Fenway News 12.26.2012

Fenway Calls for Inclusion in IOM Report on Collecting Sexual Orientation and Gender Identity Data in EHRs

Last week, The Institute of Medicine (IOM) of The National Academies released a summary of presentations and discussions from the October 12 IOM workshop Sexual Orientation and Gender Identity Data Collection in Electronic Health Records. The one-day workshop brought together prominent health care organizations, LGBT (lesbian, gay, bisexual and transgender) health organizations, and groups involved in the development and implementation of electronic health records (EHRs) to present varying viewpoints on the collection of sexual orientation and gender identity data in EHRs. That summary is available here.

The release of the summary does not represent a new position statement or recommendations on the part of the IOM, but is intended to make the workshop discussion more widely available to spur further conversation on the issue.

As reflected in the summary documents, the majority of those involved in the workshop recognized the importance of routine collection of sexual orientation and gender identity in health care settings and of including that information in electronic health records. Gathering such data will help healthcare providers to better understand LGBT health disparities and address them. Fenway Health and The Fenway Institute strongly endorse those calls for more widespread and systematic collection of information on patient sexual orientation and gender identity.

Alex Gonzalez, MD, Fenway Health’s Medical Director, and Harvey J. Makadon, MD, Director of The National LGBT Health Education Center at The Fenway Institute, both discussed the importance of capturing data on sexual orientation and gender identity at the workshop, and Dr. Gonzalez shared Fenway’s approach to doing that. Dr. Makadon also served on the panel’s Planning Committee and delivered a presentation that helped frame the discussion. You can view the PowerPoint slides from that presentation here.

“Providing quality affirmative care for LGBT people requires that we end LGBT invisibility in health care by working with health professionals to ask their patients about their sexual orientation and gender identity and evaluating ways for patients to enter information directly into electronic health records to then discuss with their providers,” said Dr. Makadon. “Only then will we be able to assure patient centered care and evaluate quality outcomes of care provided to LGBT people. This is consistent with the findings of others. In a recent study funded by the National Institute of Mental Health, Durson and Meyer stated that, ‘public health professionals recommend that lesbians, gay men, and bisexuals (LGB) disclose their sexual orientation to healthcare personnel to facilitate optimal care.’”

(You can read more about the study Dr. Makadon references in his quote here.)

“The lack of functionality in electronic health records with respect to capturing sexual orientation and gender identity data in structured ways leads to bad outcomes in serving LGBT people and in being able to accurately describe, advocate for, and report on these groups,” said Dr. Gonzalez. “The medical and research communities can collaborate with EHR vendors and government agencies to overcome these very surmountable data challenges. In turn, we will be more effective as a health care community and as a nation at identifying and addressing the health care needs of a historically underserved population.”

In January, The Fenway Institute released two Policy Focus briefs highlighting the importance of gathering sexual orientation and gender identity data in clinical settings and to provide guidance to clinicians to gather such data. Why gather data on sexual orientation and gender identity in clinical settings explains how gathering such data will help understand LGBT health disparities, and how it is consistent with key recommendations in Healthy People 2020, the 2011 Institute of Medicine report on LGBT health issues and research gaps, and the Affordable Care Act. Gathering such data in electronic health records is especially important. You can view that report as a PDF here.

How to gather data on sexual orientation and gender identity in clinical settings provides guidance on how to ask questions on patient registration form and how clinicians can ask questions during medical visits. This second brief addresses concerns about confidentiality with EHRs and other potential barriers to collecting data on LGBT identity. You can view that report as a PDF here.

In July, The Fenway Institute’s National Center for LGBT Health Education issued a publication called Improving the Health Care of Lesbian, Gay, Bisexual and Transgender (LGBT) People: Understanding and Eliminating Health Disparities. This document offers a brief but comprehensive overview of the major issues relevant to the health and health care of lesbian, gay, bisexual and transgender people. You can view that report as a PDF here.

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