Is video-based research feasible for pediatric urology visits?

In this interview, Francesca A. Williamson, PhD, and Pankaj P. Dangle, MD, MCh, FAAP, discuss the recent Journal of Urology paper, “Urology HEIRS: A Feasibility and Acceptability Study for Video-Based Research on Physician-Family Communication in Pediatric Urology Visits.” Williamson is an assistant professor of learning health sciences at the University of Michigan, Ann Arbor, and Dangle is an associate professor of urology and an adjunct associate professor of anatomy, cell biology & physiology at Indiana University School of Medicine in Indianapolis.

Please describe the background for this research.

Francesca A. Williamson, PhD

Williamson: Part of this has to do with luck. We had a chance meeting; we were both at a leadership development workshop, and through that we learned that we were both interested in family/physician communication and some of the inequities that happen related to people having, for example, language access, different cultural and other social or moral expectations that come up in pediatric urology visits. And so we both sort of landed on our interest in racial, cultural, and language differences and how that plays out in urologist/family communication.

We went to the literature and we tried to figure out how people studied this before. And it turns out most of the research on anything having to do with communication is based on self-reported data. And so interviews and surveys, but we haven't found anything where people are actually observing how people communicate in real time. And so our idea was, what happens if we just record the interactions in pediatric urology visits? This kind of research happens all the time in adult settings, less often with children, but we thought we might learn something that's useful for urologists, but also other care providers in pediatric contexts that have conversations about surgery or other higher stakes decisions.

Pankaj P. Dangle, MD, MCh, FAAP

Dangle: To give you a little bit of a background, I see a lot of patients whose native language is not English. And I do this at a community hospital where I see sometimes 50, sometimes 70 patients, and most of these patients need a language interpreter. And though the majority of the issues with these kids are very benign, many times I've felt like I was not able to connect with the families. Even explaining and talking to them about risk-benefits was kind of challenging. It always bothered me. Am I doing my job right? Am I giving them enough information? Me meeting Dr. Williamson was a godsend because we were just sitting at a table and we just started [talking] and she told me what her background is and I literally jumped out of the chair and I was like, "I need your help."

And from there on, it was just phenomenal to work together to figure out how we can help these kids because there are lots of families who don't say a word when you're talking to them. That scares me for a few reasons. One, I think they're just scared about the system to speak up. [In addition], I'm scared; am I doing my job right by giving them what they need to know before they make this informed decision? We have learned a lot since then. And thanks to Dr. Williamson and her team who have done extraordinary work and phenomenal work in this arena to know what we know today.

What were some of the notable findings? Were any of them surprising to you and your coauthors?

Williamson: I think the first surprise for me at least was when we would talk with other researchers or even funders, people would say, "You could never get people to agree to having their visits recorded." And we took a lot of care in making sure that the cameras were set up in a way...that...protect[ed] the privacy of the children and families in the visits. We also knew that some of the things that people were doing, like with facial expressions or gestures, were also really meaningful for the conversations that were happening. So for me, my first surprise was, how many people were really interested in participating? Our consent rate was over 70%, which is higher for a lot of health research in general, especially since COVID-19, and the families of color, including Spanish-speaking families who use interpreters, were also excited to participate in this study.

I think that this video-based data collection, though it comes with lots of ethical and privacy-related challenges, it was a really low-burden way for people to participate in research that they felt like mattered. I've done other kinds of research too, [such as] surveys. As soon as people see the piece of paper, they say, "I don't have time to do that." But offering opportunities for them to still participate with just being recorded and doing what they usually do and also having the opportunity to turn the camera off if they wanted to, I thought really led to some of the success for our participation.

Dangle: I totally agree with Dr. Williamson. Before we even began this and when we presented this concept to many of my colleagues, there was no knowledge about this being done before. I'm not sure any of my colleagues had considered this aspect of this research for any reason. And this is just to say the awareness about something like this where communication is a key, especially in a surgical subspecialty, there is complete lack of understanding of this in surgical subspecialties, at least in the pediatric world. We had done something related to this topic, where we had surveys asking families, what is the ideal modality of communication when English is not the first language? And there is definitely a barrier from that aspect. We recruited close to about 70 to 75 patients, if I'm not mistaken. The study staff was bilingual and extremely fluent in Spanish.

What bothered me the most is with the media that we were using, the interpreters, to best the of their abilities, were not able to translate or understand the patients or vice versa; whatever the patient said was not interpreted 100% or whatever the physician said was not interpreted 100%. There were lots of gaps where the interpreter had their own version of how they processed it and put it in their own words vs using the precise words of what complaints they had or what they voiced or how they understood. That opened our eyes a lot. And then subsequently, this research happened. So I bought into this that whatever we say doesn't get interpreted 100%, there is about 50%, 60% that is missed. It's not easy for a surgeon to make sure that the family interpreted what we said in terms of risk-benefits, complications, etc, for a lot more involved and complex reconstructions that I do in some of these babies.

That bothered me the most. Hopefully, we'll find an answer. Most of the families wished there was an in-person interpreter. It makes a big difference, because I do have interpreters every now and then in person. Just 2 days ago, I had a difficult situation. The family was Haitian Creole. Thankfully, we had an interpreter in house and I could explain to the mom word by word by drawing and...could connect with her via an in-person interpreter. It makes a big [difference].

Williamson: Related to that, one of the things that we were able to capture was real-world uses of Martti, which is a synchronous FaceTime video interpretation service. And we saw in the videos multiple instances where the technology itself failed, and when it did fail, the conversations with family suffered. As an example, and your pediatric urologists know this, but sometimes after getting the Martti up and started, the server would go down, it would go offline, and then they have to restart the whole process over again. That extends the time of the visit. But what we also found is that with those kind of difficulties, certain important parts of the conversation would be missing from visits with families using interpreters. So we would see fewer instances of discussions of risk-benefits and alternatives to surgery. I wouldn't attribute those necessarily to bias or ill will of individual urologists, but rather that's one of the ways that inadequate infrastructure manifests in those conversations. Just having that technology isn't enough. There needs to be support for training with how to use those technologies. But also, as Dr. Dangle mentioned, those in-person interpreters in our data were much different than the technology-mediated ones.

