from the community/champions (19%), and caregiver/social support (15%). DISCUSSION: Our scoping review reports that the proportion of neurologic intervention studies incorporating community engagement practices is limited and that the practices used within those studies are varied. The major practices used included collaboration with community partners and utilization of culturally tailored materials. We also found inconsistent reporting and dissemination of results from studies that implemented community engagement measures in their interventions. Future directions include involving the community in research early and continuously, building curricula that address challenges to community engagement, prioritizing the inclusion of community engagement reporting in peer-reviewed journals, and prioritizing and incentivizing research of subpopulations that experience disparities in neurologic conditions.

Why and how has the United Kingdom become a high producer of health inequalities research over the past 50 years? A realist explanatory case study.

BACKGROUND: Evidence on health inequalities has been growing over the past few decades, yet the capacity to produce research on health inequalities varies between countries worldwide and needs to be strengthened. More in-depth understanding of the sociohistorical, political and institutional processes that enable this type of research and related research capacity to be generated in different contexts is needed. A recent bibliometric analysis of the health inequalities research field found inequalities in the global production of this type of research. It also found the United Kingdom to be the second-highest global contributor to this research field after the United States. This study aims to understand why and how the United Kingdom, as an example of a "high producer" of health inequalities research, has been able to generate so much health inequalities research over the past five decades, and which main mechanisms might have been involved in generating this specific research capacity over time. METHODS: We conducted a realist explanatory case study, which included 12 semi-structured interviews, to test six theoretical mechanisms that we proposed might have been involved in this process. Data from the interviews and grey and scientific literature were triangulated to inform our findings. RESULTS: We found evidence to suggest that at least four of our proposed mechanisms have been activated by certain conditions and have contributed to the health inequalities research production process in the United Kingdom over the past 50 years. Limited evidence suggests that two new mechanisms might have potentially also been at play. CONCLUSIONS: Valuable learning can be established from this case study, which explores the United Kingdom's experience in developing a strong national health inequalities research tradition, and the potential mechanisms involved in this process. More research is needed to explore additional facilitating and inhibiting mechanisms and other factors involved in this process in this context, as well as in other settings where less health inequalities research has been produced. This type of in-depth knowledge could be used to guide the development of new health inequalities research capacity-strengthening strategies and support the development of novel approaches and solutions aiming to tackle health inequalities.

Mapping 2 Decades of Research in Health Services Research, Health Policy, and Health Economics Journals.

OBJECTIVE: To identify major research topics and exhibit trends in these topics in 15 health services research, health policy, and health economics journals over 2 decades. DATA SOURCES: The study sample of 35,159 abstracts (1999-2020) were collected from PubMed for 15 journals. STUDY DESIGN: The study used a 3-phase approach for text analyses: (1) developing the corpus of 40,618 references from PubMed (excluding 5459 of those without abstract or author information); (2) preprocessing and generating the term list using natural language processing to eliminate irrelevant textual data and identify important terms and phrases; (3) analyzing the preprocessed text data using latent semantic analysis, topic analyses, and multiple correspondence analysis. PRINCIPAL FINDINGS: Application of analyses generated 16 major research topics: (1) implementation/intervention science; (2) HIV and women's health; (3) outcomes research and quality; (4) veterans/military studies; (5) provider/primary-care interventions; (6) geriatrics and formal/informal care; (7) policies and health outcomes; (8) medication treatment/therapy; (9) patient interventions; (10) health insurance legislation and policies; (11) public health policies; (12) literature reviews; (13) cost-effectiveness and economic evaluation; (14) cancer care; (15) workforce issues; and (16) socioeconomic status and disparities. The 2-dimensional map revealed that some journals have stronger associations with specific topics. Findings were not consistent with previous studies based on user perceptions. CONCLUSION: Findings of this study can be used by the stakeholders of health services research, policy, and economics to develop future research agendas, target journal submissions, and generate interdisciplinary solutions by examining overlapping journals for particular topics.

Future directions for HIV service delivery research: Research gaps identified through WHO guideline development.

Nathan Ford and co-authors discuss the systematic identification of research gaps in improving HIV service delivery.

Emerging topics in dementia care and services.

