Ossom-Williamson Peace, Williams Isaac Maximilian, Kim Kukhyoung, Kindratt Tiffany B
Research Data Services, UTA Libraries, University of Texas at Arlington, Arlington, TX, United States.
Public Health Program, Department of Kinesiology, College of Nursing and Health Innovation, University of Texas at Arlington, Arlington, TX, United States.
JMIR Public Health Surveill. 2021 Apr 6;7(4):e24288. doi: 10.2196/24288.
There is an urgent need for consistent collection of demographic data on COVID-19 morbidity and mortality and sharing it with the public in open and accessible ways. Due to the lack of consistency in data reporting during the initial spread of COVID-19, the Equitable Data Collection and Disclosure on COVID-19 Act was introduced into the Congress that mandates collection and reporting of demographic COVID-19 data on testing, treatments, and deaths by age, sex, race and ethnicity, primary language, socioeconomic status, disability, and county. To our knowledge, no studies have evaluated how COVID-19 demographic data have been collected before and after the introduction of this legislation.
This study aimed to evaluate differences in reporting and public availability of COVID-19 demographic data by US state health departments and Washington, District of Columbia (DC) before (pre-Act), immediately after (post-Act), and 6 months after (6-month follow-up) the introduction of the Equitable Data Collection and Disclosure on COVID-19 Act in the Congress on April 21, 2020.
We reviewed health department websites of all 50 US states and Washington, DC (N=51). We evaluated how each state reported age, sex, and race and ethnicity data for all confirmed COVID-19 cases and deaths and how they made this data available (ie, charts and tables only or combined with dashboards and machine-actionable downloadable formats) at the three timepoints.
We found statistically significant increases in the number of health departments reporting age-specific data for COVID-19 cases (P=.045) and resulting deaths (P=.002), sex-specific data for COVID-19 deaths (P=.003), and race- and ethnicity-specific data for confirmed cases (P=.003) and deaths (P=.005) post-Act and at the 6-month follow-up (P<.05 for all). The largest increases were race and ethnicity state data for confirmed cases (pre-Act: 18/51, 35%; post-Act: 31/51, 61%; 6-month follow-up: 46/51, 90%) and deaths due to COVID-19 (pre-Act: 13/51, 25%; post-Act: 25/51, 49%; and 6-month follow-up: 39/51, 76%). Although more health departments reported race and ethnicity data based on federal requirements (P<.001), over half (29/51, 56.9%) still did not report all racial and ethnic groups as per the Office of Management and Budget guidelines (pre-Act: 5/51, 10%; post-Act: 21/51, 41%; and 6-month follow-up: 27/51, 53%). The number of health departments that made COVID-19 data available for download significantly increased from 7 to 23 (P<.001) from our initial data collection (April 2020) to the 6-month follow-up, (October 2020).
Although the increased demand for disaggregation has improved public reporting of demographics across health departments, an urgent need persists for the introduced legislation to be passed by the Congress for the US states to consistently collect and make characteristics of COVID-19 cases, deaths, and vaccinations available in order to allocate resources to mitigate disease spread.
迫切需要以一致的方式收集关于新冠病毒发病率和死亡率的人口统计数据，并以公开且易于获取的方式与公众共享。由于在新冠病毒最初传播期间数据报告缺乏一致性，《新冠病毒公平数据收集与披露法案》被提交至国会，该法案要求按年龄、性别、种族和族裔、主要语言、社会经济地位、残疾状况及所在县收集并报告有关新冠病毒检测、治疗和死亡的人口统计数据。据我们所知，尚无研究评估该立法出台前后新冠病毒人口统计数据的收集情况。
本研究旨在评估美国各州卫生部门及华盛顿特区在2020年4月21日国会引入《新冠病毒公平数据收集与披露法案》之前（法案前）、之后立即（法案后）以及6个月后（6个月随访）报告和公开新冠病毒人口统计数据的差异。
我们查阅了美国所有50个州及华盛顿特区（共51个）卫生部门的网站。我们评估了每个州如何报告所有确诊新冠病毒病例和死亡病例的年龄、性别、种族和族裔数据，以及在这三个时间点上它们如何提供这些数据（即仅以图表形式呈现，还是与仪表板及机器可读的可下载格式相结合）。
我们发现，法案后及6个月随访时，报告新冠病毒病例特定年龄数据的卫生部门数量（P = 0.045）、由此导致的死亡病例特定年龄数据的卫生部门数量（P = 0.002）、新冠病毒死亡病例特定性别数据的卫生部门数量（P = 0.003）、确诊病例特定种族和族裔数据的卫生部门数量（P = 0.003）以及死亡病例特定种族和族裔数据的卫生部门数量（P = 0.005）均有统计学意义上的显著增加（所有P值均小于0.05）。增幅最大的是确诊病例的种族和族裔州级数据（法案前：18/51，35%；法案后：31/51，61%；6个月随访：46/51，90%）以及新冠病毒死亡病例数据（法案前：13/51，25%；法案后：25/51，49%；6个月随访：39/51，76%）。尽管更多卫生部门根据联邦要求报告了种族和族裔数据（P < 0.001），但仍有超过一半（29/51，56.9%）的部门未按照管理和预算办公室的指导方针报告所有种族和族裔群体的数据（法案前：5/51，10%；法案后：21/51，41%；6个月随访：27/51，53%）。从我们最初的数据收集（2020年4月）到6个月随访（2020年10月），可下载新冠病毒数据的卫生部门数量从7个显著增加到23个（P < 0.001）。
尽管对数据细分的需求增加改善了各卫生部门对人口统计数据的公开报告，但仍迫切需要国会通过该引入的立法，以便美国各州能够持续收集并公开新冠病毒病例、死亡病例及疫苗接种的特征信息，从而分配资源以减缓疾病传播。
