Data Equity: The Foundation of Out-of-Hospital Cardiac Arrest Quality Improvement
2022; Lippincott Williams & Wilkins; Volume: 16; Issue: 2 Linguagem: Inglês
10.1161/circoutcomes.122.009603
ISSN1941-7705
AutoresMarina Del Rios, Brahmajee K. Nallamothu, Paul S. Chan,
Tópico(s)Disaster Response and Management
ResumoHomeCirculation: Cardiovascular Quality and OutcomesVol. 16, No. 2Data Equity: The Foundation of Out-of-Hospital Cardiac Arrest Quality Improvement Free AccessEditorialPDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissions ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toFree AccessEditorialPDF/EPUBData Equity: The Foundation of Out-of-Hospital Cardiac Arrest Quality Improvement Marina Del Rios, Brahmajee K. Nallamothu and Paul S. Chan Marina Del RiosMarina Del Rios Correspondence to: Marina Del Rios, MD, MS, University of Iowa, IA, Email E-mail Address: [email protected] https://orcid.org/0000-0002-7461-4836 University of Iowa, IA (M.D.R.). , Brahmajee K. NallamothuBrahmajee K. Nallamothu https://orcid.org/0000-0003-4331-6649 University of Michigan, Ann Arbor, MI (B.K.N.). and Paul S. ChanPaul S. Chan https://orcid.org/0000-0002-5185-3367 Saint Luke's Mid America Heart Institute and the University of Missouri-Kansas City, MO (P.S.C.). Originally published12 Dec 2022https://doi.org/10.1161/CIRCOUTCOMES.122.009603Circulation: Cardiovascular Quality and Outcomes. 2023;16This article is a commentary on the followingEfforts to Improve Survival Outcomes of Out-of-Hospital Cardiac Arrest in China: BASIC-OHCAAssociation Between Income and Risk of Out-of-Hospital Cardiac Arrest: A Retrospective Cohort StudyOther version(s) of this articleYou are viewing the most recent version of this article. Previous versions: December 12, 2022: Ahead of Print The first Utstein reporting guidelines for out-of-hospital cardiac arrest (OHCA) were published in 1990 with the goal of standardizing definitions and data items in order to facilitate comparison of cardiac arrest epidemiology and outcomes between emergency medical systems.1 Since these guidelines were first introduced, an increasing number of national and regional registries have been established worldwide.2 Recognized as a critical element of a high-quality resuscitation system, OHCA data reporting is an essential first step to guide quality improvement initiatives, facilitate identification of knowledge gaps, and inform research priorities.3 This month's issue of Circulation: Cardiovascular Quality and Outcomes features 2 articles that reaffirm the power of data access and the importance of cardiac arrest registries. One article by Xie and colleagues4 describes the design, implementation, and significance of the first nationwide registry of OHCA in China. The second article by van Nieuwenhuizen and colleagues5 describes how linkage of a robust cardiac arrest registry with other health care datasets can be used to prevent OHCA.See Articles by Xie et al and van Nieuwenhuizen et alThe Baseline Investigation of Out-of-Hospital Cardiac Arrest (BASIC-OHCA registry) was first established in August of 2019 and is the first, systematic OHCA registry in China.4 Previous reports from China included only data from individual hospitals or cities. One study reported a survival rate for OHCA of 1.3% in Beijing, but little is known about OHCA incidence and survival in other regions of China, a country of 1.4 billion people.6 In this context, the findings from this initial report from the BASIC-OHCA registry are notable as a first look at the baseline characteristics of OHCA response in China, including incidence, demographics, processes of care, and outcomes. Included are over 90 000 patients and 32 EMS agencies, a substantial portion of which are from rural provinces—areas from which knowledge about OHCA data are currently absent. Their adoption of the Utstein template allows for benchmarking against other countries and inform where resources need to be directed for preparedness across the chain of survival. Bystander cardiopulmonary resuscitation is rare and automated external defibrillators are only available in major cities making China's OHCA system of care heavily dependent on EMS actions. Most OHCA occur in the home and a shockable rhythm is present in only 5%. Less than 1% survive to hospital discharge with favorable neurological outcomes.The Chinese experience is compared to that of the Netherlands5 with its long history of measurement, benchmarking, and interventions in OHCA treatment and outcomes. The Amsterdam