Domain

Learning Health System

Type

Case Study or Comparative Case Study

Theme

population

Start Date

7-6-2014 1:15 PM

End Date

7-6-2014 2:45 PM

Structured Abstract

Introduction & Purpose

LGBT individuals face unique health issues which are poorly understood. Among the recent Institute of Medicine (IOM) recommendations are that the National Institutes of Health (NIH) implement an LGBT-focused research agenda, including standardization of sexual orientation and gender identity measures, collection of these measures in electronic health records (EHRs), and support for methodological research related to LGBT health. Although standards have been proposed for transgender-related variables in particular, there has been little progress in implementation in EHRs The purpose of this study was to apply a variety of expert- and informatics-based approaches to characterize the health-related needs of LGBT populations as a foundation for improving care and decreasing health disparities.

Methods

As part of the Washington Heights/Inwood Informatics Infrastructure for Comparative Effectiveness Research (WICER) project (R01HS019853), we interviewed >5,800 individuals in the primarily Latino community of Washington Heights/Inwood to gather sociodemographic, anthropometric, health behavior, health status, and patient-reported outcomes data and stored these data in a REDCap database. Concurrently, we created an informatics infrastructure that included a Research Data Warehouse (RDW) that included: electronic clinical data from Columbia University Medical Center, a tool for querying the RDW, Research Data Explorer (RedX), and an algorithm for linking the community survey data with electronic clinical data. In WICER 4 U, we are extending the infrastructure to include a set of algorithms for cohort identification and to address bias and missingness in electronic clinical data. More than 1,500 survey respondents reported sexual health issues as a top health concern which led us to form the WICER Sexual Health Working Group (SHWG) to generate and implement a relevant research agenda. LGBT health was identified as a key interest of Working Group members.

Innovation

First, we analyzed the health concerns of the LGBT community survey cohort. Second, SHWG members compiled 49 sexual health topics that were used to query the RDW using RedX. Twelve topics returned no results; 37 topics were linked to 217 clinical concepts of which 190 were unique, such as HIV Counseling and Trans-Sexualism NOS. Because most survey respondents agreed to linkage of survey and electronic clinical data, next we will use RedX to retrieve the electronic clinical data for survey participants who identified as LGBT and identify a cluster of clinical concepts from those records that may help identify other LGBT participants.

Lessons Learned

Although the community survey included a question regarding sexual orientation, in this Latino community where many surveys were administered in the presence of other household members, less than 2% identified as LGBT. Analysis of linked clinical data may improve our ability to identify LGBT individuals, thus providing an opportunity to characterize their health-related needs more thoroughly than through survey data alone.

Next Steps

The expertise of the SHWG combined with the resulting cluster of clinical concepts will provide the foundation for the development of a formal algorithm for identification of LGBT individuals in electronic clinical data as an essential first step to characterizing health-related needs in order to reduce health disparities.

Acknowledgements

This research is supported by R01HS019853, R01HS022961, NYS Department of Economic Development NYSTAR (C090157). Dr. Arcia is supported by T32NR007969. Ms. Bjarnadottir is supported by R01 NR013687. Dr. Brown is supported by 5T15LM007079.

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Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

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Jun 7th, 1:15 PM Jun 7th, 2:45 PM

Application of Expert- and Informatics-Based Approaches to Understand the Health-Related Needs of LGBT Populations

Introduction & Purpose

LGBT individuals face unique health issues which are poorly understood. Among the recent Institute of Medicine (IOM) recommendations are that the National Institutes of Health (NIH) implement an LGBT-focused research agenda, including standardization of sexual orientation and gender identity measures, collection of these measures in electronic health records (EHRs), and support for methodological research related to LGBT health. Although standards have been proposed for transgender-related variables in particular, there has been little progress in implementation in EHRs The purpose of this study was to apply a variety of expert- and informatics-based approaches to characterize the health-related needs of LGBT populations as a foundation for improving care and decreasing health disparities.

Methods

As part of the Washington Heights/Inwood Informatics Infrastructure for Comparative Effectiveness Research (WICER) project (R01HS019853), we interviewed >5,800 individuals in the primarily Latino community of Washington Heights/Inwood to gather sociodemographic, anthropometric, health behavior, health status, and patient-reported outcomes data and stored these data in a REDCap database. Concurrently, we created an informatics infrastructure that included a Research Data Warehouse (RDW) that included: electronic clinical data from Columbia University Medical Center, a tool for querying the RDW, Research Data Explorer (RedX), and an algorithm for linking the community survey data with electronic clinical data. In WICER 4 U, we are extending the infrastructure to include a set of algorithms for cohort identification and to address bias and missingness in electronic clinical data. More than 1,500 survey respondents reported sexual health issues as a top health concern which led us to form the WICER Sexual Health Working Group (SHWG) to generate and implement a relevant research agenda. LGBT health was identified as a key interest of Working Group members.

Innovation

First, we analyzed the health concerns of the LGBT community survey cohort. Second, SHWG members compiled 49 sexual health topics that were used to query the RDW using RedX. Twelve topics returned no results; 37 topics were linked to 217 clinical concepts of which 190 were unique, such as HIV Counseling and Trans-Sexualism NOS. Because most survey respondents agreed to linkage of survey and electronic clinical data, next we will use RedX to retrieve the electronic clinical data for survey participants who identified as LGBT and identify a cluster of clinical concepts from those records that may help identify other LGBT participants.

Lessons Learned

Although the community survey included a question regarding sexual orientation, in this Latino community where many surveys were administered in the presence of other household members, less than 2% identified as LGBT. Analysis of linked clinical data may improve our ability to identify LGBT individuals, thus providing an opportunity to characterize their health-related needs more thoroughly than through survey data alone.

Next Steps

The expertise of the SHWG combined with the resulting cluster of clinical concepts will provide the foundation for the development of a formal algorithm for identification of LGBT individuals in electronic clinical data as an essential first step to characterizing health-related needs in order to reduce health disparities.