@article{911a6c5a0b9e4667a92ffe78033137cf,
title = "Collection of pregnancy outcome records following infertility—challenges and possible solutions",
abstract = "Purpose: The aim of this study is to report challenges encountered when conducting inter-institutional data collection of obstetric (prenatal and postpartum) and delivery outcomes for research purposes and to propose solutions for enhanced efficiency. Methods: Data were collected from women who consented to collection of obstetric and delivery records for an observational study of pregnancy and delivery outcomes following infertility treatment. We analyzed key issues relevant to improving efficiency of obstetric and delivery data collection via quantification of effort (such as number of calls and faxes) required to obtain records from different types of obstetric clinics and hospitals before and after utilization of a revised authorization. Results: At time of analysis, records were successfully collected from 320 of the 451 participants who had delivered. The 320 participants received obstetric care at 63 institutions and delivered at 27 hospitals, with 168 (52.5 %) delivering at institutions other than home facility. At time of consent (8 weeks gestation), 155 of 320 (48.5 %) correctly predicted where they would receive obstetric care and 176 (55 %) where they would delivery. Most facilities (nearly 90 %) rejected our original authorization, but most (90 %) accepted the revised authorization described in this manuscript. Conclusions: Collecting records is time-consuming but important as over 50 % of our participants received care outside of the home facility. To efficiently collect outside records, we recommend that researchers interested in maternal and neonatal outcomes consider the guidelines outlined in this manuscript. This report also provides strong evidence of the need to develop data sharing through electronic health records for research purposes.",
keywords = "Data sharing, Health information exchange, Infertility, Pregnancy outcome",
author = "Floyd, {Erin G.} and {von Versen-H{\"o}ynck}, Frauke and Jing Liu and Chi, {Yueh Yun} and Fleischmann, {Raquel R.} and Baker, {Valerie L.}",
note = "Funding Information: The authors would like to thank all participants, prenatal/postpartum facilities, and delivery hospitals that enabled the collection of these data. This study was funded by Award Number P01 HD 065647-01A1 from the National Institute of Child Health and Human Development. Frauke von Versen-Hoeynck was funded by the German Research Foundation (VE490/8-1). Funding Information: Data for this manuscript were collected while conducting “Pregnancy Outcomes Following Infertility” (POFI), a longitudinal study funded by the National Institute of Health (NIH). All participants in POFI are female partners of couples experiencing infertility and receiving evaluation and treatment at the home academic institution{\textquoteright}s fertility and reproductive health practice. POFI{\textquoteright}s hypothesis requires the collection of data from prenatal, delivery, and postpartum care records. A research coordinator enrolled women in the fertility clinic at 8 weeks gestation following confirmation of pregnancy viability. At the time of consent to participate in POFI, participants signed a study-specific authorization form to be used to request their prenatal, delivery, and postpartum data, and provided the name of the obstetric practice and hospital where they planned to receive care. Included in the analysis are data of participants who signed consent at time of study initiation on October 6, 2011 until May 21, 2014, and whose prenatal, delivery, and postpartum records were successfully collected by the time that data analysis for this manuscript was initiated on June 12, 2015. Participants whose records we had not successfully collected by June 12, 2015, pregnancies that resulted in miscarriages, and participants withdrawn from the study were excluded. Our team defined miscarriage as a spontaneous loss of the fetus before 20 weeks of gestation. Miscarriage pregnancies were excluded from the analysis because the purpose of this NIH-funded project is to examine the effect of fertility treatment on the maternal outcomes (e.g. incidence of pre-eclampsia) among viable pregnancies. Reasons for withdrawal included delivery outside of the USA or patient choice. The POFI study and this analysis were approved by the home association{\textquoteright}s Institutional Review Board (IRB). Publisher Copyright: {\textcopyright} 2016, Springer Science+Business Media New York.",
year = "2016",
month = aug,
day = "1",
doi = "10.1007/s10815-016-0733-1",
language = "English (US)",
volume = "33",
pages = "993--999",
journal = "Journal of Assisted Reproduction and Genetics",
issn = "1058-0468",
publisher = "Springer New York",
number = "8",
}