Resuscitation Study (ARREST) registry was first established 14 years before BASIC-OHCA in June 2005.7 This prospective observational registry of all OHCAs in North Holland differs from BASIC-OHCA as it includes more detail than the Utstein data elements. It includes genetic, clinical, pharmacological, and environmental data obtained from general practitioner, public pharmacy, and public registries.8 Temporal trends demonstrate significant increases in OHCA survival with good neurologic outcome in ARREST (rate of survival with favorable neurologic outcome from 16.2% in 2006 through 19.7% in 2012) in association with increased bystander cardiopulmonary resuscitation rates and automated external defibrillator use.9While continuous quality improvement informed by registry data has led to improved OHCA survival outcomes in the Netherlands,10 case fatality of OHCA remains high and disparities persist. Given the significant public health burden of OHCA and the unequal incidence burden and survival, defining OHCA vulnerability at the individual as well as population level is critical to take the appropriate measures to decrease incidence of OHCA, improve community preparedness and response, and, subsequently, save more lives. The study by Van Nieuwenhuizen et al5 demonstrates how a robust data infrastructure offers the possibility of saving lives beyond identifying weaknesses within the OHCA system of care. Although OHCA is thought of as a sudden event, many patients have symptoms or have sought medical attention prior to their arrest. Improved surveillance may allow prevention. Socioeconomic inequities mediate health inequities and comorbidity burden associated with risk of having an OHCA. By linking longitudinal OHCA surveillance data from the ARREST registry with other registries, in this case with demographic and income datasets, it is possible to identify individuals at higher risk of an OHCA. Understanding these associations can help direct public health interventions to prevent OHCA and help inform health care providers to discern who may need additional investment in risk factor monitoring.The striking differences in reported OHCA survival and in the availability of rich datasets for study in China as compared with the Netherlands speaks to the importance of bringing increased transparency, accountability, and resource allocation to data acquisition. The Pan Asian Resuscitation Outcomes Study Clinical Research Network provides another snapshot of the inequities in OHCA reporting and resuscitation outcomes.11 A study of the first 2.5 years of the Pan Asian Resuscitation Outcomes Study (established in 2010) reported bystander cardiopulmonary resuscitation rates ranged from 10.5% through 40.9%, with only a very small proportion receiving defibrillation (<1%). Survival to discharge rates in the participating countries ranged from 0.5% through 8.5%. Not surprisingly, countries with registries prior to the Pan Asian Resuscitation Outcomes Study (Japan, South Korea, and Taiwan) had more favorable bystander cardiopulmonary resuscitation and survival numbers than countries without preexisting registries (all others). Another study of 16 national and regional OHCA registries across the world conducted by the International Liaison Committee on Resuscitation Research and Registries Working Group also highlights the stark inequities in data reporting and access.2 Wide variation in survival outcomes and in core data elements were found across nations and regions, suggesting opportunities for improvements in data definitions and reporting systems. Importantly, most of the registries participating in the International Liaison Committee on Resuscitation survey were from high-income nations/regions raising the question of how applicable the results would be to low-income nations/regions. Data-driven investments in EMS infrastructure, health care systems, and community awareness play a major role in achieving high OHCA survival. Yet, wide variations in reporting and outcomes are likely to persist given the large imbalances in resource allocation for OHCA and more broadly public health surveillance and data equity.Data equity refers to the consideration, through an equity lens, of the ways in which data is collected, analyzed, interpreted, and distributed.12 It encourages inspection into potential bias of research instruments, publication's role in the reinforcement of stereotypes, and marginalized communities' ability to control and access their own data. The current model of