SP08C - Comparing Two Geographic Sources of Patient Generated Health Data (PGHD) in a COVID-19 Registry (CARE): UK and US Symptomatology

Background: The research value of Patient Generated Health Data (PGHD) is gaining traction and knowledge of its application is growing. Evaluating the impact of geography and culture is important in extracting robust insights from PGHD. We compared self-reported symptoms in a community-based COVID-19 registry in people living in the United Kingdom (UK) and United States of America (US).

Objectives: To examine and compare self-reported symptomatology of participants with a COVID-19 test result based in the UK and US within a COVID-19 registry.

Methods: We obtained data from people in a community based COVID-19 registry known as CARE (https://www.helpstopCOVID-19.com/). Via a web platform, participants report their symptoms, test results, risk factors, and treatment of COVID-19. We used baseline data from 1,138 people in the UK and 6,397 people in the US with a COVID-19 test result and symptoms since the start of the Registry in April 2020.
The percentage of participants with each type of symptom was calculated within each geography and test result group (positive and negative).

Results: Seventeen symptoms were examined including “Cough”, “Loss of Smell”, “Loss of Taste”, and “Shortness of Breath”. In both countries COVID-19 positives had a higher prevalence of all symptoms than COVID-19 negatives. The most common symptom in both the UK and US was “Fatigue”, with positives having 1.74 and 1.71 times the prevalence as negatives in the US and UK respectively. For both geographies the greatest divergence of symptom presentation between positives versus negatives was for “Loss of Smell” (US: PD=34.7%, PR=5.84; UK: PD=23.6%, PR=8.50) and “Loss of Taste” (US: PD=32.4%, PR=5.00; UK: PD=19.2%, PR=6.33). Among COVID-19 positives, UK participants reported a lower prevalence than those from the US for all symptoms except “Trouble Waking up” (US: Prev=9.3%, PR=1.06; UK: Prev=11.2% PR=1.78). Also among COVID-19 positives, there was a wide 35.9% gap in prevalence for “Cough” (US: Prev=53.5%, PR=1.68 ; UK: Prev=17.6% PR=1.86).

Conclusions: Many more studies are being undertaken using Patient Generated Health Data (PGHD). This new source of information can be used, not only to provide context, but also to provide a more patient-centric view of healthcare. We have shown that there are significant prevalence differences across COVID-19 symptoms reported between the UK and US when using the same data collection instrument. When considering results directly collected from participants, consideration needs to be given to the geographic and cultural difference of those recording data.