Dangle: What Dr. Williamson was mentioning is that we lose our train of thought as we're communicating with the families and suddenly the server goes offline and you have to start all over again with a new person making sure that they translate what we were trying to communicate. And then you are starting from ground zero. So there is a potential for missing out on important information that the family needs to know.

What are the next steps for this research?

Williamson: This first paper was really to show that our research methodology was feasible and acceptable with pediatric urology patients and families. We've done that, and now we have a huge corpus of data that we can further analyze through empirical studies. Right now, we're working on a paper that's about risk communication at the point of care. There's a lot of research about different technologies and digital forms of communicating risks, but research still shows that families prefer to have those conversations face-to-face at the point of care. And so what we built is a data set of real-world examples of urologists having conversations about risks, benefits, and alternatives and how they do it. So our next paper is related to, what are the ways that pediatric urologists design conversations about risk and how do families respond to those different communication strategies? I mentioned the work with the Spanish-speaking families who are using the interpreters.

We are working with analysts who are native Spanish speakers to start building out that analysis to see what might be some opportunities or things that can be implemented at the point of care that could enhance those conversations, in part because we know that health systems are increasingly replacing people with these kinds of technologies, and so they're not really going to go away. But what are things that we could design to complement or better support families in having these conversations and making decisions? Longer term, we want to partner with families and urologists and more researchers to co-design some kind of intervention that we can test out between both of our institutions and maybe something that could be further developed into a toolkit to really enhance communication at the point of care. It's really critical for establishing those relationships, even if it's a short-term relationship, and building trust with families, especially those who might not be as trusting of health systems as we would like.

Dangle: This is important as the population is getting more and more diverse. We're going to have patients who, even if they're bilingual, would prefer their native language as way to communicate for their medical care. [That has happened] many times in our own clinical set-up where the parents understand English and speak English fairly well, but prefer to have an interpreter to establish this kind of a dialogue with the provider and to know what their child needs and what they're going to go through. I think this is not only a problem pertaining to pediatric urology; I think this is a problem for any surgical subspecialty or any specialty that communicates with patients or caregivers who prefer their own native language to communicate the care that we provide to their dear ones and loved ones. It's a wake call for all of us as a medical specialty that we all need to integrate some better ways of communicating with families, whether it's an in-person [interpreter] or some other effective modality, and applying those tools, making sure that either the patients themselves or the families and caregivers are comfortable voicing their concerns and getting what they need in terms of care and the tool for having that shared decision-making where they feel they have the ability to do that with confidence. As Dr. Williamson mentioned, trust is a big, big issue. They do not say it, but I can see it in their eyes.

What is the take-home message for the practicing urologist?

Dangle: To me, one needs to be cognizant about some of the deficits that we have in our system when we try to do the best we can to give the comprehensive care to any patient that we see. Time constraints are big issues, especially in a situation where your clinic is packed with patients back-to-back and then you have a patient who doesn't speak English, and you have an electronic system that you are trying to make work to make the most happen in that time span. There is pressure on the providers as well as pressure on the system in many ways where one has to be mindful about that and maybe spacing these patients out a little more in terms of the time that is allotted to see a patient and maybe having a limited number of patients per clinic and not having multiple patients on a day where you have too many patients where you need language interpretation and other, better technologies or better modalities of communicating with families or maybe having an in-person interpreter would be ideal.

The onus is on us. It's trying to provide the best we can with whatever is available. When I'm talking about the basic things, which is kind of everyday circumcision or hernia and hydrocele and undescended testes, it's not hard to communicate because we do them so often. We know what to say. But there are patients who have complex problems like complex hypospadias or they need surgery on their 1 kidney, or they have problems as they age with their kidney function, etc. Those are the challenges that we face as pediatric urologists. But I'm certain that urologists in general have challenges in communicating their results or discussing their pathology or critical values over the phone or otherwise. I'm sure those are not easy to communicate.

Is there anything you would like to add?

Williamson: I think from my perspective as a social scientist, some of the things that struck me the most were the things that families seem to respond really positively toward, things like having really affirming interactions with children and things like validating families' hesitance when it did come up, those things seem to matter a lot in the conversation and where the conversations went. I research the things that work well and the things that could be improved. And so I think some of the things that work well, keep doing those. And I'm looking forward to working with Dr. Dangle to get more findings out about the things that were going well on these visits.

I think maybe just to reiterate that being able to have a multidisciplinary partnership with pediatric urologists, researchers, public health professionals, it was eye-opening in a lot of different ways, but it gave us a more holistic picture about what's happening at the point of care, how it might be connected to postoperative issues, preoperative access. And so being able to have these sort of multidisciplinary partnerships, I don't think it's fully represented in our paper, but it's critical for the success that we've had thus far.

Dangle: I 100% agree with Dr. Williamson about this. There was a lot of groundwork and work that was done preceding this. From the day we started doing this, her team was extremely dedicated and devoted to making this happen. The flow of the clinic was absolutely undisturbed when they did this. The point is, unless we ask these questions, we are not going to learn about the existing systems and the gaps that we need to fill. The best way to take care of this diverse population is by studying the system that is in practice and understanding more about it and learning from it to do the best we can every day. I'm glad that we did this. We learned a lot. I'm very mindful about every time I see a patient who does not speak English, I spend more time with them making sure that they understand and try to do the best every time.