Boston, MA-- In 2010, the U. S. Department of Health and Human Services recommended routine collection of sexual orientation (SO) information in healthcare settings, with the National Academy of Medicine issuing a similar recommendation one year later. In 2015, the Centers for Medicare and Medicaid Services released guidelines which require that electronic health record companies have the capacity to accommodate this information, but few hospitals have begun routinely collecting it. There are no clear guidelines or best practices on how this data should be collected and many have questioned this mandate, concerned that patients may not want to disclose such information.
A new publication from the EQUALITY Study, a collaborative effort between researchers at Brigham and Women's Hospital (BWH), Harvard Medical School and the Johns Hopkins University School of Medicine, highlights the discordant views of patients and providers on the topic of collecting SO information in the Emergency Department (ED). 77.8 percent of providers included in the study thought patients would refuse to provide SO information in the ED, but only 10.3 percent of patients reported that they would refuse to provide such information. The results were published online in JAMA Internal Medicine on April 24, 2017.
"Our findings demonstrate that the majority of Americans, including Lesbian, Gay and Bisexual (LGB) individuals are willing to disclose their sexual orientation in the ED setting. This is important information that patients feel is relevant to their health, and in most cases, they want and expect their healthcare providers to ask them about it," said Adil Haider, MD, MPH, Kessler Director of the Center for Surgery and Public Health at BWH, principal investigator for the EQUALITY Study, and first author of the publication. "Our patients are telling us that routinely asking all patients who come to the ED about this information creates a sense of normalcy toward people of all sexual orientations and signals that each patient is equally welcome here, including the 3 to 10 percent of Americans who identify as lesbian, gay or bisexual."
The multisite, multi-year study utilized an exploratory sequential mixed-methods design. First, researchers conducted 79 in-depth qualitative (53 patients and 26 providers) in the Baltimore, MD and Washington, DC area. With feedback from a Stakeholder Advisory Board, the results from these interviews informed the development of quantitative surveys, which were then administered to 1,516 potential patients who identified as lesbian, gay, bisexual and straight, and 429 ED providers, including both physicians and nurses. Participants were recruited using random digit dialing and addressed-based sampling techniques from across the United States and were eligible if they were 18 years or older and consented to participate in the online survey.
The study explored views of patients and providers on the topic of collecting SO information as well as preferred methods for collecting this information. After adjusting for demographic characteristics including sex, age, education, race, marital status, rental status, head of household, work status and income, only bisexual patients had significantly increased odds of refusing to provide sexual orientation compared to straight patients. Findings also revealed that lesbian women were less likely to refuse than gay men. Both patients and providers indicated that they favored non-verbal self-reporting (via paper or electronic formats) over verbal reporting (responding to questions asked by a nurse, physician, or registrar) as their preferred method of reporting their sexual orientation to care providers.
"In order to identify and address health disparities among LGB populations, we must implement a standardized, patient-centered approach for routine collection of SO data on a broader, national scale," said Brandyn Lau, MPH, CPH, assistant professor of surgery and health sciences informatics at the Johns Hopkins University School of Medicine, site principal investigator for the EQUALITY Study and senior author of the publication. "These findings affirm the need for collection, are critical to informing how best to collect SO information, and may also be useful in the development of guidelines and policies at the provider level and beyond."
Given the highly nuanced considerations surrounding the interviewing and surveying of transgender individuals, an additional specialized national survey was created for this group, the results of which have been reported in a separate publication. Other publications resulting from this study have focused on the risks and benefits of SO/GI collection and patient and staff perspectives of implementing SO/GI data collection.
This research was supported with funding from the Patient Centered Outcomes Research Institute (PCORI Award AD-1306-03980).
The Center for Surgery and Public Health (CSPH) at Brigham and Women's Hospital was established in 2005 as a joint program of Harvard Medical School and the Harvard T. H. Chan School of Public Health. Its mission is to advance the science of surgical care delivery by studying effectiveness, quality, equity, and value at the population level, and developing surgeon-scientists committed to excellence in these areas. CSPH works with a diverse set of collaborators, including academic institutions, non-profit and for-profit organizations nationally and internationally, in order to eliminate disparities and foster patient-centered care through policy and practice.
Brigham and Women's Hospital (BWH) is a 793-bed nonprofit teaching affiliate of Harvard Medical School and a founding member of Partners HealthCare. BWH has more than 4.2 million annual patient visits and nearly 46,000 inpatient stays, is the largest birthing center in Massachusetts and employs nearly 16,000 people. The Brigham's medical preeminence dates back to 1832, and today that rich history in clinical care is coupled with its national leadership in patient care, quality improvement and patient safety initiatives, and its dedication to research, innovation, community engagement and educating and training the next generation of health care professionals. Through investigation and discovery conducted at its Brigham Research Institute (BRI), BWH is an international leader in basic, clinical and translational research on human diseases, more than 1,000 physician-investigators and renowned biomedical scientists and faculty supported by nearly $600 million in funding. For the last 25 years, BWH ranked second in research funding from the National Institutes of Health (NIH) among independent hospitals. BWH continually pushes the boundaries of medicine, including building on its legacy in transplantation by performing a partial face transplant in 2009 and the nation's first full face transplant in 2011. BWH is also home to major landmark epidemiologic population studies, including the Nurses' and Physicians' Health Studies and the Women's Health Initiative as well as the TIMI Study Group, one of the premier cardiovascular clinical trials groups. For more information, resources and to follow us on social media, please visit BWH's online newsroom.