Active Use of Electronic Health Records (EHRs) and Personal Health Records (PHRs) for Epidemiologic Research: Sample Representativeness and Nonresponse Bias in a Study of Women During Pregnancy

Abstract

Introduction:With the growing use of electronic medical records, electronic health records (EHRs), and personal health records (PHRs) for health care delivery, new opportunities have arisen for population health researchers. Our objective was to characterize PHR users and examine sample representativeness and nonresponse bias in a study of pregnant women recruited via the PHR.Design:Demographic characteristics were examined for PHR users and nonusers. Enrolled study participants (responders, n=187) were then compared with nonresponders and a representative sample of the target population.Results:PHR patient portal users (34 percent of eligible persons) were older and more likely to be White, have private health insurance, and develop gestational diabetes than nonusers. Of eligible persons (all PHR users), 11 percent (187/1,713) completed a self-administered PHR based questionnaire. Participants in the research study were more likely to be non-Hispanic White (90 percent versus 79 percent) and married (85 percent versus 77 percent), and were less likely to be Non-Hispanic Black (3 percent versus 12 percent) or Hispanic (3 percent versus 6 percent). Responders and nonresponders were similar regarding age distribution, employment status, and health insurance status. Demographic characteristics were similar between responders and nonresponders.Discussion:Demographic characteristics of the study population differed from the general population, consistent with patterns seen in traditional population-based studies. The PHR may be an efficient method for recruiting and conducting observational research with additional benefits of efficiency and cost-cost-effectiveness.

Recruiting for a pragmatic trial using the electronic health record and patient portal: successes and lessons learned

“…Prior research has suggested that patient portal users are not demographically representative of the patient population as a whole (reinforced by Figures 2 and 3), in addition to portals presenting challenges to low socioeconomic status (SES) and low literacy patients. [13][14][15] These factors likely also affect the makeup of the populations that receive recruitment messages through the patient portal and ultimately make the choice to enroll. Though we were not able to determine SES or literacy for the patients contacted for ADAPTABLE, Figures 2 and 3 indeed indicate that different methods of contact reach different populations.…”

Pregnancy course, infant outcomes, rehospitalization, and mortality among women with intellectual disability

“…It is also a limitation that some results (e.g., BMI, weight gain, breast feeding) are based on variables available only in recent years of data and may not be relevant to earlier times. However, the use of these data allowed a population-based perspective and included all women with deliveries, regardless of where delivery occurred, race/ethnicity, or other factors often associated with lack of participation in research studies (43).…”

A survey of practices for the use of electronic health records to support research recruitment

“…Even so, only a minority of institutions responding to our survey had implemented the use of EHR patient portals for research purposes. In addition, there continue to be disparities in individuals' access to and use of EHRs and PHRs, particularly among certain socio-demographic groups [13]; however, this is improving and there is some evidence that underrepresented groups are just as amenable to recruitment via such approaches [14].…”