Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud.

In these podcasts, you get to listen in on my conversations with some really remarkable people, hearing what health literacy is, why it matters and ways every one of us can help improve health understanding.

Today, I’m talking with Dr. Ralph Vetters who is the site Medical Director of the Sidney Borum Health Center, which is a program of Fenway Health in Boston, Massachusetts.

He is a graduate of Harvard Medical School and trained as a pediatrician at Boston Children’s Hospital and the Boston Medical Center.

The Sidney Borum Health Center focuses on caring for youth who are alienated from the traditional healthcare system. That includes LGBTQ youth, street youth and homeless youth.

Welcome, Dr. Vetters.

Dr. Ralph Vetters: Thanks. It’s a pleasure to be here.

Helen Osborne: I have been hearing and reading more and more these days about issues of gender identity, and that seems like such a shift from not so long ago.

I know the term is out there, LGBT, and sometimes with a Q at the end or not. What does that term mean? Then I want to hear more about how it affects the work we do in health communication.

Dr. Ralph Vetters: LGBTQ is an acronym that has developed over a period of decades to provide a safe way of describing the realities of life for a large number of people in the country. The L of course is for lesbian, G is for gay, B is for bisexual and T is for transgender.

Q is for queer and questioning, which is a way of allowing space for those people who don’t really find that the other letters describe them well.

These are people who have a more fluid gender feeling, are less constricted in a sexual orientation or are trying to figure out where in the world they’re going to eventually line themselves up. It’s a way of catching a large number of people.

Unfortunately, it pulls into one single phrase a whole bunch of people who are entirely different from each other.

Helen Osborne: I know. As you describe it, that’s really huge there. Then you’re focusing on youth, right?

Dr. Ralph Vetters: That’s right. I get to deal with those kids who are going through pubertal changes, the developmental changes of adolescence and the time in their lives when they’re trying to figure out how they should act as sexual beings and how they should move forward in a world that’s gendered in a variety of different ways.

When you add the fact that the LGBTQ moniker is in and of itself hugely complex and disparate, and then you plunk down all the things that happen to youth that are moving through those particular letters, it gets pretty complicated.

Helen Osborne: Wow. An image that I was told is that it’s really a continuum these days instead of being identified as male or female. Those are the ends of the spectrum, but there’s a whole lot of stuff in between. Is that another way to visualize this and capture the image?

Dr. Ralph Vetters: Yes, because there’s a phrase that is used more commonly, and the phrase is gender queer.

Helen Osborne: Is that an okay term?

Dr. Ralph Vetters: It is now. It took me years to get comfortable with it as well.

Helen Osborne: I remember growing up a long time ago that queer was something you don’t say.

Dr. Ralph Vetters: I sense it’s a fairly classic guerilla technique. You grab the phrase of injury and you take it back as your own tool.

It’s essentially a phrase that is used by people who are trying to say, “Don’t even try to put me in the LGBT box. I don’t want to be told that I’m male. I don’t want to be told that I’m female. I don’t want to be told what my sexual orientation is. I’ll tell you where I am from moment to moment.”

We’re trying to figure out more of what that actually means because if someone tells us they’re gender queer we don’t know what that means in terms of health outcomes, your health risks or how stable it is as a phrase. It’s something which is kind of newer, I think.

Medical practice has only recently gotten comfortable with the idea of asking on their intake or registration forms whether someone is gay or lesbian. Even now, they’re rarely but starting to ask people what their preferred pronouns are.

Helen Osborne: What I’m hearing from you is just opening up a whole lot of issues in my mind. You have the medical issues. For you, as a doctor, what physiologically do you need to be dealing with, with this person you are working with?

Then for the rest of us who are not physicians, I have a whole lot of questions and want to hear from you what we can be doing.

You already talked about issues of pronouns, intake forms, wording and what’s okay and what’s not okay.

Maybe you could just spend a moment on the physiologic because that’s not most of us do, Then talk with us about how we can be helpful, respective and inclusive in health communication.

