Natasha Shur, MD, a clinical geneticist at Children's National Health System, is spearheading a new telemedicine program for pediatric patients who have genetic or rare conditions.
Since its launch in January, between 50 and 60 parents or caregivers have tested out the pilot program. The telemedicine technology allows patients to connect with their Children's National provider by audio and video, rather than in-person.
The program received support from the health system's Rare Disease Institute as well as the New York-Mid-Atlantic Regional Genetics Network and the Health Resources Services Administration.
Here, Dr. Shur, who serves as director of the program, discusses the inspiration behind the initiative as well as how virtual visits have benefited her patient population.
Editor's Note: Responses have been lightly edited for clarity and length.
Question: What first sparked your interest in telemedicine?
Dr. Natasha Shur: As a clinical geneticist and a mother of two children, I relate to parents who find it challenging to drive great distances and manage busy lives while often attending multiple medical appointments. Caring for any child, let alone a child with complex medical needs or a rare disorder, brings many rewards but also potential obstacles. Over the years, as I saw many parents struggle, I found myself repeatedly asking a very simple question: How can we make life easier for every family and for every child we work with? Some physicians want to study a rare disease or a metabolic pathway, which is wonderful. However, at some point, I realized that I want to dedicate my academic life to improving practice models.
The central question of 'How can we make life easier?' led to more questions. Are there ways to make medical care more efficient? Can we experiment with the current model of care and add in new approaches that improve rather than take away from our traditional practices? These questions all led me to telemedicine as a potential answer, especially when combined with in-person care and other innovative approaches. While maybe, in medicine, there are times when telemedicine offers the best visit, other times an in-person visit should be the priority. We need to tailor our approaches to every child and family and offer new and innovative options that reflect current lifestyles and society practices.
Q: What do you find your patients like the most about virtual appointments as opposed to in-person?
NS: The virtual appointments have a slightly different focus than the in-person visit. I find that parents and children feel more comfortable in their own homes, and we get a better understanding of how the child acts in their natural environment. In addition, I focus more of my questions on schedule, routine and lifestyle. Are there medical, dietary or other changes that can impact everyday life? How will a potential diagnosis change this routine? What can we do to help lessen the day-to-day burden?
Since families do not have to drive, check in and go through vitals and wait in a in a clinic room, I find that the conversations are calmer and more focused. I’ve done visits where a child is in a high chair eating a bagel, or an older brother is walking around the house with the younger child whom I am evaluating – and I could watch the child climb stairs and get a better sense of motor skills. On the other hand, the in-person visit provides a better physical examination and more traditional eye-to-eye contact. I believe that both visits have an important role and the telemedicine visit does not always replace an in-person visit.
Q: How do you think telemedicine will evolve in the next three to five years?
NS: In a sense, we are bringing back the idea of 'home visits' to medical practice. The physician does not physically sit on the couch, but we do feel like guests in the home, and this brings a new level of connection with families. So far, the feedback about these visits, for their convenience and focus, has been wonderful. I believe this option will become increasingly used and integrated into medical care. Reducing transportation costs, missed work time, appointment times and other barriers to in-person visits will in turn provide a more positive and meaningful medical option.
Q: What are the next steps for your telemedicine program?
NS: Since our pilot project was successful, we are adding to our telemedicine visit options and offering this type of visit to more families. We're also increasing the participation of dietitians and genetic counselors, along with physicians, during these virtual visits. We are trying to raise awareness that the program exists and to create a formal triage process to maximize use of these visits and guide families on whether they will benefit from them, or from a more traditional approach.
We are also discussing creating multidisciplinary telemedicine clinics, such as a dermatology-genetics clinic, and we are developing a genetics autism clinic, where families can choose between telemedicine versus in-person visits for the initial consultation.
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