By Deanna Towne
The events of 9/11 shook the world and resulted in the most expansive and significant changes to preparedness and response our country has ever experienced. The emergence of a new discipline, homeland security, drove sweeping changes that help citizens, communities, and all levels of government prepare to prevent a repeat of the tragedies of that day.
Nearly two decades later, in March 2020, the COVID-19 pandemic transformed our lives. The pandemic highlighted that, while 9/11 forced us to see new realities and ways of operating, we continued to have blind spots in the way we conduct emergency response.
My experience traversing the worlds of homeland security and health care/public health includes previously serving as deputy director of the Colorado Governor’s Office of Homeland Security and, today, as chief information officer of Contexture, the largest health information exchange (HIE) in the western region. Both roles give me unique insight into the connective fabric bridging 9/11 and the pandemic. While the scenarios are different, the findings and learnings are virtually identical, and American lives hang in the balance.
What did we learn from 9/11?
With the formation of the U.S. Department of Homeland Security (DHS) in 2002 came an intentional forcing together of traditional response organizations. DHS emerged with the daunting task of forcing federal entities to come together to prevent, prepare for, respond to, and recover from the worst events. State and local governments soon followed suit.
Federal funding to states and local governments allowed them to invest in training, exercise, planning, and equipment needs. The funding was intended to connect risk assessments and capabilities-based planning. The goal: to ensure the greatest needs were being addressed.
Post-9/11, fusion centers emerged. Their sole purpose was integrating pieces of data into actionable intelligence with the goal of sharing as broadly as legally permissible to prevent future attacks.
Before this work, silos limited effective prevention and response and increased the potential for loss of life. Over time, fusion centers expanded beyond intelligence to other areas, such as criminal activities, due to the value of inter-agency information sharing.
DHS used capability and risk-based planning to distribute significant federal funding among state, local, and national agencies; exercises challenging capacity and testing response occurred across the nation.
What do we refuse to see?
With the insight our country gained from 9/11, why did our response to COVID-19 feel so inefficient and ineffective? As COVID-19 raged through communities, the vital information needed to help respond was either unavailable or inaccessible.
To get at our country’s blind spots, we must ask four questions:
- After planning and resourcing, why couldn’t we share information with the clinical providers caring for patients, as well as the local and federal public health organizations responsible for decision making and policy guidance driving the response?
- Why was positive COVID-19 cases’ reporting so complex and inaccurate?
- Why couldn’t primary care providers view their patients’ vaccination status?
- Why didn’t we understand our medical ecosystem’s resource capacity to maximize the care provided to the most critically-ill patients?
Critical information, such as COVID-19 test results and immunization status, found itself a prisoner within state health repositories and laws prohibiting the free exchange of information. Without these restrictions, this critical information would have been accessible to physicians, in addition to local, state, and national entities.
While nurses and doctors at hospitals across the country responded valiantly, hospital leaders, health departments, and state and national entities relied on manual reporting processes. Resources needed for the response, such as hospital beds, ventilators, and even staff, were updated using manual processes, which caused delays in accurate and timely information.
The end result: Decision makers in operational and policy roles had to make decisions with lagging data that was often inaccurate and not in a standardized format.
What do we need to see?
In 2007, President George W. Bush signed Public Law 110-53, which implemented recommendations of the 9/11 Commission. In part, the law integrates the information and standardizes the format of products created by the intelligence components of DHS.
In the same way that laws related to information sharing around intelligence were modified, we must modify existing legal constraints to allow for the promotion of data exchange.
Six years passed between 9/11 and the changes to laws that allowed for greater response capabilities. Our response to COVID-19 must occur more quickly; we must be aggressive in the ways we require public health and clinical data silos to be dissolved and new, coordinated data sets and infrastructures to emerge.
Health care and public health entities need a structure similar to fusion centers. The solution our citizens need is the health data utility, a public-private resource providing a source of truth for robust clinical and non-clinical data.
Millions of dollars of federal, state, local, and private funding have been invested in the core components and competencies in existing HIE infrastructure.
Current policies that are highly protective and limit the ways information can be shared prevent the United States from conducting effective public health surveillance. In addition, we must pivot to enable data to reach the hands of those who need it. Additionally, states must commit to uniformity and coordination to ensure that future responses aren’t limited by state boundaries.
What do we need to do?
COVID-19 ignored borders. A concerted focus on patient privacy is a requirement with any new laws, but it shouldn’t be the reason we avoid needed changes.
Our country’s response to COVID-19 faced seemingly intractable challenges because of data silos. The massive focus on connecting clinical data was valuable, but this approach didn’t include the public health components and partners that were vital to our response.
We needed access to positive COVID-19 test results and immunization prevalence, in addition to real-time intelligence on resources. A health data utility offers the aggregation point for those data types, and the work we can do now is essential to any future events.
The darkness wrought by pandemics and the ill-intentions of state and non-state actors against the United States and the international community is inevitable. What gets us closer to the light is simple: Ensuring that we have the information at our fingertips to save the lives of Americans and the citizens of the world.
Deanna Towne is the chief information officer at Contexture, the umbrella organization of CORHIO, a health information exchange in Colorado, and Health Current, the Arizona health information exchange. Towne is also an advisor to the Consortium for State and Regional Interoperability, a collection of the nation’s largest and most robust nonprofit health data networks that connect over 80 million records for patients across several states and provide a wide range of services to health care organizations.