key: cord-0863183-4ss33zhk authors: Uhlmann, Wendy R.; McKeon, Andrew J.; Wang, Catharine title: Genetic counseling, virtual visits, and equity in the era of COVID‐19 and beyond date: 2021-07-21 journal: J Genet Couns DOI: 10.1002/jgc4.1469 sha: 111837a27ac028293f26545758de0dcb3f0045bc doc_id: 863183 cord_uid: 4ss33zhk Overnight, as a result of the COVID‐19 pandemic, telehealth rapidly transitioned from limited application to widespread implementation. The field of genetic counseling was well positioned to make this transition to virtual care since there is generally less of a need for patients to be seen in‐person for physical exams or urgent care. Going forward, virtual visits will presumably become a mainstay in the provision of genetic services and it is anticipated that clinics will adopt “hybrid” models with both in‐person and virtual visit options. This commentary highlights the successes and challenges in the rapid implementation of virtual visits, focusing on who has benefited versus who has been challenged or left behind. We also discuss genetic testing considerations, including the additional steps required for patients and clinicians when testing is ordered outside of the clinical setting, which can result in delays or a lack of testing altogether. Future research considerations are presented to address the needs among the most vulnerable and help ensure equitable access and benefit. Overnight, as a result of the COVID-19 pandemic, telehealth rapidly transitioned from limited application to widespread implementation. In order to comply with stay-at-home orders and maintain social distancing, there was a critical need to provide health care to patients in their home settings using telephone or video visits. The field of genetic counseling was well positioned to make this transition to virtual care since there is generally less of a need for patients to be seen in-person for physical examinations or urgent care. In fact, some genetic counselors had been providing telehealth services for years as part of their work at academic medical centers, outreach clinics, or through positions at commercial genetic counseling and genetic testing companies (Cohen et al., 2019; Du & Becher, 2018; Hilgart et al., 2012; Maiese et al., 2019) . Going forward, virtual visits will presumably become a mainstay in provision of genetic services and health care. It is anticipated that clinics will adopt "hybrid" models, offering a combination of both in-person and virtual care options (Bergstrom et al., 2020; Mahon, 2020; Norman et al., 2020; Pereira et al., 2020) . This commentary highlights the successes and challenges in the rapid implementation of virtual visits, including consideration of who has benefited versus who has been challenged or left behind. Future research considerations are presented from an equity lens. Throughout this commentary, we will use "telehealth" to refer to the remote applications of telephone or videoconferencing in health care and "virtual visits" when specifically referring to videoconferencing visits. Much of the earlier work in expanding the availability of genetic services through telehealth has focused on the effectiveness of telephone counseling (Cohen et al., 2019) . Prior trials, mostly in cancer genetics, have demonstrated the extent to which genetic counseling via telephone is non-inferior to in-person visits (Bradbury et al., 2018; Kinney et al., 2016) . Additionally, studies conducted before the COVID-19 pandemic have shown strong consensus regarding the benefits of video visits and consideration as a viable alternative to inperson care. These benefits generally include overcoming geographic distances, reduced costs and travel time, greater convenience, and high patient satisfaction (Gorrie et al., 2021; Hilgart et al., 2012; see also (Terry et al., 2018) . The limited use of videoconferencing in genetic counseling, and health care in general, had been due to financial costs of platforms and equipment, insurance coverage, logistical issues, and uncertainty regarding its efficacy relative to in-person care. Many healthcare systems lacked the necessary equipment and infrastructure for video visits (Zierhut et al., 2018) . Moreover, both the patient and the healthcare provider were generally required to be at sites with specific encrypted HIPAA-compliant equipment for use, with additional trained support staff at the remote sites (Greenberg et al., 2020; Mahon, 2020) . Limitations in billing and reimbursement have also been among the most commonly cited barriers to widescale implementation of video visits (Zierhut et al., 2018) . While policies have been previously implemented at the state level to promote equivalent coverage and reimbursement for telehealth services by commercial payers, these policies varied substantially from state to state (Lacktman et al., 2021) and were largely not in place at the federal level for Medicare and Medicaid beneficiaries. Rapid and widescale implementation of telehealth during the COVID-19 pandemic was largely made possible by technological solutions, the relaxation of existing telehealth restrictions to allow use of HIPAA non-compliant platforms, and temporary equivalent reimbursement for video visits and in-person visits for the duration Virtual visits were rapidly implemented due to the COVID-19 pandemic and will presumably be an integral part of genetic counseling practice going forward. This Commentary considers benefits and challenges with virtual visits and presents future research considerations in this area from an equity lens. Contreras et al., 2020; Ortega et al., 