Dr. Ralph Vetters: I think the interesting thing is that there have been a couple of fairly sophisticated studies asking LGBT youth what they want out of a doctor’s office essentially.

Unsurprisingly, they want what everybody else wants. They want a place that’s clean. They want a place that’s easy to schedule to get into. They want their clinicians to be trained and high quality, and they don’t want to be treated as if they’re dangerous or bad.

At the same time, however, LGBT kids do have increased health risks, and providers and the people who care for LGBT kids need to be aware of the increased health risks, such as greater likelihoods to smoke cigarettes and then there is actually a greater likelihood of pregnancy. There is an increased likelihood to start alcohol before their peers.

There are a lot of health risk behaviors which are probably associated with the stresses of a LGBT identity, either revealed or unrevealed, that we need to know in order to provide the appropriate interventions and risk behavior counseling.

Helen Osborne: That doesn’t even get into issues of transgender, which is a whole other issue of physiologic changes.

Dr. Ralph Vetters: That’s right, because for transgender kids, we’re talking about not only the biological changes that they’re undergoing because of puberty, but the cognitive and psychological changes as they develop secondary sexual characteristics, which are in opposition to the changes that they truly feel is in their core.

That duel between their body and themselves can be just extremely debilitating.

I have my patients come in at 14, 15 and 16 years old and they have just now begun to talk about gender with their parents. Luckily, their parents are bringing their kids to me to say, “How can I keep my kid happy, alive and healthy?”

A large part of my work with the trans youth is also with their families not only to provide and think about ways in which transgender hormones might actually bring the physiological changes and their body changes in line with their psychological and gendered selves, but also so that families can think about safety and support of their transgender child at school, at home and in the world at large.

Helen Osborne: I’m so glad that there is a place like your health center for dealing with youth and dealing with all of these issues. Probably a whole lot of the population doesn’t have access to yours.

You are a leader. I’m from Boston. I know the Fenway Health Center has always had a fabulous reputation for being more inclusive.

What have you learned that listeners everywhere, wherever we’re practicing in the world, whether we’re clinicians, public health folks or everyday people, parents and kids alike, can be doing to improve health communication?

Dr. Ralph Vetters: I think part of it is to know the nomenclature, how to actually speak the language and that there’s a difference between gender and sex.

Sex is a biological construct. It’s the function of your genitals and how those are identified at birth, so that’s frequently how we’ll describe transgender people. We’ll say, “This is a child who was assigned male sex at birth because they have a penis and testicles.”

You have to make a distinction between that and gender. Gender is a social construct which represents how someone represents themselves in the world along the spectrum of what is available to us as male or female.

Sex and gender are totally different things. They actually have different developmental processes over time as kids grow up.

Then those two things are entirely different from sexuality, which is a question of who the people are that you are sexually attracted to.

I had one of my first patients when I got started working at Sidney Borum. A young man with a beard came in and we were talking about what he needed to get done that day for his physical. He was going to move out of town and wanted to get things set up before he left.

I was going through all of the typical things that you need to think about, like vaccinations and asked, “Have you had your tetanus shot?”

Then he said, “I probably should get a pap smear too.” I was thinking, “What? Really?” Then I realized, “Oh, this is a person who was assigned female at birth but has been taking hormones and identifies as male.”

Then additionally he said, “Can my boyfriend be here too?” His boyfriend was someone who had been assigned male at birth, identifies as male and they both identified as gay, that is men who are sexually attracted to other men.

Helen Osborne: Dr. Vetters, there’s a concept in health literacy, which our listeners are probably more savvy about, called “you can’t tell by looking.” Even in health literacy you can’t tell, but certainly in your practice it’s not even obvious to you even after you’re just begun working with a patient.

Dr. Ralph Vetters: You have to ask, you have to be respectful and you have to know the differences, which is that sex is not gender is not sexuality.

