The Fragmentation of Public Health Data

  • What is the impact of opening or closing schools on the spread of the disease?
  • What factors influence how severe a case of COVID-19 is for an individual patient?
  • Are new mutations more virulent with children?
  • What is the vaccine’s impact on transmissibility?
  • Have changes in access to medical care during the pandemic resulted in higher rates of preventable disease?
  • What are the demographics of vaccine recipients?
  • Is the vaccine safe for pregnant women?
  • How high is the prevalence of long COVID-19 patients, and are there any interventions effectively treating this syndrome?

How Data Silos Emerge

Each of the government agencies, subagencies, and initiatives listed above has its own goals, operational processes, and funding, and has developed operational processes to fulfill its individual mission. This specialization creates data silos, as well as duplicative data collection when different agencies have similar questions to answer.

  • Jane’s local public health department tracks vaccination rates to understand the vaccine rollout effort in the local community, especially in high risk populations.
  • Medicare (CMS) receives the claim for the vaccine in order to process payments to providers. If Jane is dual-enrolled in Medicaid, her state Medicaid program may also receive a claim for the vaccine or related services.
  • The CDC tracks Jane’s vaccine to understand trends in vaccination and infection rates.
  • The Agency for Healthcare Quality and Research (AHRQ) tracks vaccination rates within institutional care settings in order to understand care quality.
  • State governments may have their own regulatory bodies for assisted living facilities, which track vaccination rates to understand care quality at those facilities.
  • The FDA’s Sentinel group will monitor the health outcomes of vaccinated patients to spot any early safety concerns with the new vaccines.

COVID-19 Research

  • The CDC has infection and vaccination information, showing which children were infected and which will have received the vaccine
  • The Department of Education has school registration information to understand how children have come into contact with each other and may have spread the virus to each other
  • State Medicaid programs will have claims history for some children, both at the time of infection and until the child leaves the Medicaid program
  • CMS has data on Medicaid coverage, and some all-payer claims data sets will have longitudinal claims data for children
  • Patient registries have self-reported synonyms on patients
  • The FDA has data tracking the long-term impacts of the vaccine
  • Social Security Administration (SSA) data on which individuals take long-term disability leave due to long COVID or related disorders
  • State unemployment offices have data on changes in workforce participation patterns among populations impacted by long COVID
  • Tricare, the Department of Defense, and the VA have claims data on adult populations seeking treatment to help with the impacts of long COVID

Opioid Epidemic

  • The Department of Justice and Bureau of Prisons have data on the prevalence of opioid addiction in correctional settings, as well as encounters with the justice system
  • The National Institute of Drug Abuse within the NIH has data tracking the epidemic
  • The National Center for Health Statistics (NCHS) has mortality data that can be used to understand how the epidemic has impacted mortality rates for different populations
  • State and local public health agencies have tracked the epidemic in their local communities, as well as have records on which interventions were taken at what time
  • The CDC has overdose surveillance information
  • Medicare and Medicaid claims data shows prescription patterns for prescription painkillers, as well as what other medical services people impacted by addiction have sought
  • Socioeconomic determinants of health data from numerous different agencies can illustrate how underrepresented and socioeconomically disadvantaged groups have been disproportionately impacted. For example, the Department of Labor and state unemployment boards shows how employment trends have changed for individuals and areas impacted by the epidemic.
  • Agencies such as the Department of Housing and Urban Development and the Health Resources and Services Administration can use this linked data to ensure that services such as supportive housing are being delivered to the right individuals at the right time

Cancer Research

  • CMS and the VA have claims data for individuals receiving military healthcare, Medicare, or Medicaid services. These claims show the medical services that patients received. In addition, all-payer claims databases at the state level contain claims on Medicaid and commercially insured patients
  • The FDA has clinical trial readouts and other data from clinical trials, which can be linked with claims data and other data sets to identify characteristics of patients who may be super responders or more likely to have adverse events
  • HRSA and the Indian Health Service have data on the healthcare received by and health outcomes of underrepresented groups, who are less likely to be participants in traditional clinical trials
  • NCHS has mortality data, which is crucial for understanding patient outcomes
  • The IRS, as well as the Department of Labor, Department of Education, the Department of Housing and Urban Development, and many others, have data on the socioeconomic determinants of health that may influence a patient’s likelihood to develop cancer and access the appropriate treatment
  • The Environmental Protection Agency has data on environmental hazards that may increase an individual’s chance of developing cancer

Realizing the Power of Public Health Data

The gaps in today’s system have been made clear by the COVID-19 pandemic. The inability for the CDC to link data across state public health agencies impeded the CDC’s ability to create dashboards to understand case loads across various geographies. Instead, the Johns Hopkins COVID-19 dashboard became the authoritative source for COVID-19 case numbers, as it efficiently aggregated the disparate state-level data silos.



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