BACKGROUND: The National Institute on Aging (NIA), in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act (NAPA), convened a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series. This review article summarizes three areas of emerging science that are likely to grow in importance given advances in measurement, technologies, and diagnostic tests that were presented at the Summit. RESULTS: Dr. Cassel discussed novel ethical considerations that have resulted from scientific advances that have enabled early diagnosis of pre-clinical dementia. Dr. Monin then summarized issues regarding emotional experiences in persons with dementia and their caregivers and care partners, including the protective impact of positive emotion and heterogeneity of differences in emotion by dementia type and individual characteristics that affect emotional processes with disease progression. Finally, Dr. Jared Benge provided an overview of the role of technologies in buffering the impact of cognitive change on real-world functioning and their utility in safety and monitoring of function and treatment adherence, facilitating communication and transportation, and increasing access to specialists in underserved or remote areas. CONCLUSIONS: National policy initiatives, supported by strong advocacy and increased federal investments, have accelerated the pace of scientific inquiry and innovation related to dementia care and services but have raised some new concerns regarding ethics, disparities, and attending to individual needs, capabilities, and preferences.

Specialty clinics for adults with Down syndrome: A clinic survey.

Specialty centers improve care for patients with Down syndrome. The cohort of adults with Down syndrome is increasing, but the capacity for specialty centers to meet their medical care needs is unknown. Electronic survey of staff of specialty clinics for adults with Down syndrome was conducted. Review of online clinic listings, and calculation of the number of adults with Down syndrome were performed. Analysis identified the percent of adults with Down syndrome who could have their medical care needs met in a current specialty clinic. Fourteen specialty clinics report providing care for 4038 adults with Down syndrome. Respondents reported gaps in care including: limitations of existing clinics, need for additional clinics, and knowledgeable health professionals in Down syndrome. Survey-respondent clinic capacity would meet needs of 3% of adults with Down syndrome. Twenty-five clinics for adults with Down syndrome were listed online with capacity to care for 6517 adults with Down syndrome meeting the needs of 5% of the population. Additional clinic capacity is needed to meet the needs of adults with Down syndrome. Survey of existing clinics provides guidance to create additional clinics, including: must-have team members, current sources of clinic financial support, and gaps in current clinical care.

Top priorities for the next decade of nursing health services research.

BACKGROUND: The U.S. health care system faces increasing pressures for reform. The importance of nurses in addressing health care delivery challenges cannot be overstated. PURPOSE: To present a Nursing Health Services Research (NHSR) agenda for the 2020s. METHOD: A meeting of an interdisciplinary group of 38 health services researchers to discuss five key challenges facing health care delivery (behavioral health, primary care, maternal/neonatal outcomes, the aging population, health care spending) and identify the most pressing and feasible research questions for NHSR in the coming decade. FINDINGS: Guided by a list of inputs affecting health care delivery (health information technology, workforce, delivery systems, payment, social determinants of health), meeting participants identified 5 to 6 research questions for each challenge. Also, eight cross-cutting themes illuminating the opportunities and barriers facing NHSR emerged. DISCUSSION: The Agenda can act as a foundation for new NHSR - which is more important than ever - in the 2020s.

Stroke Research Disparity in Southeast Asia: Socioeconomic Factors, Healthcare Delivery, and Stroke Disease Burden.

BACKGROUND: Cerebrovascular disease is the second leading cause of death worldwide and provides a heavy burden of disease in Southeast Asia (SEA). Contribution to the collective knowledge of this disease is necessary to address practice and treatment disparities. There is limited data on research productivity in the region. This study aimed to determine research productivity on stroke and other cerebral and spinal vascular diseases among the SEA countries and determine its relationship with bibliometrics, socioeconomic parameters, healthcare delivery indices, and burden of disease. METHODS: A comprehensive literature search was conducted using five major healthcare databases. We included studies published until June 2020 on cerebral and spinal vascular disease with at least one author from SEA. Country-specific socioeconomic parameters, the burden of disease, healthcare delivery indices, and the number of neurologists were collected from international databases and published data. Correlational analysis was done on bibliometric indices and collected data. RESULTS: A total of 2577 articles were included. Singapore had the most publications (n=1095, 42.5%) and citations (PlumX n=16,592, 55.2%; Scopus n=22,351, 56.7%). Gross domestic product per capita, percent gross domestic product for research and development, universal health care effective coverage index overall and for stroke treatment, and the number of neurologists had a positive correlation to bibliometric indices. CONCLUSIONS: There is a disparity in stroke research productivity among high-income and low-income countries in SEA. Priority must be given to scientific research output and its role in socioeconomic development and policy formulation.