OHCA reporting reinforces data inequities and, subsequently, persistent inequities in OHCA outcomes. A close look at the funding sources for BASIC-OHCA versus ARREST provides insight as to how data inequities reinforce health inequities. BASIC-OHCA is funded largely by government and university funding.4 Meanwhile, ARREST has a diversity of funding sources including public, philanthropy, and industry funding.13 Some may argue that China is an increasingly wealthy and well-resourced country that is allowing for investments in data around OHCA. It also has numerous public health structures in place that allow for centralized control of resources. Advances in the BASIC-OHCA registry are certainly a way forward for China. Data reporting from other parts of the world that are less well-off than China, the Netherlands, and wealthy nations will raise even more challenges in funding sources.To enable more comprehensive and inclusive reporting of systems of care and outcomes following OHCA throughout the world, a redistribution or sharing of resources is necessary.12 Assistance can come in the form of shared technology and personnel, monetary assistance, and allyship to hold industry and philanthropy accountable. Given the significant manpower and financial requirements of supporting a registry, OHCA incidence and outcomes in resource poor nations will remain largely unmeasured or unconnected from quality improvement efforts without assistance and advocacy from more affluent nations. Data equity can lead to identification of gaps and investments in infrastructure and EMS systems in low- and middle-income nations. We call on the resuscitation community to stand up for the principles of data equity and propose creative solutions to develop more inclusive systems of data reporting and access as a means to improving OHCA survival and achieving equity in OHCA outcomes.Article InformationSources of FundingNone.Disclosures Disclosures provided by Dr Nallamothu and Dr Chan in compliance with American Heart Association's annual Journal Editor Disclosure Questionnaire are available at https://www.ahajournals.org/pb-assets/policies/COI_03_2022-1646773084033.pdf. Dr Del Rios receives grant funding from National Institutes of Health. The other authors report no conflicts.FootnotesThe opinions expressed in this article are not necessarily those of the American Heart Association.For Sources of Funding and Disclosures, see page 114.Correspondence to: Marina Del Rios, MD, MS, University of Iowa, IA, Email marina-delrios@uiowa.eduReferences1. Cummins RO, Chamberlain DA, Abramson NS, Allen M, Baskett PJ, Becker L, Bossaert L, Delooz HH, Dick WF, Eisenberg MS. Recommended guidelines for uniform reporting of data from out-of-hospital cardiac arrest: the Utstein style. A statement for health professionals from a task force of the American Heart Association, the European Resuscitation Council, the Heart and Stroke Foundation of Canada, and the Australian Resuscitation Council.Circulation. 1991; 84:960–975. doi: 10.1161/01.cir.84.2.960LinkGoogle Scholar2. 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Outcomes for out-of-hospital cardiac arrests across 7 countries in Asia: the pan Asian Resuscitation Outcomes Study (PAROS).Resuscitation. 2015; 96:100–108. doi: 10.1016/j.resuscitation.2015.07.026CrossrefMedlineGoogle Scholar12. O'Neil S, Taylor S, Sivasankaran A. Data Equity to advance health and health equity in low- and middle-income countries: a scoping review.Digit Health. 2021; 7:20552076211061922. doi: 10.1177/20552076211061922CrossrefGoogle Scholar13. Tan H, Blom M. ARREST registry: Amsterdam resuscitation studies.Accessed November 28, 2022. https://www.isrctn.com/ISRCTN15255286Google Scholar Previous Back to top Next FiguresReferencesRelatedDetailsRelated articlesEfforts to Improve Survival Outcomes of Out-of-Hospital Cardiac Arrest in China: BASIC-OHCAXi Xie, et al. Circulation: Cardiovascular Quality and Outcomes. 2023;16Association Between Income and Risk of Out-of-Hospital Cardiac Arrest: A Retrospective Cohort StudyBenjamin P. van Nieuwenhuizen, et al. Circulation: Cardiovascular Quality and Outcomes. 2023;16 February 2023Vol 16, Issue 2 Advertisement Article InformationMetrics © 2022 American Heart Association, Inc.https://doi.org/10.1161/CIRCOUTCOMES.122.009603PMID: 36503277 Originally publishedDecember 12, 2022 KeywordsEditorialcitiesincidenceout-of-hospital cardiac arrestregistriessurvival ratePDF download Advertisement
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