Winter 2022

The X-Factor
By Susan Chapman, MA, MFA, PGYT
For The Record
Vol. 34 No. 1 P. 8

Learn how HIM departments are adapting to nonbinary birth certificates.

In the United States, 14 states and the District of Columbia currently allow individuals to choose a third gender option—specifically, the nonbinary gender marker X—on state-issued birth certificates. The nonbinary designation includes “any person who does not identify with a gender that falls within the traditional male/female or man/woman category” as well as intersex individuals.

Some states allow changes to gender designation on birth certificates, from male to female and vice versa, but not specifically a nonbinary designation. And rules for being able to change gender markers vary from state to state. Idaho, for instance, allows individuals to change gender markers without medical or court requirements, while Arizona requires sex reassignment surgery before a birth certificate change can be made. In some states, the rules are unclear and, in one state, Tennessee, changes are not permitted.

Among the benefits of being able to select the third gender, nonbinary, option on a birth certificate are having a placeholder until a child can self-identify, relieving stress on parents who have a child born with a sexual variation, and alleviating challenges for those who identify differently than their biological sex and/or gender designation at birth.

How It Affects Patient Matching
The dynamic evolution of gender identification on birth records leads to questions about how these changes will impact HIM, particularly as they pertain to patient matching—or if they will have any effect at all.

Gevik Nalbandian, vice president of software engineering for NextGate, who points out that both biological sex and gender identification can change over the course of a person’s lifetime, believes that gender is not the correct element to use for patient identification. Nalbandian, whose company focuses on patient identification, explains that “biological sex can change because of a procedure, and gender can change because of how we identify. From an HIM standpoint, the latter can be more complicated. If a patient has a procedure, then there are a date and medical records for that procedure. But gender identification lacks this type of documentation. Therefore, gender is not the right thing to use for identification because it can change in this way.”

Danny Cidon, chief technology officer at NextGate, does not believe that gender-identity changes on birth certificates will impact patient matching, concurring with Nalbandian that gender is not a critical data point. “When it comes to deciding whether two records correspond to the same person or not, knowing a person’s gender is statistically not very useful information,” he says. “Rather than gender identification, we tend to have biological sex as a field communicated by systems, which ultimately has minimal effect on the matching process because it is neither distinct nor reliable. It is far more important to know a patient’s date of birth or home address rather than how they identify themselves. Ultimately, a birth certificate should not hinder an organization’s ability to provide care.”

However, Neysa Noreen, MS, RHIA, an inpatient coding and clinical documentation improvement manager at Children’s Hospitals and Clinics of Minnesota, disagrees, noting that birth certificates are a vital part of her facility’s patient-intake process. With the advent of gender-neutral birth certificates, she says the organization has one less patient-identifying factor.

“If patients return and want to change their gender, one of the challenges is how that impacts our algorithms. Each EMR has its own set of patient-matching algorithms. All data elements come into play, and we assign percentages to those data elements. Some organizations may give weight to a name, gender, or date of birth to allow more patients to appear on the screen when searching for someone. This helps eliminate duplicates,” Noreen explains. “The more elements you include, the more successfully you can match patients.”

“Currently, a lot of our patient matching involves biological sex,” says Mary Beth Haugen, the founder and CEO of Haugen Consulting Group and Haugen Academy. “It may be an element that is not needed due to technology advances; however, it is a critical data element for patient care and research. Future options for patient identification will get more sophisticated at the time we register patients, using technology like facial recognition or finger printing.”

Potential Complications
Cidon says that complications could arise from any system, policy, or workflow that embeds a designation for sex or gender. “We’ve seen this in Scotland. For whatever reason, they’ve decided that their community health identifier has the biological sex embedded in it, a one or a two, two possibilities to choose from. A bigger problem arose with sex reassignment surgery because the person has to have a new identifier constructed. There are then a lot of workflows around validating whether a patient can receive a certain procedure and could then be denied access based on that individual’s identifier,” he says.

Stevan Hidalgo, MS, RHIA, CHPS, who serves as operations manager for HIM at Children’s Hospital Colorado, foresees potential complications from these changes from an administrative perspective, citing such issues as duplicates and overlays of records. But he, like Cidon, emphasizes the patient care complications that can result. “From a patient care perspective, there can be errors in organ inventory,” Hidalgo explains. “If a patient’s gender and biological sex are mismatched, for example, a transgender male may still have female organs and that can present complications if the record is not accurate. Providers may not be using the correct diagnostic tools because they don’t know of the patient’s reassignment surgery. A transgender female may still have a prostate while a transgender male may still have a uterus, leading to missed opportunities to diagnose and treat a patient correctly.”

Much like the example Hidalgo provides, where transgender individuals can be misdiagnosed or even not be tested for certain conditions, parallel issues can occur in the coding process and in generating alerts for preventative care. “Where the issue of how someone identifies comes up right now within most EMR systems, most rules include biological sex,” Haugen says. “This comes up for claims with ICD-10 codes for diagnoses or procedures that can only be done on a certain sex. We have to do a lot of workarounds to override the edits that are put in place so that we don’t accidentally assign prostate cancer to a female. There is still a lot of work that needs to be done from an EMR perspective to have clean data. How do we account for people’s sex vs gender so that patient doesn’t fall through the cracks for preventative care such as mammograms, prostate cancer checks, etc? My concern is how we can put those rules into place to give those individuals those important notifications.”

