Speakers
Harlan M. Krumholz, MD
Harold H. Hines Jr. Professor of Medicine, Yale University
Director, Yale New Haven Hospital Center for Outcomes Research and Evaluation
Co-Founder Hugo Health
Bala Hota, MD, MPH
Professor of Internal Medicine, Rush University
Chief Analytics Officer, Rush University Medical Center
Graham Nichol, MD, MPH
Medic One Foundation Endowed Chair for Pre-hospital Emergency Care
Professor of Emergency Medicine
University of Washington
Other Panelists:
Jacqueline Rollin, Administrative Fellow
Rush University Medical Center
Wade Schulz, MD, PhD
Assistant Professor of Laboratory Medicine
Director, CORE Center for Computational Health
Matthew J. Thompson, MB, ChB, DPhil
Helen D. Cohen Endowed Professorship in Family Medicine
Professor of Global Health and Medicine, University of Washington
Deb R. Chromik, Participant Experience
Hugo Health
Dave Hutton, Product Lead
Hugo Health
Topic
Innovative Support for Patients with SARS-COV-2 Infections Registry (INSPIRE): Participant-Centered, Rapidly-Deployed, Digitally-Enabled Research
Keywords
Coronavirus; Virus pandemic; INSPIRE Registry; COVID-19 directed research program; SARS-COV-2; Longitudinal data; Hugo Health digital research platform
Key Points
- In the face of the coronavirus pandemic, there is an urgent need for rapid knowledge generation and actionable insights. Evidence needed includes:
- The number of cases, including milder ones
- Risk factors and timing of transmission
- Severity and attack rate
- Risk factors for infection and severe outcomes, including death
- Infectiousness timing and intensity
- Patients must be considered part of the team; involved, engaged, and respected, with agency over their data.
- To better understand the experience of people with COVID-19, Rush University Medical Center and Hugo health are piloting the COVID INSPIRE registry. INSPIRE is a rapidly-deployed, digitally-enabled, participant-centered platform to collect longitudinal data and facilitate observational and experimental studies.
Discussion Themes
Even with social distancing, the coronavirus is in a rapid escalation phase; this rapid pace has our attention.
People are interested in participating in research now more than ever. The call to action is to build a human-connected system that treats patients compassionately and supports patients in real time.
Are there existing systems that could be built on or adapted for COVID-19? Are there potential for linkages to other systems?
Tags
#pctGR, @Collaboratory1, @HMKYale, @BalaHota, @GrahamNichol