JMIR Publications

ABSTRACT

Background:

Electronic health records (EHRs) hold great potential for longitudinal mother-baby studies, ranging from assessing study feasibility to facilitating patient recruitment to streamlining study visits and data collection. Existing studies focused on the perspectives of pregnant and breastfeeding women regarding EHR use have been limited to understanding the use of EHR to engage in healthcare rather than to participate in research.

Objective:

This study explored the perspectives of pregnant or breastfeeding women on the release of their and their infant’s EHR data for longitudinal research studies, in particular, investigating the factors that affect willingness to participate in research.

Methods:

Twenty-nine pregnant and breastfeeding mothers from Alachua County, Florida completed in-depth, semi-structured interviews. Women were asked about their familiarity with EHRs, their comfort releasing maternal and child EHR data to researchers, the length of time of data release, and whether research test results should be included in the EHR. Interviews were transcribed verbatim. Transcripts were organized and coded using QSR International’s NVivo 12 software, and coded data was thematically analyzed using constant comparison. Descriptive statistics were calculated in R.

Results:

Women were between the ages of 20 and 40 years with the majority holding an associate’s degree or higher. Participants expressed overall willingness to release their EHR to researchers, although they indicated some areas of concern about doing so in three thematic domains: (1) privacy and confidentiality; (2) transparency by the research team; and (3) surrogate decision making on behalf of infants. In particular, the possibility of revealing stigmatizing information, such as mental health or sexual history, was a point of concern in the decision to release EHRs. A little under half (41%) of participants were willing to make their EHR data available to researchers for the entire duration of a study or longer. Although participants also discussed the possibility of using the EHR to simultaneously serve as a shared platform to enable both engagement in their healthcare as well as research, some participants also expressed concerns about mixing their healthcare with research.

Conclusions:

Pregnant and breastfeeding women in our sample were overwhelmingly willing to release EHR data to researchers, as long as three primary areas of concern were addressed. Pregnant and breastfeeding women should be included in EHR-based research as long as researchers are prepared to address their concerns.