Episode 23: Discussing Gender Harmony

On this episode of the Informonster podcast, Charlie Harp is joined by Janet Campbell, Software Developer and Vice President of Patient Engagement at Epic, Chris Grasso, Chief Information Officer at Fenway Health and Carol Macumber, Executive Vice President at Clinical Architecture to discuss the HL7 Gender Harmony Project. 

Contact Clinical Architecture

• Tweet us at @ClinicalArch
• Follow us on LinkedIn and Facebook
• Email us at informonster@clinicalarchitecture.com

Thanks for listening!

Transcript

Charlie Harp:

Hi, I'm Charlie Harp, and this is the Informonster Podcast. Today on the Informonster Podcast we'll be talking about the HL7 Gender Harmony Project with Janet Campbell from Epic, Chris Grasso from Fenway Health and Clinical Architecture's own Carol Macumber. Why don't we start with some introductions? Carol.

Carol Macumber:

Great. Thanks Charlie. So as Charlie mentioned, my name's Carol Macumber. I am the EVP of Client Services at Clinical Architecture. And in this context, I'm also one of the co-leads of the Gender Harmony Project at HL7. Janet.

Janet Campbell:

Hi, and thanks so much for having me. My name's Janet Campbell, and I'm a software developer with Epic. We make electronic health records. I got involved in our work with sex and gender, actually, thanks to a project that I worked on almost 20 years ago to restrict what diagnoses could be entered in order entry by clinicians so that they would be paid for by insurance. And way back at that time, even 20 years ago, having received my computer science education from a liberal arts school, I was scratching my head and saying, wait a minute, should the legal sex really have that much of an impact on what diagnosis a provider can enter? And that was what started me down this long and winding road to where I am today.

Carol Macumber:

Great. Chris.

Chris Grasso:

Hi, Chris Grasso, Chief Information Officer at Fenway Health. In my current role, I oversee all of our EHR applications and clinical applications. But really Fenway's work and my work involved in the sexual orientation and gender identity work has been going on for more than two decades at this point. And I know that we'll get into some of this conversation a little bit later on, but I can at least start by telling you that Fenway's work, and my work around this, really started about 20 years ago.

Chris Grasso:

In caring for our patients, we knew that we needed a better way to capture this information. We also knew that our systems and technology was inadequate in caring for this patient population. And so it was very important for us to be able to really advocate and help design systems to better care for the LGBTQ community going forward. Thank you.

Charlie Harp:

Thanks for those intros. I'm very excited to be able to discuss this topic with the three of you today. Now the audience of the Informonster Podcast includes informatics folks, software developers, data science gurus, clinical people, and even some business people who are probably secret data nerds, but we can keep that on the down low. Many of these folks might not be plugged into HL7 and haven't been following along with the progress of the Gender Harmony Project, so I think it would be great to provide some history of the project starting with why it was started, and then what it is meant to address, how the process worked to get where we are today, possible implementation challenges that you guys have experienced or encountered, and then maybe some discussion on where you all think we can go from here.

Charlie Harp:

Now, before we get into it, I do want to say that I've been developing systems in healthcare for over 30 years and the classic gender field is something that I always took for granted. It's like the patient's birth date. It was this permanent unchanging piece of metadata that's used everywhere in processing healthcare information. Now, when I first heard about this initiative, I thought it was just more metadata, but after digging a little deeper and frankly stepping out of my own perspective, I gained a new appreciation for how these concepts around clinical sex and gender identity can significantly impact the patient's experience and our ability in healthcare to provide proper care for everyone. So I really appreciate the work that you guys have done in this project. Chris, would you like to start us off with the why, that drove this initiative, from your perspective?

Chris Grasso:

Yeah, it's a really great question. As I mentioned, Fenway's been in existence for about 50 years now and caring for the LGBTQIA patient population. And while we have some expertise in that, we know that not all healthcare organizations do. And what we've also found in doing a lot of this work is that this particular patient population is oftentimes very invisible. A lot of that has to do with the fact that we're not asking people about their gender identity. And because we're not asking people about their gender identity or sexual orientation, or the anatomy that they have, we're making assumptions about them. So we began this process at Fenway, as I said, we've had electronic records for over two decades at this point. But when we began to formally collect this information in our electronic health record, oftentimes people were really nervous about whether or not patients would share this information.

Chris Grasso:

It was never really a concern for patients. The discomfort around this often came from clinical folks and not really having the training and knowing how to really provide care. So for us, that really spearheaded an effort and advocacy work that we did in getting these fields required into EHR records. We knew that this alone wasn't enough, but this was a very critical and important step in having these fields actually located in EHR. Because we knew that if we actually had these fields, we could begin to actually do the work around the education and why it was so critical to collect this information in electronic health records.

