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.

Narrative Medicine: Perioperative Opportunities and Applicable Health Services Research Methods.

Narrative medicine is a humanities-based discipline that posits that attention to the patient narrative and the collaborative formation of a narrative between the patient and provider is essential for the provision of health care. In this Special Article, we review the basic theoretical constructs of the narrative medicine discipline and apply them to the perioperative setting. We frame our discussion around the 4 primary goals of the current iteration of the perioperative surgical home: enhancing patient-centered care, embracing shared decision making, optimizing health literacy, and avoiding futile surgery. We then examine the importance of incorporating narrative medicine into medical education and residency training and evaluate the literature on such narrative medicine didactics. Finally, we discuss applying health services research, specifically qualitative and mixed methods, in the rigorous evaluation of the efficacy and impact of narrative medicine clinical programs and medical education curricula.

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.

Action research as a catalyst for change: Empowered nurses facilitating patient participation in rehabilitation.

Based on action research as a practitioner-involving approach, this article communicates the findings of a two-year study on implementing patient participation as an empowering learning process for both patients and rehabilitation nurses. At a rehabilitation facility for patients who have sustained spinal cord injuries, eight nurses were engaged throughout the process aiming at improving patient participation. The current practice was explored to understand possibilities and obstacles to patient participation. Observations, interviews and logbooks, creative workshops and reflective meetings led to the development and testing of four new rehabilitation initiatives aimed at enhancing patient participation. This study suggests that skills of critical reflection from action research toolbox shed light on both the notion of patient participation and caring in nursing rehabilitation. By actively involving nurses in research, the knowledge development stems from practice and the solutions therefore became practice-oriented. In addition, the personal and professional development experienced by the involved nurses points to a secondary gain in the form of an analytical and reflective approach to complex issues in relation to patient participation, rehabilitation in general and the individual nurses' sense of professional pride.

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.