Although big data is making a revolution in health care, its potential has been limited by the underrepresentation of vulnerable populations, including marginalized racial and socioeconomic groups, who are at greater risk of poor health outcomes. To close this knowledge gap and better understand health imbalances, biomedical engineer Ritika Chaturvedi spearheaded the creation of American Life in Realtime (ALiR), the first comprehensive digital health dataset to represent all demographics in the United States. .
“Leaving large portions population these studies inevitably lead to disparities because different populations exhibit different behaviors and experience different social determinants of health, “said Chaturvedi, a researcher at the USC Schaeffer Center for Health Policy and Economics. health care that meets individual needs, rather than relying on our current one-size-fits-all approach. ”
To date, more than 1,000 people have been enrolled in ALiR, conducted by the Schaefer Center in partnership with Understanding America at the USC Dornsife Center for Economic and Social Research (CESR) and Evidation Health. It is supported through a four-year grant of $ 1.2 million from the National Institutes of Health.
A representative national cohort has been created within the project. More than half of the cohort are from historically marginalized communities, including 1 in 4 Latinos, 13% blacks, 9% Asians, and 4% Native Americans, Alaska Natives, Hawaiians, or Pacific Islanders. Sixty-seven percent of the cohort did not graduate from college, and 57% have at least one chronic illness.
Providing health trackers helps to overcome bias in digital health data
Each ALiR participant received a Fitbit for gathering information physical activity, sleep and pulse. The research team also created an app that surveys participants and awards scores based on their level of participation and response.
Most digital health research uses “bring your own device” designs. The provision of Fitbits overcomes biases that arise only from the accumulation of health data from people who already possess devices to monitor physical fitness, which has led to the systematic neglect of important segments of the population.
“We already give participants in the” Understanding of America “study tablet devices with Internet access when they don’t already have access. to understand Art digital divide“- says Arie Captain, CEO of CESR.
“By using a representative sample and incorporating validated digital health tools, the project provides an important opportunity to identify differences in key health outcomes and indicators, especially in populations that are vulnerable to negative health outcomes but currently underrepresented in this type of research.” says Luca Foscini, co-founder and chief scientist according to Evidation Health.
Analysis of sleep trends sheds light on social inequality
Chaturvedi presented the ALiR project at the World Sleep Congress in 2022 in Rome. The conference was attended by more than 2,300 people, including medical researchers from nearly 60 countries. The setting was appropriate because most sleep activities are designed based on population averages that do not take into account complex and interrelated factors such as economic inequality, access to health care, systemic racism, and lifelong stress.
However, “these social and structural determinants account for 60–80% of the changeable risk factors that contribute to health imbalancesincluding sleep, ”says Wendy Troxel, a senior behavioral and social science specialist at RAND, who is a co-researcher on a project working with Chaturvedi.
Inclusion of future research
Eventually ALiR will become publicly available to benefit health research everywhere. “This infrastructure can be used to study a variety of public health issues,” Chaturvedi said. In addition, ALiR can help improve remote patient monitoring, expand participation in medical records, and improve prognostic medicine techniques.
“The creation of the American panel” Real Time Life “ensures that underrepresented groups will be fully represented as digital health research develops,” adds Chaturvedi.
University of Southern California
Citation: The Healthcare Dataset aims to represent all demographic groups (2022, May 25), received May 25, 2022 from https://medicalxpress.com/news/2022-05-health-dataset-demographic-groups.html
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