Janet Campbell:

Yeah, I think we saw a similar progression from our side at Epic as well. Our first release of our software was in 1979. And even at that point, we'd recognized the importance of having a single patient record that surrounded everything that we do. But the challenge was that in 1979, as you said, Charlie, we had one field and that field was called sex and it was updated when you registered, probably the registrar would put whatever they thought you were into that field. It might have been later updated with your driver's license once you presented and had your formal identification there. If you indicated that you wanted to be called something else in the waiting room, for example, or use a different title, it might have been updated again. But then that field also drove clinical documentation tools. Like whether the system thought that you could menstruate or become pregnant and it even would control how we build insurance on your behalf.

Janet Campbell:

And that was a pretty long state of affairs. And the challenge there is that one field had become overloaded and was asked to do double duty. And if you look, we lived in that state for quite some time, but with some additional reporting requirements that came out of some of the work that the Fenway Institute did. Around 2014, there were increased federal requirements to record this information as a part of certain recording programs. This information would be not just sex generally, but more specifically sex assigned at birth and gender identity. So in 2014, we updated the fields in our system to say that actually by sex, we mean legal sex, which is whatever's currently on your ID, legal identification documents. And we did add those additional fields of sex assigned at birth and gender identity. But as you said, Charlie, this was just metadata.

Janet Campbell:

This was just additional information about the patient that while helpful, didn't drive much in the system. Then around 2017, we had it pointed out, one of organizations ... Actually, let me go back. In 2017 as we continued to draw more attention to these fields and understanding how they should work, we raised a concern internally. And specifically that concern was around creatinine clearance. Now, for those of you who aren't familiar, creatinine clearance is actually a clinical value that is calculated differently for men versus women, for males versus females. And the system would show that calculation, according to the patient's legal sex, which may or may not have anything to do with the anatomy that they have right now.

Janet Campbell:

The challenge that we found that was because the user may have documented additional information about the patient's sex assigned at birth or any other information about their anatomy, they might assume that the system was then using that in its calculations of creatinine clearance. And we determined that that imposed a level of risk for patients that we weren't comfortable with. So in 2017, we fixed those most safety critical areas, but that really opened up the door to say we've been recording these fields for quite some time now. It is time to change the EHR through and through to not only document these additional nuances of sex, gender, and anatomy, but to actually use them throughout the system in the way that they were intended to be used.

Charlie Harp:

I tend to look at things through the lens of data quality. And when you think about it, the classic gender field conflates biological sex and gender identity into a single bucket. Now in the old days, when healthcare systems were more about scheduling and billing, this probably wasn't a very big issue. But now that we have systems that are designed to participate in the clinical process of patient care, the overloading of this field becomes, in my opinion, a data quality problem. Now this is in large part because the quality of the data in your system starts with the data entry itself.

Charlie Harp:

When you force someone to choose what to put into a field that could represent two distinct and potentially conflicting aspects of who they are, whichever one they choose, the information is not actually correct. In fact, I think that separating the concept of biological sex and gender identity is really an important aspect of precision medicine, which is all about providing care that takes the specifics of the patient into consideration. We need to remember in healthcare that the patient and how they feel about how they're represented and included in the process is important. Janet.

Janet Campbell:

One thing that I observed was that in trying to explain why this was important work to be done to a wide audience of people, including many who had never come across this idea of what it means to be a transgender patient or a transgender person. I often found that regardless of what experience you have with that for people with a fully technical background, it was very easy to point out that we are asking a single field to serve multiple purposes. In effect, we were overloading data fields in the system and then expecting there to be data consistency and there wasn't. Even if you had no other knowledge of what it meant to be transgender, it was pretty easy to see that this was indeed a data quality problem.

Chris Grasso:

Yeah, and I wanted to add to Charlie and with Janet said as well, we know that from some of the studies that have come out, nearly a quarter to a third of transgender gender diverse patients report not seeking care because of the way that they're treated or the questions that they're going to be asked along the way. So this is such an important part of the process, to engage the patient in the conversation again and not make assumptions about people or not target certain people to only ask questions of certain populations. We cannot make assumptions about that. So we want to make sure that we're really asking these questions and setting up systems to include everybody. And what we see at Fenway is that we've had to design our own systems or jerry rig systems to ensure that we're providing the correct care to our patients.