We conflate those concepts, and conflating those concepts can actually do harm to a patient because either you fail to realize that you need to do a pap smear for this patient or you create an environment where that patient says, “This person doesn’t know me, doesn’t respect me and doesn’t care about me.” Then they go without getting the important healthcare.

Helen Osborne: You’re farther along in working with this world than I am and probably than a large number of folks who are well meaning and we want to do the right thing. If we forget and screw up some of those terms, how bad is that?

Dr. Ralph Vetters: It’s only bad if you fail to say you’re sorry and fail to correct yourself.

Helen Osborne: All right.

Dr. Ralph Vetters: Parents will come in with their kids and they’ll be what we call mis-gendering their children, but then they’ll say, “Excuse me, I meant she.” They’ll correct themselves and that’s the key thing.

You just say, “I’m sorry. I’ll get there,” and you correct yourself. It’s that openness and it’s that ability to say, “I’m trying to listen. I’m trying to reflect this back to you.” That makes the biggest difference with this population.

Helen Osborne: Thanks. You also just talked about that issue of gender. That seems to be a big one these days. I’m even seeing the dictionaries coming up with a new preface like Mr., Mrs., Ms., and now Mx., which I think falls in there. What do we do about pronouns and our usual word choice?

Dr. Ralph Vetters: That is changing rapidly all the time. We’ve created certain forms that allow us to check off boxes and as soon as we do that there’s a new terminology that’s coming in.

There is a growing interest usually for people who identify themselves as gender queer to use pronouns like Zer, Ze and Zers. They substitute the Z for the H and the S in the traditional pronouns, and it’s creating a new language for what they see as a new world.

I confess I have a hard time with that. It’s hard for me to remember to say that, but, again, to make sure that we create the opportunity for the fluidity of that is what is going to allow these patients to be engaged and connected in their health.

They’re going to be asking questions. They’re going to be demanding the preventive care that they need or the acute care that they need.

Anyway, it forces us as a system to adjust in such a way to give them the space they need.

Helen Osborne: When we talk about system changes, I know something very common in all practices is the health history. It always begins with name, birth date and gender, male or female.

For those of us who can make system changes throughout an organization, what would you recommend we do on that standard introductory health history form?

Dr. Ralph Vetters: Generally, as a population, we like things to be very clear, either/or, male/female, and it also lends itself to better data collection if you can just put an X in a box and then it goes into the computer. Probably what we need are places for people to write phrases and descriptors.

Instead of checking a little box M and F, you ask, “How do you define yourself?” or, “What pronouns do you prefer to use?” or, “What sex were you assigned at birth?” so that we create a more fluid space in the very first input for this population to really be able to express themselves.

There’s a new phrase for you, the cisgender population.

Helen Osborne: What population?

Dr. Ralph Vetters: It’s the cisgender. They are people who were, for example, assigned male at birth who continue to accept the male gender or people who were assigned female at birth who accept and portray a feminine gender. Cisgender is in distinction to transgender.

The adjustments and changes don’t ice out the cisgender population, but they open it up and make it easier for the transgender population to come in.

You have to train everybody from top to bottom in the system. The front-desk people need to be taught how to ask the right questions and how to respond to the responses they get from both trans and cis patients.

The data people have to be able to construct forms and algorithms that collect those data in ways that become useful and can be used to sort patients by lists.

The billing people need to come up with the right billing codes that allow us to perform services and provide treatments and still get reimbursed for it.

At the other end, we have to be able to, according to meaningful use standards in the Accountable Care Act, provide information directly back to the patient about what was done for them at a particular day and moment and to make sure that they have access to their medical records in ways that respectfully catch and display these data.

Helen Osborne: Wow. There’s just so much. People listening to this podcast may be responsible for creating health materials. I want your recommendations about that.

The other questions that concern me are for those of us who are not as far along as you are. How in our non-words can we be respectful and inclusive?

First, it’s the documents and then kind of who we are as we’re dealing with the changing world around us.

