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"Let’s Talk About Data and Crisis”: Public Digital Service Delivery = Open Data + Human Centered Design
Summary
The public relies on government services during critical and meaningful events throughout their lives—from birth, travel, education, and healthcare to retirement and death. The global COVID-19 pandemic inevitably impacted these critical functions of our lives, and underscored the need for increased government technology and communications. Digital platforms have proved to be key and effective agents in delivering critical and urgent information or services in the event of a public crisis, as opposed to physical infrastructure (imagine Dr. Fauci posting a paper bulletin to convey the latest national statistics for COVID-related data!). On the other hand, both private and public entities rallied around open data initiatives to inform critical policy decisions, share information, and work together to develop critical digital infrastructure that provided testing sites, kits, and results (e.g., call centers vs websites; office visits vs telemedicine). To fully scale solutions such as these, we must first consider how we: Use data to inform our technology in solving problems; Provide assistance in a timely and approachable manner for end users; and How we use data to invest in critical features and to quickly deliver information.
Key Insights
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COVID-19 response at HHS involved rapid data sharing across agencies, enabled by emergency MOUs, that would typically take years.
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The vast majority of COVID tests were non-laboratory based, requiring novel federal infrastructure to ingest and harmonize diverse data sources.
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Leadership vacuum in early 2020 at HHS complicated the crisis response but led to agile cross-agency collaboration.
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Human-centered design and user research were largely missing in the initial COVID response, despite their critical importance.
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Long COVID and other complex post-infection syndromes highlight gaps in medical diagnostics and the need to validate patient experiences.
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Kristen's personal struggle with late-stage Lyme disease fuels her advocacy for open, patient-driven research and diagnostic innovation.
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Innovating outside conventional academic and government structures can create new pathways to system change.
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Crowdsourcing solutions during COVID with designathons engaged hundreds of innovators and produced multiple actionable projects.
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Smashing silos in government is a nonlinear, challenging process that requires patience, persistence, and a support community.
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The conference and community emphasize global diversity, inclusion, and cross-government levels to foster civic design innovation.
Notable Quotes
"I got my PhD so I could get a seat at the table."
"We had to build the plane while we were flying it."
"Data is only as good as insights that come out of it and action."
"If you can’t measure it, it doesn’t exist is hubris in medicine and science."
"Long COVID will teach us so much about invisible illnesses that are common but overlooked."
"We put out a global challenge and engaged over 700 solvers and got 30 projects that blew us away."
"It’s easier to create a better system that makes your old system obsolete than to change what is baked in."
"When you’re smashing silos, the first wall you try to break through always gets bloody."
"Innovators need a tribe to recharge their batteries because you get no from every direction."
"The peer review process is slow and gatekeeps change, so innovating from the margins is strategic."
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