Chris Grasso:

We've seen scenarios where patients are not getting the proper preventative screenings and are subsequently finding out down the road that they have late stage cancer because of that. And so it's very important that it's not just about collecting gender identity information, but it's also about how do we take this information? How do we take the anatomical inventory information and use this information within clinical decision support systems to help guide the clinician into the services that the patient is due for? And you're exactly right. When I often talk about this work, I often use the precision medicine terminology, because to me, this is really about what precision medicine's all about. It's not about looking at things at a population health level, it's not saying women between this age need a cervical pap screening. It's saying people who have a cervix should be due for a cervical pap screening. And so we really have to reframe and rethink the way that we're caring for patients, and it's not just a technical issue, but it's also a quality care issue as well.

Charlie Harp:

And I think especially when you consider concepts like social determinants of health, poverty, and education can affect someone's ability to receive care. So can stigma/ Carol.

Carol Macumber:

Yeah. I think part of it along the lines of what Chris was saying, that data quality issue at the point of capture, self reporting just permeates into things down the clinical care workflow and operational process. For example, talking about quality in terms of quality measurement, NCQA or the National Committee for Quality Assurance, they produce HEDIS or what's the long name, Healthcare Effectiveness Data and Information Set. That's used to evaluate different payers and programs. And it covers, I think roughly 200 million people at this point, are enrolled in plans that report HEDIS results, making it one of healthcare's most probably widely used performance improvement tool or system. They cover six or plus more domains of care utilization for all of those measures. Individuals with non-binary gender are currently excluded from HEDIS utilization measures that currently require a specific gender, a binary male or female, and NCQA, to their credit, recognizes this as an issue, but without the kind of change in legislation and the standards that they're basing and the clinical guidelines that they're basing their performance measures off, they're waiting and saying, we're continuing to attract industry standards for non-binary gender.

Carol Macumber:

In other words, the guidance provided and out of the Gender Harmony Project in other areas will help improve representation of non-binary gender individuals through measurement also to ensure that they're being recognized and being factored into those performance measurements. Further, I think, and Chris can probably talk about this too, and we look at the use of sex and gender and things like payment for care. We've heard through the lived experience of folks participating in the Gender Harmony Project, but also via Chris and others who are on the front lines that often, unfortunately, because of system, because of technical limitations and sometimes those driven by the standards underneath them or the mandates by the government in place, in whatever jurisdiction they're at, of having to do things like switching sex fields back and forth.

Carol Macumber:

Obviously that switching sex fields back and forth, could trigger hundreds of warnings and messages and all these other things that only further contribute to the alert fatigue that I'm sure many clinicians are already facing. So addressing this, the challenge and the longstanding problem that people have recognized, but have not to date been able to truly address in terms of the conflation of administrative sex and clinical sex and gender and systems, and the fact that those were often a binary representation of just male or female and the use of things like other and differentiated values to represent diversity will have the potential to make quite a difference to a number of people, millions across the world.

Chris Grasso:

This is where a lot of the work that's happening with HL7 Gender Harmonies Group, and a lot of the national groups and standard groups is so critical because it's really about designing these systems too, not just for now, but for the future and understanding the ways that people identify now is not how people identify five years ago and is not how people are going to identify five years from now. It's really about designing the systems to really be flexible and agile, to handle those changes and adjustments over time. And oftentimes we hear people say, we need to figure out how to collect this perfectly and what I always say to them, let's not let perfect be the enemy of good here. It's really about setting up the infrastructure. And that's where the informatics piece of this is so important because oftentimes people will report a point to the data collection systems as the barrier.

Chris Grasso:

Oftentimes that's really not the barrier. It's more the people who are the barrier. And so this is where I think technology and health information technology can really help be a driver and really move care forward for the transgender and gender diverse individuals. I also want to say to your point too, Charlie, around issues around health equity and disparities. And again, this is where I think we have such an important piece to play here and that we know that there is disparities that are happening within the transgender diverse community. And we know that it's even greater when we look at those with intersecting identities like black and African American feminine individuals. And so this is where we could really help collect those data and really help in make informed decisions around care and really try to close some of those gaps in care.

Charlie Harp:

Absolutely. And one of the things that I like about what's happening with this initiative too, is in healthcare, we have a long history of everybody coming to a solution in their silo and then having to struggle with interoperability in the aftermath of that. And so one of the nice things about this initiative is that we're answering a lot of those questions of how does it fit into the payload of something like HL7 FHIR, and what are the values we're starting off with and how do we represent those things? Because as people that are developing systems are grappling with this type of information, it's good for them to have something to look to, because for us to be able to share information in a meaningful way in healthcare, we need to know how to package it and we need to know we have codes for it. It's just the nature of the beast. So we talked about the why, I don't know, Carol, if you want to talk a little bit about the process that you all went through to design and develop the standards and the terminologies to support this initiative.