Young people's advisory groups in health research: scoping review and mapping of practices.

BACKGROUND: Young people's advisory groups (YPAGs) for research are comprised of children or adolescents who work with researchers to shape different stages of the research process. Their involvement is expected to ensure studies better reflect the preferences and needs of targeted youth populations. However, despite their increasing use in health research, there is little systematic evidence on the methods and impacts associated with YPAGs. METHOD: To address this gap, we conducted a scoping review of YPAGs in youth-focused health studies. We systematically searched MEDLINE for empirical studies in populations between 12 years and 18 years of age published in 2019. If a potential YPAG was identified, authors were contacted for additional information about the activities and level of involvement of the YPAG. FINDINGS: Of all studies that collected primary data from persons aged 12-18 years, only 21 studies reported using youth advice during their research. This represents less than 1% of all published empirical child and adolescent studies. There was variation in the type of research activity undertaken by YPAGs and their level of involvement. Most studies involved YPAGs in co-production of research design and/or in dissemination activities. The majority of authors that responded were positive about the impact of YPAGs. INTERPRETATION: Recommendations for consistent reporting of YPAG involvement in empirical studies include reporting on the match between YPAG and study populations, frequency/format of meetings, and the nature and level of involvement.

The Changing Face of Primary Care Research and Practice-Based Research Networks (PBRNs) in Light of the COVID-19 Pandemic.

The COVID-19 outbreak is a stark reminder of the ongoing challenge of emerging and reemerging disease, the human cost of pandemics and the need for robust research.1 For primary care, the advent of COVID-19 has forced an unprecedented wave of practice change. In turn, Practice-Based Research Networks (PBRNs) must rapidly pivot to address the changing environment and the critical challenges faced by primary care. The pandemic has also impacted the ability of PBRNs to deploy traditional research methods such as face-to-face patient and provider interactions, practice facilitation, and stakeholder engagement. Providers need more relevant, patient-centered evidence and the skills to effect change. These skills will become more important than ever as primary care practices evolve in response to the current COVID-19 pandemic and the disparities in health outcomes highlighted by COVID-19 and the global Black Lives Matter social movement for justice. Throughout this issue, authors detail the work conducted by PBRNs that demonstrate many of these evolving concepts. Articles explore how PBRNs can evaluate COVID-19 in primary care, the role of PBRNs in quality improvement, stakeholder engagement, prevention and chronic care management, and patient safety in primary care.

A Practice-Based Research Network (PBRN) Roadmap for Evaluating COVID-19 in Community Health Centers: A Report From the OCHIN PBRN.

BACKGROUND: Primary care practice-based research networks (PBRNs) are critical laboratories for generating evidence from real-world settings, including studying natural experiments. Primary care's response to the novel coronavirus-19 (COVID-19) pandemic is arguably the most impactful natural experiment in our lifetime. EVALUATING THE IMPACT OF COVID-19: We briefly describe the OCHIN PBRN of community health centers (CHCs), its partnership with implementation scientists, and how we are leveraging this infrastructure and expertise to create a rapid research response evaluating how CHCs across the country responded to the COVID-19 pandemic. COVID-19 RESEARCH ROADMAP: Our research agenda focuses on asking: How has care delivery in CHCs changed due to COVID-19? What impact has COVID-19 had on the delivery of preventive services in CHCs? Which PBRN services (e.g., data surveillance, training, evidence synthesis) are most impactful to real-world practices? What decision-making strategies were used in the PBRN and its practices to make real-time changes in response to the pandemic? What critical factors in successfully and sustainably transforming primary care are illuminated by pandemic-driven changes? DISCUSSION AND CONCLUSIONS: PBRNs enable real-world evaluation of practice change and natural experiments, and thus are ideal laboratories for implementation science research. We present a real-time example of how a PBRN Implementation Laboratory activated a response to study a historic natural experiment, to help other PBRNs charting a course through this pandemic.

