Capturing Sex Partner Information in the Electronic Health Record: Implications for Research on Sexual Minorities Within an Integrated Health Care Delivery System

Background/Aims: To better characterize and reduce health disparities faced by sexual and gender minorities (SGM), efforts to collect sexual orientation and gender identity within the electronic health record (EHR) are currently burgeoning across the United States. In 2006, Kaiser Permanente Northwest (KPNW) began collecting information about sexual activity of patients and the sex of their partners in the social history module of its EHR. The aims of our work were to describe trends in the capture of this information over a 9-year period and discuss the relevance of these findings to current sexual orientation and gender identity data collection and SGM health research efforts. Methods: We included all KPNW members with at least one day of health plan enrollment and at least one in-person encounter (outpatient, inpatient or emergency department) from Jan. 1, 2006, to Dec. 31, 2014. We analyzed sexual activity and sex partner variables at encounter and individual levels over the study period. Results: From 2006 to 2014, the proportion of encounters at which a patient’s sexual activity was recorded increased from 1.2% to 15.1% for males and from 2.9% to 27.4% for females, with an increase among primary care encounters from 2.8% to 29.6% for males and 4.6% to 49.1% for females. Of our study population still enrolled in 2014, 37,890 males (22.1%) had a sex partner recorded, 94.6% of which had female only, 5.1% male only and 0.3% both. At the same time, 87,851 females (40.7%) had a sex partner recorded, 96.8% of which had male only, 2.8% female only and 0.4% both. Conclusion: Our findings suggest an increasingly systematic capture of sexual activity and sex partner information within the KPNW EHR. Sexual behavior is only one component of sexuality orientation. As such, we are likely underestimating the size of our SGM population, especially for those reporting both male and female partners, based on previously published estimates. However, our research supports the idea that successful routine capture of sexual orientation and gender identity data within the EHR is possible. We argue that inclusion of these data would lead to a better understanding of the size and representativeness of the SGM population, more robust research studies and better interventions to reduce SGM health disparities

Capturing Sex Partner Information in the Electronic Health Record: Implications for Research on Sexual Minorities Within an Integrated Health Care Delivery System

Background/Aims: To better characterize and reduce health disparities faced by sexual and gender minorities (SGM), efforts to collect sexual orientation and gender identity within the electronic health record (EHR) are currently burgeoning across the United States. In 2006, Kaiser Permanente Northwest (KPNW) began collecting information about sexual activity of patients and the sex of their partners in the social history module of its EHR. The aims of our work were to describe trends in the capture of this information over a 9-year period and discuss the relevance of these findings to current sexual orientation and gender identity data collection and SGM health research efforts. Methods: We included all KPNW members with at least one day of health plan enrollment and at least one in-person encounter (outpatient, inpatient or emergency department) from Jan. 1, 2006, to Dec. 31, 2014. We analyzed sexual activity and sex partner variables at encounter and individual levels over the study period. Results: From 2006 to 2014, the proportion of encounters at which a patient’s sexual activity was recorded increased from 1.2% to 15.1% for males and from 2.9% to 27.4% for females, with an increase among primary care encounters from 2.8% to 29.6% for males and 4.6% to 49.1% for females. Of our study population still enrolled in 2014, 37,890 males (22.1%) had a sex partner recorded, 94.6% of which had female only, 5.1% male only and 0.3% both. At the same time, 87,851 females (40.7%) had a sex partner recorded, 96.8% of which had male only, 2.8% female only and 0.4% both. Conclusion: Our findings suggest an increasingly systematic capture of sexual activity and sex partner information within the KPNW EHR. Sexual behavior is only one component of sexuality orientation. As such, we are likely underestimating the size of our SGM population, especially for those reporting both male and female partners, based on previously published estimates. However, our research supports the idea that successful routine capture of sexual orientation and gender identity data within the EHR is possible. We argue that inclusion of these data would lead to a better understanding of the size and representativeness of the SGM population, more robust research studies and better interventions to reduce SGM health disparities

Generation and characterization of a control and patient-derived human iPSC line containing the Hermansky Pudlak type 2 (HPS2) associated heterozygous compound mutation in AP3B1

Induced pluripotent stem cells (iPSCs) were generated from blood outgrowth endothelial cells (BOECs) obtained from a healthy donor and from a patient diagnosed with Hermansky Pudlak Syndrome type 2 (HPS2), caused by compound heterozygous AP3B1 mutations (c.177delA and c.1839-1842delTAGA). BOECs were reprogrammed with a hOKSM self-silencing polycistronic lentiviral vector, where the generated iPSCs showed normal karyotype, expression of pluripotency associated markers and in vitro spontaneous differentiation towards the three germ layers. The generated iPSCs can be used to study HPS2 pathophysiology and the basic functions of AP3B1 protein in different cell types.</p

Prospective observational study of early respiratory management in preterm neonates less than 35 weeks of gestation