Carol Macumber:

Sure. So the HL7 Gender Harmony Project came out of a process, a working group meeting back in 2019, when the Vocabulary Work Group was asked to work with the other interested parties to expand the long standing administrative gender HL7 V2 tables to account for states. I think at the time it was California adding non-binary to the list of valid values. So in this case, terminology was driving or was the barrier to accurate capturing of those legal documents and persistence in the systems in which those individuals were seeking care as they were using their driver's licenses to present their legal sex. And from that process, we were encouraged by leaders at HL7 and in various organizations that have a vested interest in ensuring that we addressed the longstanding issue of sex and gender being ambiguously defined and exchanged and captured via this project.

Carol Macumber:

So with this board with the ONC and others, the Vocabulary Work Group project was sponsored and approved by HL7, as an official quote unquote thing, and Gender Harmony was born. Our first task was really to assemble participants and experts in the field. And that's where I was lucky enough to meet the two individuals who are on the phone today. We are very, very proud of the level of participation that we've been able to gather from external SDOs, including DCOM, IEEE, NCPDP, government officials from the US, Canada, Australia, others, technology vendors like Epic and Allscripts, other vested interests within the USAMA. But also, and probably most importantly, people who actually are living the experience and from the LGBTQIA plus community, as hearing those stories and really understanding how things like the terminology we use really impact the way that they are perceived and feel and are treated in what can often be just a very clinical removed and uncomfortable, if you think about it, in your interaction with the healthcare system.

Carol Macumber:

It's not always a pleasant experience to begin with, there's a reason to be there. We learned through those conversations and their participation, really what terms would be embraced by the community to help drive where we went with the value sets. But I'll back up just a little bit in terms of, we also had to step up and determine what would our logical model be. So the output of the General Harmony project to date has been an informative specification that went through the ANC process at HL7 to provide a logical model for folks to start to try to consume and understand. It tried to address things like separating administrative sex from clinical sex by representing them as two separate elements.

Carol Macumber:

So we have within this logical model, different elements that include recorded sex or gender to capture things like sex, assigned at birth, gender identity as its own elements with its own value set, supported by terminology and a sex for clinical use, which clearly is attempting to solve that issue of conflation of administrative and clinical sex, so that you can have one that is meant for and meets the criteria for administrative purposes while not utilizing that for things like clinical sex determination and GFR rates and other things within the clinical spectrum that really should be determined by things like organ inventories and so on.

Carol Macumber:

Since then, the group has published a JAMIA article, has done interviews across the board with things like ONC's Hitech, with the VA and other places to really start the next set of conversations as we move to phase two and the future that will result in more specific implementation guidance, so that people really understand okay, you've produced this logical model, you've talked about the reasons why, you've talked about the theoretical impact, but what does this really mean? Writing CCDA, I'm writing and consuming FHIR. I'm sending B2 messages. How am I supposed to represent these things in those various standards?

Carol Macumber:

The next phase of Gender Harmony, which we were lovingly referred to as Gender Harmony 2.0, is exactly that. We are currently planning to ballot that cross paradigm implementation guidance, which touches upon FHIR and V2 and CCDA and the terminology here in September. The other thing that the logical model I think does to improve our ability to accurately represent that lived patient experience and the reality that the information and somebody's gender identity, their sex for clinical use, the pronouns they prefer to use, the name they prefer to use, and the recorded sex or gender on any sort of documentation. The reality that those things change over time and have context is something that we couldn't support in systems with the standards and the terminology that was in place.

Carol Macumber:

So one of the major accomplishments, I think, and advantages of the logical model that was presented as part of the first piece of the Gender Harmony Project is that each of those elements not only can be one to many and support one to many, but they also have a duration that provides the ability for a system to note a validity period, along with the ability to provide additional context in a string where the comments can be made or linked to other clinical observations.

Charlie Harp:

As these new standards around gender identity emerge, when is a good time for someone who's developing a system to really start making the changes. Because I know a lot of people that are developing systems, whether it's analytic systems or EMR systems, they are concerned about adopting a standard and then have the standard change and then having to do the catch up. When is the right time for someone to get on board and start adopting it?

Janet Campbell:

Speaking as someone who has gone through the process not just of capturing more of this information in the EHR, but actually using it throughout the EHR, I would say that unlike many other standards initiatives, this is something you cannot start early enough. When we determined that it was appropriate to not just capture this information, but to use that information throughout the system, we created, and that was in 2018, we created what we call a company-wide initiative, in which we took representatives for every single product across Epic and brought them together to say, we would like you to go back in the system and for every instance that you used a field called sex, determine if you actually meant the patient's legal sex, the patient's gender identity, the patient's sex assigned at birth, or perhaps something else, perhaps something about the patient's anatomy. And for every place in the code that references that information, update it to point to what you actually meant.