Evaluating the Diversity of Emergency Medicine Foundation (EMF) Grant Recipients in the Last Decade.

INTRODUCTION: To study diversity of researchers and barriers to success among Emergency Medicine Foundation (EMF) grant recipients in the last 10 years. METHODS: EMF grant awardees were approached to complete a brief survey, which included demographics, queries related to contributions to the literature, success in obtaining grants, and any perceived barriers they encountered. RESULTS: Of the 342 researchers contacted by email, a total of 147 completed the survey for a response rate of 43%. The respondents were predominately mid to late career white-male-heterosexual-Christian with an average age of 44 years (range 25-69 years of age). With regards to training and education, the majority of respondents (50%) were either Associate or Professor clinical rank (8% instructor/resident/fellow and 31% Assistant). Sixty-two percent of the respondents reported perceived barriers to career advancement since completion of residency. The largest perceived barrier to success was medical specialty (26%), followed by gender (21%) and age (16%). CONCLUSION: Our survey of EMF grant recipients in the last 10 years shows a considerable lack of diversity. The most commonly perceived barriers to career advancement by this cohort were medical specialty, gender, and age. An opportunity exists for further definition of barriers and development of mechanisms to overcome them, with a goal of increased success for those that are underrepresented.

Gender bias in therapeutic effort: from research to health care.

There are relevant dimensions from a gender perspective related to  therapeutic effort. To illustrate and discuss possible gender bias related  to medicines, through the consumption analysis in women, the  prescription of biological drugs according to sex, the potential gender  inequality in adverse drug reactions, and research with clinical trials, as  well as the decisions of international institutions in the marketing of  medicinal products. There is greater tendency to prescribe pain  relievers, regardless of pain, and drugs for low intensity depressive  symptoms in women than in men. The opposite occurs in the  prescription of statins and adequate doses, and with the greater  probability of prescribing anti-tumor necrosis factor in men than in  women with ankylosing spondylitis, despite a similar disease burden.  Adverse drug reactions are observed more frequently in women than in  men, where determinants such as body weight are having little influence on the dosage. It is currently scarcely considered in the prescription that women have differences in the activity of cytochrome CYPP450 enzymes, which can affect the liver's metabolism rate. There  are even immunological, genetic and epigenetic effects (due to heredity  and uneven gene dosing located in the X and Y chromosomes) that can  influence these differences by sex. Finally, through cases of hormonal  therapy clinical trials, a drug for women's inhibited sexual desire and a  contraceptive for men, gender bias and stereotypes are shown to  influence a potential generation of inequalities, especially in adverse  drug reactions to the detriment of women. In conclusion, health  professionals frequently attribute physical symptoms to women's  emotionality, influencing their greater prescription of symptomatic drugs. Whether the same reason influences the lower prescription of  therapeutic drugs in women than in men should be analyzed. There are  biological determinants to consider due to their influence on a greater pharmacological toxicity in women. Clinical trials should improve  according to the gender recommendations by the Food and Drugs  Administration.

