Precision medicine research initiatives aim to use participants' electronic health records (EHRs) to obtain rich longitudinal data for large-scale precision medicine studies. Although EHRs vary widely in their inclusion and formatting of social and behavioral data, these data are essential to investigating genetic and social factors in health disparities. We explore possible biases in collecting, using, and interpreting EHR-based social and behavioral data in precision medicine research and their consequences for health equity.
Social and Behavioral Data in Precision Medicine"Precision medicine," "individualized medicine," and "personalized medicine" are terms used to describe the approach to health care that considers a broad range of data types to determine the unique treatment and care needs of an individual. While genomic variation has been a major focus of precision medicine, a number of programs recognize that moving toward truly personalized health care requires an understanding of biological, environmental, social, and behavioral determinants of health in addition to genomic data. [1][2][3][4][5][6][7] Social and behavioral data cover a large range of information but generally can be grouped into 4 categories: demographic, lifestyle and behavioral, psychosocial, and geographic. 8 The body of scientific research shows that inequalities in social conditions are fundamental causes of population health differences. [9][10][11] Social and behavioral data are important in demonstrating the role of social conditions in these health differences. For example, factors such as substance use, eating habits, activity levels, and risk-taking behaviors account for approximately 40% to 50% of the risk associated with preventable premature deaths in the US. 12,13 Currently, a number of large-scale cohort initiatives are collecting social and behavioral data for use in research. [2][3][4][5][6][7] Until recently, these data have come from participant surveys and other retrospective self-report methods. 2 However, many precision medicine research programs utilize electronic health record (EHR) data, as EHRs contain rich longitudinal and detailed phenotype data collected through patients' visits. 14,15 For research programs to improve health outcomes and address health disparities, social and behavioral data must be accurately collected from patients and be retrievable from