By Julie Dooling, MSHI, RHIA, CHDA, FAHIMA, and Lesley Kadlec, MA, RHIA, CHDA
Eliminating the health disparities among LGBTQ individuals and working to enhance the efforts to improve overall LGBT health through the collection of accurate sexual orientation and gender identity (SO/GI) data was the focus of the Tuesday session “SO/GI Data: Up Close with The Fenway Institute.” The audience listened as Jami Woebkenberg, MHIM, RHIA, CPHI, FAHIMA, of Banner Health interviewed Chris Grasso, MPH, associate VP for informatics and data services at The Fenway Institute, a counterpart to Fenway Health that focuses on research, education, and policy. The Fenway Institute works to improve care for the LGBTQ (lesbian, gay, bisexual, transgender, and gender queer) community, people living with HIV/AIDS, and the general community.
Grasso explained healthcare issues that concern the LGBTQ community and led an active discussion on the collection of Sexual Orientation/Gender Identity (SO/GI) data. The discussion covered why collection of the data is important, what it may be used for, and how it is being captured in today’s electronic health record (EHR) environment. Their work is far from finished. “There is still a lot that we don’t know,” Grasso said. “LGBTQ youth are a very vulnerable group, at risk for homelessness, [with] higher rates of health disparities and infection.”
Grasso also explained that they have found LGBTQ populations have high rates of tobacco, alcohol, and other drug use and that lesbian women and bisexual women are less likely than heterosexual women to get preventive services for cancer. In fact, according to the presenters, a 2011 National Transgender Discrimination Survey revealed that 26 percent of transgender individuals used drugs/alcohol to cope with discrimination and 30 percent smoked cigarettes either daily or occasionally (compared to 20 percent of all US adults).
There are many ways health information management professionals can act as allies to the LGBTQ population and advocate for changes that are needed to support their care, such as:
- Better collection of data, through use of EHR forms and integration of the anatomical inventory, gender, and sexual orientation fields into clinical decision support systems
- Collection of name and pronoun fields in the structured fields that are used throughout EHRs
- Transmission and sharing of name, pronoun, and gender information through interoperability between health information technology systems
Among the next steps on Grasso’s to-do list are advocating for better collection on the CMS 1500 Form and expanding the sex categories.
Grasso encouraged attendees to talk to their EHR vendor about expanding tools and insurance companies to expand sex fields and working with them to not automatically reject the claims. She pointed out the organ inventory form as an example of an EHR function that enables better collection of data. “It helps to identify body parts,” she explained. “It is extremely helpful in including or excluding people for certain procedures.”
Better collection of data and the improved ability to share that information can go a long way toward ensuring LGBTQ patients receive high quality healthcare that addresses their needs.
“Advocate for changes,” Grasso said.