Existen dimensiones relevantes desde una perspectiva de género  relacionadas con el esfuerzo terapéutico. Se pretende ilustrar y traer a  debate posibles sesgos de género relacionados con los medicamentos,  mediante el análisis del consumo en las mujeres, la prescripción de  fármacos biológicos según sexo, la potencial desigualdad de género en  las reacciones adversas a los medicamentos y la investigación con  ensayos clínicos, así como las decisiones de las instituciones  internacionales en la comercialización de medicamentos. Se observa una mayor tendencia a prescribir analgésicos, con independencia del dolor, y fármacos para síntomas depresivos de baja intensidad en mujeres que  en hombres. Lo contrario sucede en la prescripción de estatinas y dosis  adecuadas, y con la mayor probabilidad de prescripción de antifactor de  necrosis tumoral en hombres que en mujeres con espondilitis anquilosante, pese a la similar carga de la enfermedad. Las  reacciones adversas a los medicamentos se observan con más  frecuencia en mujeres que en hombres, donde determinantes como el  peso corporal están influyendo poco en la dosificación. En la actualidad  se considera escasamente en la prescripción que las mujeres presentan  diferencias en la actividad de las enzimas del citocromo CYPP450, que  puede afectar a la velocidad del metabolismo hepático. Incluso hay  efectos inmunológicos, genéticos y epigenéticos (por la herencia y la  dosificación desigual de los genes ubicados en los cromosomas X e Y)  que pueden influir en estas diferencias por sexo. Por último, mediante  los casos de ensayos clínicos de la terapia hormonal, un fármaco para el deseo sexual inhibido de las mujeres y un anticonceptivo para hombres, se muestran sesgos y estereotipos de género que influyen en una  potencial generación de desigualdades, especialmente en las reacciones  adversas a los medicamentos en perjuicio de las mujeres. Concluyendo,  los profesionales sanitarios atribuyen con frecuencia a la emocionalidad  de las mujeres lo que son síntomas físicos, influyendo en la mayor  prescripción de fármacos sintomáticos en ellas. Debe analizarse si la  misma razón influye en la menor prescripción de fármacos terapéuticos en mujeres que en hombres. Existen determinantes biológicos a considerar por su influencia en una mayor toxicidad farmacológica en las mujeres. Los ensayos clínicos deben mejorar atendiendo a las  recomendaciones de género de la Food and Drug Administration.

Rural chronic disease research patterns in the United Kingdom, United States, Canada, Australia and New Zealand: a systematic integrative review.

BACKGROUND: People living in rural and remote communities commonly experience significant health disadvantages. Geographical barriers and reduced specialist and generalist services impact access to care when compared with metropolitan context. Innovative models of care have been developed for people living with chronic diseases in rural areas with the goal of overcoming these inequities. The aim of this paper was to describe the characteristics and outcomes of studies investigating innovative models of care for people living with chronic disease in rural areas of developed countries where a metropolitan comparator was included. METHODS: An integrative systematic review was undertaken. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) method was used to understand the empirical and theoretical data on clinical outcomes for people living with chronic disease in rural compared with metropolitan contexts and their models of care in Australia, New Zealand, United States, Canada and the United Kingdom. RESULTS: Literature searching revealed 620 articles published in English between 1st January 2000 and 31st March 2019. One hundred sixty were included in the review including 68 from the United States, 59 from Australia and New Zealand (5), 21 from Canada and 11 from the United Kingdom and Ireland. 53% (84) focused on cardiovascular disease; 27% (43) diabetes mellitus; 8% (12) chronic obstructive pulmonary disease; and 13% (27) chronic kidney disease. Mortality was only reported in 10% (16) of studies and only 18% (29) reported data on Indigenous populations. CONCLUSIONS: This integrated review reveals that the published literature on common chronic health issues pertaining to rural and remote populations is largely descriptive. Only a small number of publications focus on mortality and comparative health outcomes from health care models in both urban and non-urban populations. Innovative service models and telehealth are together well represented in the published literature but data on health outcomes is relatively sparse. There is significant scope for further directly comparative studies detailing the effect of service delivery models on the health outcomes of urban and rural populations. We believe that such data would further knowledge in this field and help to break the deadly synergy between increased rurality and poorer outcomes for people with chronic disease.

Development of Conceptual Models to Guide Public Health Research, Practice, and Policy: Synthesizing Traditional and Contemporary Paradigms.

This applied paper is intended to serve as a "how to" guide for public health researchers, practitioners, and policy makers who are interested in building conceptual models to convey their ideas to diverse audiences. Conceptual models can provide a visual representation of specific research questions. They also can show key components of programs, practices, and policies designed to promote health. Conceptual models may provide improved guidance for prevention and intervention efforts if they are based on frameworks that integrate social ecological and biological influences on health and incorporate health equity and social justice principles. To enhance understanding and utilization of this guide, we provide examples of conceptual models developed by the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium. PLUS is a transdisciplinary U.S. scientific network established by the National Institutes of Health in 2015 to promote bladder health and prevent lower urinary tract symptoms, an emerging public health and prevention priority. The PLUS Research Consortium is developing conceptual models to guide its prevention research agenda. Research findings may in turn influence future public health practices and policies. This guide can assist others in framing diverse public health and prevention science issues in innovative, potentially transformative ways.