Research informatics and the COVID-19 pandemic: Challenges, innovations, lessons learned, and recommendations

Abstract

The recipients of NIH Clinical and Translational Science Awards (CTSA) have worked for over a decade to build informatics infrastructure in support of clinical and translational research. This infrastructure has proved invaluable for supporting responses to the current COVID-19 pandemic through direct patient care, clinical decision support, training researchers and practitioners, as well as public health surveillance and clinical research to levels that could not have been accomplished without the years of ground-laying work by the CTSAs. In this paper, we provide a perspective on our COVID-19 work and present relevant results of a survey of CTSA sites to broaden our understanding of the key features of their informatics programs, the informatics-related challenges they have experienced under COVID-19, and some of the innovations and solutions they developed in response to the pandemic. Responses demonstrated increased reliance by healthcare providers and researchers on access to electronic health record data, both for local needs and for sharing with other institutions and national consortia. The initial work of the CTSAs on data capture, standards, interchange and sharing policies all contributed to solutions, best illustrated by the creation, in record time, of a national clinical data repository in the National COVID Cohort Collaborative (N3C). The survey data support seven recommendations for areas of informatics and public health investment and further study to support clinical and translational research in the post-COVID-19 era.

Identifying and addressing digital health risks associated with emergency pandemic response: Problem identification, scoping review, and directions toward evidence-based evaluation

“…Governance and commissioning styles were observed as factors affecting e-health deployment during this pandemic [4] , [16] , [17] , [18] , [19] , [20] , [21] , [22] , [23] , [24] , [25] . Bayram et al [17] addressed the overreaching risk imposed through a “command-style” government approach, and that created health IT concerns, uncertainties, and future unknowns.…”

“…Another governance challenge stems from the deviation of the existing national and global digital health strategies and insufficient regulatory guidelines addressing visionary e-health development and implementation [4] , [10] , [16] , [18] , [25] , [32] , [34] , [11] , [37] , [39] , [45] , [46] , [47] , [48] , [49] , [33] , [50] , [51] , [52] . Humphreys [46] indicated the urgent need for governments to devise system thinking and coherent national strategies bounded by legislation and regulations, to ensure e-health interoperability and quality.…”

“…Standardized clinical terminologies (such as SNOMED CT [64] and ICD [65] ) and standardized data collection projects (such as [66] ) could massively increase data comparability; however, in practice, digital designs often omitted these foundations and data standards were often not utilized to their full potential [4] , [14] , [18] , [24] , [32] , [34] , [11] , [35] , [38] , [40] , [45] , [46] , [48] , [49] , [33] , [52] , [66] , [67] , [68] , [69] . The lack of integration between digital health designs also resulted in interoperability problems across primary care, and even the wider public health systems.…”

“…The above risks also resulted in widespread compromised and imperfect digital health designs, specifications, and functions [4] , [18] , [19] , [20] , [21] , [24] , [25] , [32] , [50] , [56] , [17] , [70] , [75] , [76] . For instance, automatic contact tracing apps in general attempt to keep track of both exposed and susceptible individuals in close proximity over a significant period of time.…”

“…In contrast to the systematic development approach (with a typical product lifespan of 5–10 years or longer), digital health solutions for the pandemic have been created and rolled out rapidly as urgent responses [14] , [18] , [32] , [33] , [70] , [83] , [84] , [85] , [86] – this is unusual compared to the typically deliberative e-health development process. Given the extreme pressures, many local inventions of ‘new wheel’ designs were observed.…”