Janet Campbell:

And that amount of research that goes into a project like that and the number of lines of code that were changed is staggering. I don't think we really realize how much we use sex and gender to identify people and throughout the system, for the most part, when we said sex, quite often, we were using it for display purposes. And what we really meant was gender identity. Not only that, it's difficult to just implement a more thoughtful display of gender identity throughout the system without also updating to support the patient's chosen name. And so that's another area where throughout the system, you may have used the patient's name in millions of contexts and having to go through each of them and determine if you meant the patient's legal name, or if this name was going to be used to refer to the patient in the patient's presence. That's another really thoughtful exercise that needs to be undertaken.

Janet Campbell:

I would say about it took us a few years to go through this entire process. And even if you're not exactly sure what the exact terminology will be, or if you go through and find a few instances where you want to wait for the standard to shake out, the amount of research and the amount of organization that goes into that research is something that can and should be begun today.

Charlie Harp:

I think it's an excellent observation. People probably take for granted when it's one thing to add data to a system, but especially with systems that have longevity, systems that have been through evolutionary cycles over long periods of time. It's not just adding the data. It's making sure that you understand all the places where that data is being used, because you could add those fields tomorrow, but it wouldn't have the desired effect if all the places where the data was relevant, weren't updated to reflect that. So that's a good cautionary tale, Janet, that it's a non-trivial effort when you change something as fundamental as that in the system.

Janet Campbell:

And as I mentioned before, in addition to just adding those fields, once people document in those fields, and once you start asking patients what information they would like documented on their behalf, there's an implicit assumption that you're going to use that information in an intelligent way. So if you ask the patient the name that they'd like to call be called by, or the pronouns that they use, and then you continue to refer to them by their dead name or by the pronouns that they didn't give you, that is a missed promise as far as patients are concerned. And likewise, if you document patients information about a patient's anatomy and then don't subsequently use that for clinical decision-making, that's going to make users really confused. So it's difficult to add just documentation without that more thoughtful understanding of how that information is meant to be used throughout the system.

Charlie Harp:

Absolutely. And we are guilty of that sometimes in healthcare, where we put the burden on people to collect or provide information maybe more than once. And then we don't actually leverage the information and that's incredibly frustrating and definitely impacts the quality of the data, which is ultimately driven by the people that put it in the first place. Chris.

Chris Grasso:

Yeah. And this is really a critical point here in that what's happened in the past as organizations like Fenway who have a very large number of transgender diverse patients that we care for. We care for nearly 5,000 transgender, diverse patients annually. We've had to basically jerry rig our systems, for lack of better term, to really collect both collect these data and actually try to use them across our entire system to care for our patients. And so to Janet's point, this is where it becomes absolutely critical for EHR vendors or any health information technology vendor to really begin this process, because what happens is in places like Fenway, we have to make these homegrown changes and then changes subsequently come down further down the line and we have to go back and recollect things and rejigger things.

Chris Grasso:

So we can't start this process soon enough. It's really critical for vendors to be a part of this process and really work with their customers and really engage in that expertise that they have to offer around caring for patients. And it's not just important for places like Fenway who have a large number of patients that they care for. It's actually probably in some ways, even more critical for some organizations that have fewer transgender diverse patients, because this is where so many of those mistakes happen that Janet referred to, where people are getting dead named or getting mispronounced. And we know the end result of that is that oftentimes people never come back for care. If you show up to organization and you use the wrong pronouns or use the wrong names and you apologize, and this keeps happening over and over again, your apologies are only so good and people are not never going to come back for care.

Chris Grasso:

And so this is where it's so critical for health information technology to really sort of step up to the plate and they could really sort help prevent some of those mistakes from happening. If we're doing a good job of actually collecting those data and actually making those data available and visible to people who are providing care. And I don't mean that just for the clinician, but I mean that for the front desk staff as well. And I also want to emphasize this is where the work of the HL7 work is so critical. Because again, this goes beyond just caring for a person in your organization. This is really about helping a person across the entire health ecosystem. So a place like Fenway, we're a primary care organization. We don't have a lot of specialty care. We often have to refer people out to see a cardiologist or pulmonologist or whomever.

