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Push for LGBT inclusion in healthcare records
From a news release
2012-12-22

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Today, 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.

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.

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.

The Institute of Medicine is an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public. Established in 1970, the Institute of Medicine is the health arm of the National Academies.

The National Academies was chartered in 1863 under President Abraham Lincoln as the National Academy of Sciences. It has since expanded and is now known collectively as The National Academies, which perform an unparalleled public service by bringing together committees of experts in all areas of scientific and technological endeavor to serve as advisors to the nation on science, engineering and medicine. These experts serve pro bono to address critical national issues and give advice to the federal government and the public. Four organizations comprise the Academies: the National Academy of Sciences, the National Academy of Engineering, the Institute of Medicine and the National Research Council.

For more than forty years, Fenway Health has been working to make life healthier for the people in our neighborhood, the LGBT community, people living with HIV/AIDS and the broader population. The Fenway Institute at Fenway Health is an interdisciplinary center for research, training, education and policy development focusing on national and international health issues. Fenway's Sidney Borum Jr. Health Center cares for youth and young adults ages 12 to 29 who may not feel comfortable going anywhere else, including those who are LGBT or just figuring things out; homeless or living on the streets; struggling with substance use or abuse; sex workers; or living with HIV/AIDS.


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