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Recommendations for improving national clinical datasets for health equity research.

ABSTRACT: Health and healthcare disparities continue despite clinical, research, and policy efforts. Large clinical datasets may not contain data relevant to healthcare disparities and leveraging these for research may be crucial to improve health equity. The Health Disparities Collaborative Research Group was commissioned by the Patient-Centered Outcomes Research Institute to examine the data science needs for quality and complete data and provide recommendations for improving data science around health disparities. The group convened content experts, researchers, clinicians, and patients to produce these recommendations and suggestions for implementation. Our desire was to produce recommendations to improve the usability of healthcare datasets for health equity research. The recommendations are summarized in 3 primary domains: patient voice, accurate variables, and data linkage. The implementation of these recommendations in national datasets has the potential to accelerate health disparities research and promote efforts to reduce health inequities.

SUBMITTER: Block RG

PROVIDER: S-EPMC7671626 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Recommendations for improving national clinical datasets for health equity research.

Block Rebecca G RG Puro Jon J Cottrell Erika E Lunn Mitchell R MR Dunne M J MJ Quiñones Ana R AR Chung Bowen B Pinnock William W Reid Georgia M GM Heintzman John J

Journal of the American Medical Informatics Association : JAMIA 20201101 11

Health and healthcare disparities continue despite clinical, research, and policy efforts. Large clinical datasets may not contain data relevant to healthcare disparities and leveraging these for research may be crucial to improve health equity. The Health Disparities Collaborative Research Group was commissioned by the Patient-Centered Outcomes Research Institute to examine the data science needs for quality and complete data and provide recommendations for improving data science around health ...[more]

PMID: 32885240

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Project description:ObjectiveTo describe health equity research priorities for health care delivery systems and delineate a research and action agenda that generates evidence-based solutions to persistent racial and ethnic inequities in health outcomes.Data sources and study settingThis project was conducted as a component of the Agency for Healthcare Research and Quality's (AHRQ) stakeholder engaged process to develop an Equity Agenda and Action Plan to guide priority setting to advance health equity. Recommendations were developed and refined based on expert input, evidence review, and stakeholder engagement. Participating stakeholders included experts from academia, health care organizations, industry, and government.Study designExpert group consensus, informed by stakeholder engagement and targeted evidence review.Data collection/extraction methodsPriority themes were derived iteratively through (1) brainstorming and idea reduction, (2) targeted evidence review of candidate themes, (3) determination of preliminary themes; (4) input on preliminary themes from stakeholders attending AHRQ's 2022 Health Equity Summit; and (5) and refinement of themes based on that input. The final set of research and action recommendations was determined by authors' consensus.Principal findingsHealth care delivery systems have contributed to racial and ethnic disparities in health care. High quality research is needed to inform health care delivery systems approaches to undo systemic barriers and inequities. We identified six priority themes for research; (1) institutional leadership, culture, and workforce; (2) data-driven, culturally tailored care; (3) health equity targeted performance incentives; (4) health equity-informed approaches to health system consolidation and access; (5) whole person care; (6) and whole community investment. We also suggest cross-cutting themes regarding research workforce and research timelines.ConclusionsAs the nation's primary health services research agency, AHRQ can advance equitable delivery of health care by funding research and disseminating evidence to help transform the organization and delivery of health care.

Project description:BackgroundAvoidable disparities in health outcomes persist in Canada despite substantial investments in a publicly funded health care system that includes preventive services. Our objective was to provide preventive care recommendations that promote health equity by prioritizing effective interventions for people experiencing disadvantages.MethodsThe guideline was developed by a primary care provider-patient panel, with input from a patient-partner panel with diverse lived experiences. After selecting priority topics, we searched for systematic reviews and recent randomized controlled trials of screening and other relevant studies of screening accuracy and management efficacy. We used the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach to develop recommendations and followed the Appraisal of Guidelines for Research and Evaluation (AGREE II) reporting guidance. We managed competing interests using the Guideline International Network principles. The recommendations were externally reviewed by content experts and circulated for endorsement by national stakeholders.RecommendationsWe developed 15 screening and other preventive care recommendations and 1 policy recommendation on improving access to primary care. We recommend prioritized outreach for colorectal cancer screening starting at age 45 years and for cardiovascular disease risk assessment, to help address inequities and promote health. Specific interventions that should be rolled out in ways that address inequities include human papillomavirus (HPV) self-testing, HIV self-testing and interferon-γ release assays for tuberculosis infection. Screening for depression, substance use, intimate partner violence and poverty should help connect people experiencing specific disadvantages with proven interventions. We recommend automatic connection to primary care for people experiencing disadvantages.InterpretationProven preventive care interventions can address health inequities if people experiencing disadvantages are prioritized. Clinicians, health care organizations and governments should take evidence-based actions and track progress in promoting health equity across Canada.

Dataset Information

Recommendations for improving national clinical datasets for health equity research.

Publications

Recommendations for improving national clinical datasets for health equity research.

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