Abstract Background Current guidelines for management of respiratory distress syndrome (RDS) recommend continuous positive airway pressure (CPAP) as the primary mode of respiratory support even in the most premature neonates, reserving endotracheal intubation (ETI) for rescue surfactant or respiratory failure. The incidence and timing of ETI in practice is poorly documented. Methods In 27 Level III NICUs in the US (n = 19), Canada (n = 3) and Poland (n = 5), demographics and baseline characteristics, respiratory support modalities including timing of ETI, administration of surfactant and caffeine/other methylxanthines, and neonatal morbidities were prospectively recorded in consecutive preterm neonates following written parental consent. Infants were divided into three groups according to gestational age (GA) at birth, namely 26–28, 29–32 and 33–34 weeks. Statistical comparisons between groups were done using Chi-Square tests. Results Of 2093 neonates (US = 1507, 254 Canada, 332 Poland), 378 (18%) were 26–28 weeks gestational age (GA), 835 (40%) were 29–32 weeks, and 880 (42%) were 33–34 weeks. Antenatal steroid use was 81% overall, and approximately 89% in neonates ≤32 weeks. RDS incidence and use of ventilatory or supplemental oxygen support were similar across all sites. CPAP was initiated in 43% of all infants, being highest in the 29–32-week group, with a lower proportion in other GA categories (p < 0.001). The overall rate of ETI was 74% for neonates 26–28 weeks (42% within 15 min of birth, 49% within 60 min, and 57% within 3 h), 33% for 29–32 weeks (13 16 and 21%, respectively), and 16% for 33–34 weeks (5, 6 and 8%, respectively). Overall intubation rates and timing were similar between countries in all GAs. Rates within each country varied widely, however. Across US sites, overall ETI rates in 26–28-week neonates were 30–60%, and ETI within 15 min varied from 0 to 83%. Similar within 15-min variability was seen at Polish sites (22–67%) in this GA, and within all countries for 29–32 and 33–34-week neonates. Conclusion Despite published guidelines for management of RDS, rate and timing of ETI varies widely, apparently unrelated to severity of illness. The impact of this variability on outcome is unknown but provides opportunities for further approaches which can avoid the need for ETI

The Eritrean Military/National Service Programme: Slavery and the notion of persecution in refugee status determination

Despite the overwhelming evidence of human rights violations within the Eritrean Military/National Service Programme (“MNSP”), adjudication of asylum applications made by Eritreans remains a challenge. Narrow interpretations of “slavery” have created obstacles for protection under the 1951 Convention Relating to the Status of Refugees (“1951 Refugee Convention”). This article discusses MST and Others, the latest Country Guidance case on Eritrea issued by the UK Upper Tribunal Immigration and Asylum Chamber (“UTIAC”), and also the lead case E-5022/2017 of the Swiss Federal Administrative Court (“FAC”), which to a large extent replicated the UTIAC’s approach. The article focuses on how “slavery,” “servitude” and “forced labour” under article 4 of the European Convention on Human Rights (“ECHR”) have been interpreted in the British and Swiss case-law. While both, the British and the Swiss Courts, had recourse to the European Court of Human Rights’ (“ECtHR”) interpretation of article 4(1) ECHR (the right not to be subjected to slavery or servitude), they refused the applicability of international criminal law notions to this provision, and thus to the concept of “persecution” in article 1A(2) of the 1951 Refugee Convention. In doing so, the UTIAC and the FAC set unreasonable requirements to satisfy article 4(1) ECHR. Due to the very limited case-law pertaining to slavery by the ECtHR, the ECHR does not offer an appropriate framework for examining asylum applications of victims of slavery. It is therefore suggested that slavery cases are considered against a wider legal framework, which involves the examination of concepts developed by international criminal law (“ICL”). ICL has indeed developed a significant body of jurisprudence on the interpretation of the international law concept of “slavery” and its application to contemporary situations. The article contrasts the British and Swiss Courts’ position to develop an interpretative approach that connects different areas of international law, including not only international refugee law and international human rights law (“IHRL”), but also ICL. If applied in line with the principle of systemic integration and according to the overall purposes of the 1951 Refugee Convention, this approach would yield consistent results. Ultimately, this article seeks to assist asylum decision-makers and practitioners in the interpretation and application of the refugee definition to asylum applications of persons from Eritrea

Development of a neonatal adverse event severity scale through a Delphi consensus approach

BACKGROUND: Assessment of the seriousness, expectedness and causality are necessary for any adverse event (AE) in a clinical trial. In addition, assessing AE severity helps determine the importance of the AE in the clinical setting. Standardisation of AE severity criteria could make safety information more reliable and comparable across trials. Although standardised AE severity scales have been developed in other research fields, they are not suitable for use in neonates. The development of an AE severity scale to facilitate the conduct and interpretation of neonatal clinical trials is therefore urgently needed. METHODS: A stepwise consensus process was undertaken within the International Neonatal Consortium (INC) with input from all relevant stakeholders. The consensus process included several rounds of surveys (based on a Delphi approach), face-to-face meetings and a pilot validation. RESULTS: Neonatal AE severity was classified by five grades (mild, moderate, severe, life threatening or death). AE severity in neonates was defined by the effect of the AE on age appropriate behaviour, basal physiological functions and care changes in response to the AE. Pilot validation of the generic criteria revealed κ=0.23 and guided further refinement. This generic scale was applied to 35 typical and common neonatal AEs resulting in the INC neonatal AE severity scale (NAESS) V.1.0, which is now publicly available. DISCUSSION: The INC NAESS is an ongoing effort that will be continuously updated. Future perspectives include further validation and the development of a training module for users.status: publishe

A global approach for natural history museum collections

International audienceIntegration of the world’s natural history collections can provide a resource for decision-maker