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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 data response required unprecedented cross-agency cooperation with rapid data sharing across HHS, VA, DOD, and DOE.
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HHS Protect was built quickly during COVID as a distributed secure data ecosystem with billions of data points powering real-time analysis.
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There was no existing federal infrastructure to ingest non-laboratory COVID test data, leading to building new systems 'while flying the plane'.
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Human-centered design was often missing in early pandemic tech solutions due to urgency and lack of direct user engagement.
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Crowdsourcing innovation during COVID via designathons enabled over 700 external solvers to propose solutions for data challenges.
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Long COVID presents complex challenges similar to chronic invisible illnesses like ME/CFS and Lyme disease, requiring new diagnostic approaches.
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Kristen’s personal experience with Lyme disease drives her patient-centered advocacy and innovation outside of traditional academic and medical hierarchies.
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Systemic change in entrenched fields is often more effective by creating new parallel systems rather than fighting existing ones head-on.
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Building and sustaining collaborative innovation communities is critical to overcoming bureaucracy and silos within government.
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Effective government innovation requires humility: openly admitting unknowns and inviting external help fosters better solutions.
Notable Quotes
"I got my PhD so I could get a seat at the table."
"We built the plane while we’re flying it during the COVID diagnostics data response."
"Most people don’t have the ability to recover as I did, and many treatments I used are still not widely available."
"You can’t advance a field if you don’t have a shared set of assumptions, vocabulary, and understanding."
"The first one through the wall always gets bloody when smashing silos."
"Long COVID is going to teach us a lot about invisible illnesses that have been overlooked for decades."
"We need more humility in government to say: We don’t know how to solve this, and we need your help."
"Open science and patient-driven research can break through entrenched medical orthodoxy."
"Innovation is easier by creating better systems that make old ones obsolete rather than changing what’s already baked in."
"Finding your tribe of like-minded innovators helps recharge your batteries when bureaucracy pushes back."
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