Some participants viewed the simultaneous use of their EHRs for both health care and research as potentially beneficial, whereas others expressed concerns about mixing their health care with research.Ĭonclusions: This exploratory study indicates that pregnant and breastfeeding women may be willing to release EHR data to researchers if researchers adequately address their concerns regarding the study design, communication, and data management. The potential release of sensitive or stigmatizing information, such as mental or sexual health history, was considered in the decisions to release EHRs. Participants’ concerns about sharing EHRs for research purposes emerged in 3 thematic domains: privacy and confidentiality, transparency by the research team, and surrogate decision-making on behalf of infants. Less than half of the participants (12/29, 41%) were willing to make EHR data available to researchers for the duration of a study or longer. Nearly all participants (27/29, 93%) were familiar with EHRs and had experience accessing an EHR patient portal. More than half of the sample had at least an associate degree or higher. Results: Participants included 29 pregnant or breastfeeding women aged between 22 and 39 years. Transcripts were organized and coded using the NVivo 12 software (QSR International), and coded data were thematically analyzed using constant comparison. The interviews were transcribed verbatim. Participants were asked about their familiarity with EHRs and EHR patient portals, their comfort with releasing maternal and infant EHR data to researchers, the length of time of the data release, and whether individual research test results should be included in the EHR. Methods: We conducted semistructured interviews with pregnant or breastfeeding women from Alachua County, Florida. Objective: The aim of this study is to explore the perspectives of pregnant and breastfeeding women on releasing their own and their infants’ EHR data for longitudinal research to identify factors affecting their willingness to participate in research. Existing studies on the perspectives of pregnant and breastfeeding women on EHR use have been limited to the use of EHRs to engage in health care rather than to participate in research. Asian/Pacific Island Nursing Journal 11 articlesĮmail: 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.JMIR Bioinformatics and Biotechnology 35 articles.JMIR Biomedical Engineering 69 articles.Journal of Participatory Medicine 80 articles. JMIR Perioperative Medicine 91 articles.JMIR Rehabilitation and Assistive Technologies 206 articles.JMIR Pediatrics and Parenting 287 articles.Interactive Journal of Medical Research 315 articles.JMIR Public Health and Surveillance 1176 articles.Journal of Medical Internet Research 7628 articles.
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