Chris Grasso:

And so we want to have that option of being able to share that person's name and pronouns with that specialist so that when that patient shows up for care, they don't have to go through that process of providing their name and pronouns all over again. And then the other point I want to emphasize around what Carol said too, is that we know that this process of people sharing their information around gender identity, isn't a one time situation and that this may change and evolve for people over time. So it's so critical to be able to ask this question and be able to document this question and almost think of it like a vital sign. And that's how we've really talked about it, because this is really something that is going to change for people and evolve over time. And we know that particularly even for younger generations, we know that this is even more evolving. So we want to be able to accommodate that going forward.

Charlie Harp:

Carol, does the model have an inherent time stamp? Because I would think with interoperability, if we start sharing information and the information changes over time, you could be in a situation where one person's data might be older and could conflate the current state of the data in someone else's system.

Carol Macumber:

Yeah. At that data element level and the logical model, there's a duration, which is captured as a validity period. I think for the resource itself, there's your probably typical daytime stamp on it being exchanged as part of in FHIR, for example, the patient resource and whatever provenance is associated with that resource.

Charlie Harp:

So where are you capturing this? Is it an observation resource?

Carol Macumber:

It varies, and part of the cross paradigm IG is to get community feedback in terms of the validity of the approach. And so right now, the way that it stands, there are currently extensions on the patient resource and FHIR. There is also a implementation coming out of gravity that would capture it as an observation. And so part of the cross paradigm IG is to present both approaches and to get the community feedback via the official ballot process, to determine which of those approaches in terms of sex or clinical use being a expansion and captured via that extension, versus it being captured as an observation.

Carol Macumber:

Obviously tying those elements together across resources will be a variable that people will have to take into account as to how it's best to represent these at an implementation level. The logical model coming out of Gender Harmony doesn't dictate that. So part of it is allowing the experts in each of those HL7 product families to help determine what the best way is to represent the information and do so in a way that's interoperable across the HL7 product families.

Charlie Harp:

As an engineer. I would just say that consistency breeds success. If it is going to be something that can have a time period, that's got to be something like an observation. It can't be a static field with a state like biological or sex at birth might, or date of birth, something that is resolute. The other question I have is I'm assuming that this information, since we're injecting a new data into the concept of the patient, do we consider this to be part of protected information under HIPAA?

Janet Campbell:

Yeah, because the wrong set of people?

Carol Macumber:

Janet, that was a great way of saying so we punt specifically on a few questions and one of them really is around security and privacy because that's a much broader topic than just around sex and gender, and the law and rules around which things are protected and are not is not in the purview or part of the scope of what we've been focusing on. Although we absolutely recognize that there is a need to evaluate these new elements if they were to be put in place for reasons such as somebody might not be living their gender identity at work or at home. And you don't want that information to be shared with parties without your consent. We leave that to the security and privacy experts.

Janet Campbell:

And one thing I'll add to that is that in our exploration of this challenge and our implementation throughout the system, one of the things that became obviously clear is how much we rely just naturally as humans on information about gender and information on names to help us identify people. It is something that is built deeply into our core as humans, weirdly and as such. Our recommendation to organizations was that if the patient is not yet living this gender identity or is not living under their chosen name, our recommendation is not to document that information in those fields in the system. Because when you tell the system that this is the gender by which the patient wants to be addressed, and this is the name by which they want to be addressed, the system will take your word for it and will put that everywhere. And that's not even just a technical means of attempting to hide this information from parents in the patient portal, for example.

Janet Campbell:

We could try to hide it there, but the next time someone calls this patient's name in the waiting room, or the next time someone calls about this patient and asks to speak to their parent and uses a name that the parent didn't expect, that's going to be a problem. So our recommendation is that to the extent that this information is meant to be kept private, put it in a private place. If you know that the patient is now living this information, then it's okay to document it in the place where it will be used throughout the system.

Chris Grasso:

And if I could add to that, and while there's some debate of whether or not this is protected by HIPAA, when we speak to healthcare organizations and we train them on providing culturally competent care, we always recommend that they treat this information like they treat any other protected information. Just like you're not going to talk about somebody's getting a divorce, or somebody has diabetes, or what somebody's income is for that matter. We shouldn't be discussing anybody's gender identity when it's not appropriate to their clinical care. This is just good professional clinical behavior. And I think this is where again, I get back to thinking about not letting perfect be the enemy of good. And I think this is something that many healthcare organizations probably also need to reflect and make a decision on what works best for them. Many health records at this point have a place to collect an additional name.

Chris Grasso:

So a place like Fenway, we are very conscious about making sure that we're using the correct name with our patient and asking them whether or not this is the correct name to be using just not only within our facility, but outside of our facility as well. And so I think this is where we need to continue to evolve electronic records, to actually collect information about whether which name we should be using with the patient, whether that's while they're getting care within external communications and such.

