Data Collection and Use During COVID-19

The United States—as of June 2020—has more reported cases of COVID-19 than any other country in the world, despite having many of the same resources as other countries that curbed the pandemic more successfully. COVID-19 has highlighted the cracks in the United States’ health-care system; specifically, it has exposed inefficiencies in the mechanisms, like data collection, through which care informs medical research.

Reflecting a widespread desire to collaborate in the fight against the virus, big tech and public-private partnerships have undertaken many initiatives to help “flatten the curve” through patient data collection. However, efforts to report data remain uncoordinated, exposing a lack of data interoperability, an inability to aggregate data from disparate sources, difficulties with analyzing data in real time, and a crisis of consumer trust in big tech. 

This paper explores these challenges in relation to medical research and discusses how the COVID-19 pandemic has highlighted their importance. It also provides recommendations across several key thematic areas, including promoting the interoperability and integration of data, ensuring data privacy and protections, and advancing remote patient monitoring and telehealth.

Updated/Published September 15, 2020