Clinical models of telehealth in genetics: A regional telegenetics landscape

Abstract

The use of live video consultations in genetics has been shown to improve patient access with high satisfaction; however, little is known about the current landscape of clinical telehealth models in the field of genetics (i.e., telegenetics). This survey aimed to address that gap across seven states and the District of Columbia. Among 51 self‐defined telegenetics programs responding to an online survey, 32 currently utilized live videoconferencing as at least one of their technologies (i.e., were “video‐capable”). Analysis of this subgroup revealed that medical institutions were the most common program setting, and prenatal and cancer services were the most common sub‐specialty. Forty‐seven percent of these programs reported billing insurance for patient care. When exploring measures of patient access among these programs, 56% had a wait time of under 2 weeks, 25% saw more than 50 patients per month, 50% estimated their geographic reach at over 200 miles, and 59% were able to provide remote telegenetics consultations to patients’ homes. Professional licensure was reported as the biggest barrier, and patient access and convenience were reported as the largest benefit and success. Among the 19 remaining programs, eight currently active programs exclusively used telephone technology; these were less likely to have a geneticist (p = 0.01), had a shorter wait time (p = 0.04), and had been established for a longer time (p = 0.02) when compared to video‐capable programs. Further, two currently active programs indicated the use of store‐and‐forward telehealth. Finally, nine programs were currently planning their programs, with a focus on video‐capable technologies and more varied patient specialties. We observed a diverse landscape of telehealth models being utilized to provide genetic services, and the data demonstrated that these programs are focused on enhancing patient access. Our query about telegenetics drew responses from programs that were not using live videoconferencing technology models, which prompts further exploration, and challenges us to develop consensus around the meaning of “telegenetics.” Similarly, our data suggest a need for continued research to assess the equivalency, accessibility, and role of telephone consultations across genetic services. While a multitude of policy factors influence which service delivery models are utilized, further research on these varied approaches, and their associated patient outcomes, is also needed to inform program development.

Experiences from the epicenter: Professional impact of the COVID‐19 pandemic on genetic counselors in New York

“…Previous studies have highlighted both the utility and difficulty of implementing telegenetics services (Greenberg et al, 2020; Zierhut et al, 2018; Zilliacus et al, 2010). For many reasons, such as technological difficulties, communication barriers, and reimbursement limitations, genetic counselors have been slow to adopt the use of telegenetics (Otten, Birnie, Lucassen, Ranchor, & Van Langen, 2016; Terry et al, 2019; Zierhut et al, 2018). However, this changed drastically with the need to accommodate new healthcare delivery methods in response to the COVID‐19 pandemic.…”

“…There are acknowledged challenges to telegenetics consultations, including the inability to perceive patients' nonverbal cues, difficulty performing psychosocial counseling, technology‐related issues, and reimbursement limitations, leading to a historic provider preference for an in‐person model of health care delivery (Terry et al, 2019; Zierhut et al, 2018; Zilliacus et al, 2010). These barriers are not unique to telegenetics as they have been experienced by many healthcare providers exploring telehealth across various specialties (Burke Jr. & Hall, 2015; Dinesen et al, 2016; Moss, Lai, & Ko, 2020).…”

“…However, genetic counselors in New York State (NYS) and 23 other states are further challenged because they do not have licensure (as of October 2020), which presents an added limitation to providing services to patients in need ("States Issuing Licensing for Genetic Counselors," 2020). Various studies have indicated that barriers to the implementation of telegenetics include limitations of billing and reimbursement as a direct result of the lack of genetic counseling licensure (Terry et al, 2019; Zierhut et al, 2018).…”

An international telemedicine program for diagnosis of genetic disorders: Partnership of pediatrician and geneticist

“…The approach in this article promoted efficient utilization of the geneticist's time, enabling focus on more complicated cases, and to provide supervision and support for the pediatric diagnostic team. Previous studies have shown that telemedicine reduces cost and time for both the doctor and the patient during encounters, decreases waiting times, improves disease awareness, creates access to specialty care otherwise not available in country, and increases regional reach and referrals to specialty programs (Helou et al, 2020; Hilgart et al, 2012; Hopper et al, 2011; Otten, Birnie, Ranchor, & van Langen, 2016; Terry et al, 2019). Telemedicine can also provide an effective method for genetic consulting and exchange of professional knowledge in between programs (Vrecar et al, 2017).…”

Blending Insights from Implementation Science and the Social Sciences to Mitigate Inequities in Screening for Hereditary Cancer Syndromes

“…Although Project ECHO has not yet been evaluated for its potential to broaden access to clinical genetics services, it holds some promise for increasing reach of these innovations. However, a survey of genetics providers in seven states and the District of Columbia found that insurance covered only about 47% of telegenetics services [70], suggesting that telemedicine is not the panacea that some have expected it to be. For these reasons, our model illustrates the importance of drawing together multiple parties when “changing service sites” or “providing interactive assistance.” In the examples that follow, we illustrate how collaborations among stakeholders across arenas may provide a more complete picture of who is and is not being served, and allow for more creativity in designing programs to reach those groups.…”