Chris Grasso:

We've modified some of our external communications to actually remove some names so that when things go out, we're using just a generic, like dear Fenway patient, so that we're not incorrectly naming individuals, because some people are using one name inside of Fenway and using another name outside of Fenway. So we just need to be very careful and thoughtful about that. And this is a conversation that it's important to have with your patients and to understand what is a correct name to be using outside of your organization. And again, this is where we can continue to evolve and make sure that we have accurate information from the patient and around this topic.

Charlie Harp:

Excellent point. What do you think is the future? So Carol, you talked a little bit about Gender Harmony 2.0, but along with things like anatomic inventory and things like that, what do you think is the future of this type of information?

Janet Campbell:

One of the things that we've learned as organizations have adopted this functionality in Epic using the EHR is that the ability to have and use this information is hard, but it's a manageable problem. Trying to navigate how to communicate this information across system borders is where the real challenges emerge. And I can give you an example of that. Let's say we have a patient who comes in for a hospital stay, Evelyn. She's on the patient list. As Evelyn, her chart shows up as Evelyn, when someone goes to administer her a medication administration record that has Evelyn on it. And of course we print her a wristband with a barcode on it that identifies her as Evelyn, a female. And let's say she may need to receive blood at some point. Well, blood bank systems, due to a number of different reasons, will record legal name and legal sex.

Janet Campbell:

We wouldn't ever want to be in a position where Evelyn was not able to receive a blood transfusion that she needed because her demographics didn't match what was in the blood bank system. And so as a result, we might need to update her wristband to put her given name on there, her dead name. We might need to add the gender that doesn't apply to her. And now we're in the situation where we may have to reflect that information even further upstream on the medication administration record or even on the patient list, which is going to affect what people call Evelyn. Even worse. She's in a scenario where every day she wakes up, she's in the hospital, she's already frustrated or scared or worried. And then there on her body, on her wrist, she's reminded of an identity that does not match who she thinks of herself as.

Janet Campbell:

And that's probably the worst case scenario. So as my goal for the future of this project is that the Gender Harmony Project will allow us to communicate all of the important information about Evelyn across multiple system borders. And that these systems themselves can then determine what information they need in order to display Evelyn's name, her gender, any other information that they need for other reasons, but essentially that we can get to a point where we're not having to make a decision about which identity fits Evelyn best. And we can just share all of the information that we know.

Chris Grasso:

And I really get back to one of the points we talked about earlier in that we really need to be thinking about moving towards this whole concept of precision medicine. And then people have one thought about that. But to me precision medicine is really about caring for the individual in front of you. We're increasingly collecting more and more data on patients. And so this is really at the cusp of being able to use this in a way that we're really thinking less about this at a population level and more about the individual level. So it's about names, it's about pronouns, but it's about taking an inventory and integrating into the system. It's about taking other data from the system and incorporating that and caring for the individual patient in front of us. It's about being able to connect the dots between your primary care provider and the specialist that the patient is going to see.

Chris Grasso:

Even thinking just about expanding beyond the HR. What about our patient portals? How can we really begin to even think about making them really an area where we can engage patients more? Right now we're doing a lot of pushing information, but can we think about when a patient opens up that app or that patient portal and how much can we really tailor that to that patient's experience? So I think it's an exciting time to be involved in being engaged in health information technology in the standards world. I think this is the point in time where people are working together in a way that they've never worked together before. And I think as things are evolving in this country and some areas are progressing and some areas are not, I think this is where I feel like technology really can continue to be a driver in closing some of those gaps in care and caring for populations who've been in invisible and for years at this point.

Charlie Harp:

I think that's a great point, Chris. I think it's interesting when people talk about precision medicine, I see a lot of people that think that's all about genomics and I'm like, I would be perfectly happy if we could accurately create a digital representation of the patient that is current, correct and relevant. And so it can go from demographics to DNA, but just having a current precise picture of the whole patient, as much as we can so that the software, the healthcare information technology that we're investing in can actually do something meaningful and helpful and augment the human provider and not just be a replacement for a piece of paper. So absolutely. And I think that what you guys are doing, what you guys have done is an important part of that. Any closing thoughts or anything else you guys want to throw in before we wrap up today?

Janet Campbell:

I think one thing that I find especially valuable about this work is that it's not just transgender patients who want to be called by a name that's different than the name on their birth certificate. And it's not just transgender patients who maybe don't have ovaries, even though we might expect them to, or have different anatomy than what they were born with. And the work that we're doing here will benefit the entire patient community. And that's something that's really exciting.