Dr. Ralph Vetters: Some of it is demeanor. I had a patient the other day who identified as cis male who said, “I don’t want to have to see another doctor. I’ll have to explain it all to them and they’ll just give me the face.” I said, “The what?” He said, “The face,” which is this sort of wide-eyed, drop-jawed, “You’re a what?” sort of thing. It’s almost like The Three Stooges.

He says that that’s what happens to him over and over again with other providers. When he finally says, “No, I’m gay,” he gets “the face.”

Part of it is that our interactions with our patients have to be constantly open and respectful. We have to be able to avoid “the face” to make sure that they’re willing and comfortable to tell us their health history and to tell us about a behavior that we can help them understand as dangerous or risky. If they’re worried about “the face,” they’re not going to talk.

Helen Osborne: He did us all a lot of good. I like that image of “the face.”

Just briefly talk about our documents because we’re not going to go through all of the ways we can deal with documents right now through the written words. We’re dealing with our nonverbal words, but what can we do with the written word to be respectful, appropriate and inclusive?

Dr. Ralph Vetters: Partly, it’s to understand and make clear the distinction between sex, gender and sexual orientation.

Then make sure that range of options is there so that if you have a health form that you’re asking people to fill out ahead of time, it has to include the broadest range of options. If you’re using documentation that limits it in any way, then you’ve again frozen out that population, so that’s a key point.

Then you have to make sure that it’s as open to the cis population as it is to the trans population. That gets tricky in part because frankly the cis population doesn’t understand the nomenclature as well as the trans population does.

To some degree, a good part of the successful approach is educating your cis population and making sure that they themselves are feeling included and comfortable.

It’s one of those odd things where the majority begins to feel edged out by the minority simply because all of a sudden the minority is visible.

Helen Osborne: I do hear that the minority is getting a louder and louder voice.

Many of the things you’re talking about remind me of what we’ve been going through in health literacy for the last 20 years. First is awareness, then new terminology and clarification of that terminology.

I was serious. There was a little video out there. “You can’t tell by looking.”

What we are doing a lot these days in developing materials is to do it with our users so that it’s a true collaboration in team-work. The writers, the content experts and our readers can all be in this together.

That’s what I’m taking from the work that you’re doing. We are all in this together and we are learning. We might make some mistakes, but as long as we’re trying our best we’re moving forward.

Did I capture that correctly? Is that kind of the essence of what this is about?

Dr. Ralph Vetters: Yes. Our parent clinic, Fenway Health, went through exactly that sort of process to come up with ways of capturing data for our transgender patients.

They circulated a variety of different drafts of phrases and terminology and they tried it out on our transgender patients. They got their feedback, they took it back, reworked it and brought it back a second time and circulated it around.

They used that after those multiple iterations not only for our own paperwork and registration material, but they presented it to the Federal Government Health Services Administration on ways in which their electronic medical records could be altered to capture these data.

Helen Osborne: It’s the same process.

Dr. Ralph Vetters: I hadn’t thought of it until you mentioned it. I realized, “Oh, they did it right.”

Helen Osborne: Maybe this is the greater message. We have more in common than we are different.

I want to thank you so much for, most of all, doing what you’re doing and then for sharing this with listeners on Health Literacy Out Loud.

Each of us affects quite a few people and we are all making a difference. We can pass along your lessons learned and your guidance.

We will have your own Health Literacy Out Loud web page and perhaps there will be some resources there to learn more.

Meanwhile, I just want to thank you so much for being a guest on Health Literacy Out Loud.

Dr. Ralph Vetters: Thank you. This was very fun.

Helen Osborne: As we just learned from Dr. Ralph Vetters, it is so important to be inclusive and respectful in all our health communication. But communicating in these and many other ways can be very hard to do.

For help clearly communicating your health message, please visit my Health Literacy Consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free monthly e-newsletter, What’s New in Health Literacy Consulting.

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Until next time, I’m Helen Osborne.