From a revenue cycle perspective, there can be nonpayments if the payer’s and hospital’s patient files do not have matching genders. “This can present financial complications for the patient and will also get the administration’s attention,” Hidalgo says.

The potential for error also can crop up when trying to identify twins of the same sex, something that is common at Children’s Hospitals and Clinics of Minnesota. “There are also so many people who have only one letter difference in their names. If you have their sex missing, it just creates more complexity. It’s one element that is going to prevent that data exchange from being successful and make it more difficult to reduce duplicates,” Noreen says.

To help mitigate potential problems, Children’s Hospitals and Clinics of Minnesota has moved to using birth sex and preferred pronouns. “We still want to collect birth sex, but we want to create a more concrete distinction between sex and gender for data collection,” Noreen says. “In Minnesota, a pediatric patient can’t decide to have a sex change without going through the courts because of their age, but we can still acknowledge how they identify, apart from their biological sex. And there are a lot of babies who are born with ambiguous genitalia, and parents feel compelled to decide which way to go. A gender-neutral birth certificate can be very helpful in this instance.”

Different EMRs have different fields, with some having only a field for biological sex while others allow for biological sex and gender as separate designations. Noreen says that having both fields allows for more flexibility. “We’ve been working with the ONC [Office of the National Coordinator for Health Information Technology] and have had a lot of conversations about this. We collect birth sex but then want to be able to have an additional field for the gender that you want us to identify you as,” she says.

Accurate Information Is a Necessity
Ensuring that HIM departments are working with accurate information begins at a facility’s governance level, Hidalgo says. “They have to have tight policies and best practices around creation of new medical records, changing the name and gender of the patient, making sure we have the legal documentation to support that, standardization of data collection practices—for example, how the middle initial is documented, how the legal name is documented. This information should be verified at each encounter or admission as things could have changed since the last time the patient was seen,” he says.

Those best practices also extend to health information exchanges (HIEs), which accept data the way the information is sent. Hidalgo believes it’s imperative that facilities align their practices with an HIE and empower it to update any incorrect data. “They [HIEs] get data from many facilities, so they have ways of verifying what is the source of truth,” he says. “I’m not sure any HIE is doing this, and that is something that should or will happen at some point.”

Noreen acknowledges that sometimes working to ensure the information is accurate by requiring legal documentation creates frustration for families, but that doing so enables data integrity. “When you think about identity theft, when someone may use someone else’s information, we want legal documentation so that the records accurately reflect the patient’s information,” she explains. “When we send information outbound, we’re using the same information, which allows for interoperability and patient matching to be successful.”

For organizations seeking to tighten their data integrity process, Noreen recommends looking for systems and vendors that have as many detailed individual data elements as possible so that all the information can be shared appropriately among systems. “It’s a big challenge for HIM professionals. In general, we’re quiet and conservative, not assertive; we don’t want to make waves, but we have to move outside our comfort zones. People don’t understand what we need unless we start telling them,” she says.

The Value of Making Gender Identification Changes
At Children’s Hospital Colorado, home to the TRUE Center for Gender Diversity, a clinic for gender-diverse children, adolescents, and young adults, administrators will change a patient’s gender based on instructions from the clinic’s physicians or providers.

“At the same time, we have to make sure that all the proper documentation is available so that we’ll get reimbursed for that care,” Hidalgo explains. “Through the SOGI form—the sexual orientation and gender identity form—our EMR allows for documentation for both gender and sex, in addition to preferred pronouns and organ inventory.”

Cidon emphasizes the importance of such advances. “It matters if it matters to the patient,” he says. “There are a lot of things coming in NextGate’s product roadmap, which will allow our patients to more actively participate in how much they want to share, what data elements they believe are relevant. Things come up—prior names, people who have been adopted, and they don’t always work well in today’s model. We’re working on a means of identification that people will carry on their phone, so that things like a birth certificate will be digital in the same way that some states are offering a digital driver’s license. We want to piggyback on that movement, so that the patient can go back to the provider to have an attribute change. Right now, you have no visibility or control to know what your provider knows about you. This will take a little while, but we’ve identified it as a crucial strategy going forward. It will take time for this to happen as an industry.”

As Cidon acknowledges, gender identification for patients moves far beyond the administrative aspects of the patient experience. Hidalgo shares how one pediatric patient’s gender-identification awareness helped advance Children’s Hospital Colorado’s way of viewing and addressing gender.

“We had a transgender male who told his mother that his gender was wrong on his wristband, and he didn’t like it. The mom was on our Patient & Family council, and that feedback was the catalyst for our getting together to resolve this,” he says. “What it came down to is our removing the gender marker on the wristband. It’s everywhere else in the medical record but not on the wristband. We checked everywhere downstream to see if there would be a problem with this small but important change, and there wasn’t.”

These conversations are happening within some organizations but perhaps not in all. “I think, right now, if an organization is not having the conversation about gender, they need to have it with IT, HIM, patient access, and clinicians,” Haugen says. “We want to make sure that we’re not just having this discussion from a patient-matching perspective, but we have to be asking, ‘What are the other consequences?’ Organizations need to know what is happening in their state, because it’s state specific, and work with their EMR vendor. And we also need something at the federal level. We have to look down the road at this critical issue, decide best practices, and prepare to answer those questions proactively.”

— Susan Chapman, MA, MFA, PGYT, is a Los Angeles–based freelance writer and editor.