Christian Henry: Providing Better Cleft Care Through Data
As our Associate for Research & Innovation, Christian Henry is at the forefront of Smile Train’s groundbreaking work to build a brighter future for everyone with a cleft. We recently caught up with her to learn more about how she ended up at the intersection of data, technology, and healthcare; what current projects excite her most; what the future holds for cleft treatment; and much more.
Describe your role and tell me about your journey to Smile Train. How did you get into data and public health?
I work closely with Smile Train’s Vice President of Research & Innovation Priya Desai, and the rest of the Programs team. On the research end, I help our medical partners in the field get their research published and out in the world and presented at conferences. On the innovation end, I help foster new ideas. So that could be the Virtual Surgery Simulator (VSS) or this really cool app we’re working on to help patients with their psychosocial health that I’m super excited about.
How did I get into this? I went to Texas A&M and I got my Master’s in public health and epidemiology; I think everybody knows what that is now — I used to have to explain it! I studied it because I thought, “You know, I think data is really important and learning more about the spread of diseases is going to be really important later on.” I just did not know how important it was going to be!
I came to Smile Train from a nonprofit that looks at the mental health side of housing and human services for people who are unhoused. I was looking for an organization that would look more at the medical side — even though I still have a passion for mental health — and Smile Train was the perfect place to do that.
How would you describe your work to a patient? What does it mean for them?
I would say my role is to help the people who are helping you — the doctors, the nurses, all those people — learn about how to treat you better.
Why is Smile Train’s cause and model meaningful to you?
Our whole model is to help train people to build better healthcare systems for themselves. That even extends to research; I’m training other researchers how to produce better research, then how to teach others those methods, too, so we can get the best research, the best innovations, out there. That’s so important because I feel like it’s how we’re going to keep advancing and improving the treatment we’re giving to all of our patients.
Why is doing this work for cleft treatment, specifically, so important?
I admit I wasn’t as connected with clefts in particular before I started working with Smile Train. I’d heard of clefts and I’d met people with clefts, but I hadn’t really thought too much about it. Once I started working with Smile Train, I realized it can be so important, it can affect someone’s nutrition, their physical health, their mental health, their dentistry for their whole lives. It’s not just a temporary thing. So if you can help someone get good care and an early start, you can change their whole trajectory.
What current Smile Train research projects excite you the most?
I already mentioned the psychosocial VR simulator, which is so, so exciting. It’s a project we’re doing with a university that will help adolescent and preteen patients go through a VR simulation where they can practice navigating social situations that may make them uncomfortable. And it’s in the form of a game, so instead of the patient looking like themselves all the time, they are a cat, like a super cat who needs to collect things.
In the first level, they are at a soccer game, and they have to ask, “Hey can I join this game? Can I join this team?” Which is awkward and uncomfortable for everyone, so it’s helping users with that task of like, hey, how can I do this? And there’s a psychologist on the other end monitoring their responses to see how they go through it, to help them get better and more comfortable at it.
So that’s one I’m really excited about, but in general research, we have had 25 partners submit their abstracts for the American Cleft Palate Association Conference, and they have accepted 18 of them. Which is amazing — that’s the most that’s ever been accepted from Smile Train so far. It’s also a high number of international acceptances, because usually ACPA is just America and Canada and maybe sometimes Mexico. But this year, we’ve had a lot of partners from Brazil and other places be accepted, so we’re super excited about that because it means there’s going to be a big presence for local Smile Train partners at this conference.
How many partners are usually accepted?
Last year, we may have had half that number, maybe 10 or a dozen overall abstracts submitted to that conference. Of those 10, maybe eight were accepted. So we’ve probably doubled our numbers overall. Internationally, looking historically at the ACPA’s website, they would have one small section for international abstracts, and there were like, five.
What’s your role in getting these papers there?
I help by, number one, reminding people all the time to submit by the deadline. I also arrange translations, because most conferences don’t accept abstracts that aren’t in English. A lot of partners may be able to speak English, but writing might be difficult, and especially writing scientifically might be very difficult, so having those translated for them can help a lot. I also offer to submit on their behalf if they aren’t able to. I also review, so if someone is worried about the wording in their abstract, I’ll look over it.
Where do you see Smile Train’s R&I in five years? Ten? What do you think we will know about clefts by then and what will be possible?
Like I said, research now is mostly dominated by high-income countries. I’m hopeful that within five years that’s not as much the case, that it’s more diversified and the standard isn’t just to have a high-income-country person on your paper and then maybe you can get published or into a conference. I’m hoping that that barrier will get broken down.
As far as innovation, I’m hopeful that things like our VSS will be built out more. For example, it would be really cool if maybe we can incorporate VR into it, or even pair it with Simulare devices. I’d also like to see us build it out for other things too — right now, it’s just surgery, so if we could build out virtual simulations for dentistry and other things, that would be great.
It seems like a lot of your role is to make cleft treatment research spaces more diverse, equitable, and inclusive. Can you speak to that?
Yeah, there’s a bit of neocolonialism in research. It’s funny, even in my interview for this job, Priya and I talked about how the role contains this aspect of working with people and pushing them into spaces they are not normally in. I was like sign me up! But yeah, there’s a little bit of, “How do we get people on the level where they can compete on stages that they’re not usually on now?”
How do you see Smile Train advancing data-based decision making in healthcare?
Smile Train already has a lot of data with Smile Train Express [our proprietary patient database], and I think there’s so much there that has yet to be really mined through and interpreted. I think we could be using that data to better estimate cleft numbers and prevalence and location and really get the ball rolling on a lot of other things if we really go through it.
I’m also hoping that, in the future, numbers will be something that are a little less open to interpretation. As someone who studied public health and epidemiology, I know that you can spin things any way you want to, but I’m hoping we can take some of the spin off.
What is your message to the global cleft community?
Thank you. Thank you so much, especially, to all the professionals who do all of the hard work that definitely doesn’t get highlighted as much as it should, and especially to those working in low- and middle-income countries. I have seen so many researchers do such, such good work and really make innovations and strides that I wouldn’t even have thought of. So thank you all for thinking outside the box.
And to the patients, thank you for being willing to be a part of that.
Smile Train offers a comprehensive, free library of cleft resources for medical professionals on its website.