Charlie Harp:

Exactly. It's about doing a better job of having the patient feel like the systems that we're using to treat them, know who they are.

Chris Grasso:

I think it's really about moving away from assumptions and how people present and making assumption about how people present about the anatomy that they have. And as Janet was saying, this work that we're doing really benefits everyone. That's something that we talk about as we do trainings with healthcare organizations across the country. And we talk about looking at the forms that they're using and modifying some of the visuals that they have in their waiting rooms, for example, and actually moving more towards gender neutral diagrams, for example, or even your registration forms.

Chris Grasso:

As Jen was saying, we encourage people to ask everybody the name that they use because oftentimes, maybe your given name is not a name that you don't like to go by because maybe you were named after somebody in your family that you don't like. So we don't want to make assumptions about that. And even similarly thinking about how families are evolving and changing, moving away from assumptions that everybody has a mom and a dad, some people might have two mothers or two fathers or they might be raised by their grandmother. So we just need to be really thinking about this work in a much bigger way going forward.

Carol Macumber:

I think right now we're in a really optimistic state. And since the Gender Harmony Project started, we've seen progress in so many different areas, not only in the US, but also internationally. We saw the US Preventive Services Task Force come out with a pretty strong statement that them they're recognizing that the language used in their sex specific recommendations, which are evidence based recommendations on clinical preventive services, need to be more clear and consistent so clinicians and patients can effectively and respectfully apply these recommendations in practice, that they're committed to the whole idea of promoting health and equity in diverse populations, including those that are based on sex and gender. We've seen a report come out from the US Census Bureau on how it's best to collect section gender information. We've been engaged by the ONC and in the elements that are in the Gender Harmony logical model have all been either included in the V3 draft because things like gender identity were already in, or as new level two elements.

Carol Macumber:

We have our partners in Canada via Canada Health Infoway who have a section gender workshop, who are looking to align with Gender Harmony wherever possible. We've got folks in Australia, Queensland Health's health and gender work group that are also engaging us every few months to see where we're at. And also at a ISO level, there's a section gender in EHR's task group under I think TC two 15 or one of the others that are also working across various international standards, development organizations and all of those things. They're just great examples of how people are moving forward in terms of disambiguating between sex and gender and ensuring that the diverse population is represented and can receive quality healthcare. And because we're terminology nerds, you and I, Charlie, it's also nice to see that at the base of the terminology work, we were also able, within the lifespan of Gender Harmony to make progress in improving the standards that are used internationally, including SNOWMED, where we've through both the NLM, the US National Release Center and Canada Health Infoway. Canadians extension is add concepts to more accurately represent gender identity.

Carol Macumber:

We've been able to work with the folks at Reading Street and No.Inc to include link codes to represent the elements, like sex for clinical use and recorded sex or gender, along with them creating answer lists that align with the value sets that we're recommending. And also obviously internally with HL7, where we are developing HL7 terminology content, where it's more appropriately done within the implementation guide.

Charlie Harp:

Carol, if somebody that's listening was interested in getting more involved, more directly involved or learning more about the initiative, where would you tell them to go?

Carol Macumber:

We meet every Monday at I think it's 4:00 PM Eastern, and those calls as all eight till seven calls are open to any interested parties. You don't have to be a HL7 member to participate. In fact, I think as I mentioned earlier, we're really proud of that this initiative in particular, because we have a lot of non HL7 members who have committed a significant amount of time to attending those weekly calls and others that have spun off as sub calls. From there and via the HL7 webpage and conflict pages, you can find additional information on the particulars of the Gender Harmony Project and all of the artifacts that we're producing. We welcome anybody's participation as we definitely welcome a diverse group to ensure that we are representing both the lived experience and all of the expertise out there in developing standards.

Charlie Harp:

One of the reasons I fell in love with healthcare years ago was that I really liked the fact that it was just a job that my work resulted in something that could actually help people. And I want to point out to any of those listening that may not realize that the work that the folks do within these standard bodies within these committees, by and large, is something they do as a labor of love. It's not something you get paid for. At least I don't pay Carol to do it. And so I just wanted to thank you all and the rest of the folks that worked on this initiative and all the initiatives for all the hard work, energy, and thought that goes into the development of these standards. And that's a wrap of this episode of the Informonster Podcast, special thanks to our guests today. Carol Macumber, Janet Campbell, and Chris Grasso.

Carol Macumber:

Thank you.

Janet Campbell:

Thanks so much.

Chris Grasso:

Great. Thank you.

Charlie Harp:

I'm Charlie Harp, and this was the Informonster Podcast.