2020) . Some states even relaxed licensure laws, allowing care of patients outside of state boundaries (Pereira et al., 2020) . These changes made it possible to rapidly implement virtual visits at home for both patients and clinicians, using a home computer, tablet, or smartphone. City reported being satisfied with providing telehealth services through video (93.1%) and telephone (81.4%) modalities, though 68.6% indicated that they would prefer that the majority of patients be seen in-person post- COVID-19 (Bergstrom et al., 2020) . In another study, all patient respondents were willing to use videoconferencing again, and about half reported that they preferred video visits over traveling to an appointment (Pereira et al., 2020) . Virtual visits have also allowed extended family members to be seen simultaneously or simply to be present virtually to support the patient. This would not have been possible in-person during COVID-19 given clinic restrictions limiting the number of people who may accompany the patient. Furthermore, virtual visits allow for visual cues which otherwise would be lacking during in-person visits due to masking of patients and providers. Other benefits associated with conducting a clinic visit virtually have been reported. For pediatric patients and individuals with special needs, being seen in their home environment allows clinicians the opportunity to observe them in a place where they are comfortable, and potentially better assess their level of functioning (Pereira et al., 2020) . Being at home may also lessen patients' anxiety around the clinic visit and provide more time for decision-making, without being preoccupied by a blood draw or prenatal procedure following the genetic Shur et al., 2020) . These differences will very likely result in cost savings, as demonstrated previously with the implementation of videoconferencing in cancer genetic counseling (Buchanan et al., 2015) . Virtual visits can potentially decrease costs for patients (e.g., no costs for travel or childcare, less time off work needed), clinicians (no travel costs, especially to outreach clinics which can be hours away), and insurers (if covering patient's travel costs). In addition, for clinics in which clinician availability exceeds the number of available rooms, the ability to see patients virtually can allow more patients to be scheduled and enable urgent patients to be more easily accommodated. Furthermore, the use of virtual visits for disclosure of genetic test results can enhance communication by allowing the clinician to pick-up on nonverbal communication and body language, which is not possible by phone. Virtual result disclosures are potentially billable and use can also free up rooms in clinic if the results would otherwise have been disclosed in person. Notably, several challenges have also been observed with vir- Evidence regarding potential inequities in access to genetic ser- (2020) found that even with bilingual staff, patients who were older or mainly Spanish-speaking had trouble accessing remote services or were unable to connect at all; several Spanish-speaking patients opted to wait for in-person visits. When a patient cannot be seen virtually and/or has to wait to be seen in-person, this delays their access to genetic testing and potentially to results that could impact their care. Furthermore, for patients who have limited education or are non-English speaking, access to genetic testing may be limited by their understanding and ability to complete genetic testing forms and specimen collection via a saliva kit or buccal swab. Prior research by Butrick et al. (2015) demonstrated a lower uptake of genetic testing among minorities receiving genetic counseling by telephone compared with in-person counseling, but not among whites who participated in the study. This raised questions regarding the additional barriers to accessing testing among minorities in the telephone study arm (Butrick et al., 2015) . Inequities between patient populations are also observed through the lens of technology, with variability in both access to and usage of the technology required for a successful virtual visit. Clinician has to 1) place test order in electronic health record and lab portal and 2) make arrangements for paƟent to be sent saliva or buccal swab kit by lab or have blood sample drawn 3 Lab has to send paƟent saliva or buccal swab kit 4 PaƟent has to provide sample and send back to lab or has to either go to blood drawing staƟon or have phlebotomy arranged at home 5 Delays can occur involving: • Clinician: when forms sent, how sent, 1 placing order and arranging for sample collecƟon 3 • PaƟent: when forms completed, how forms returned, 2 when sample provided/sent back for tesƟng 5 • Lab: when and how saliva or buccal swab kit is sent 4 Clinician/clinical staff has to send forms to paƟent (e.g. informed consent, billing form), if signature required, by secure email, e-signature soŌware, paƟent portal or mail their Internet needs (Pew Research Center, 2019b) . Smartphone dependency is particularly prevalent among Blacks (23%) and Hispanics (25%), compared to Whites (12%) (Pew Research Center, 2019b). These patients may be more likely to attend virtual visits on mobile devices with smaller screens, and perhaps outside of their home settings, likely diminishing the overall quality of the visit. Lower technology literacy is also a barrier for some patients, including older adults (Kurlander et al., 2019) , with a decreased ability to effectively utilize videoconferencing technology. Taken together, these findings suggest a striking digital divide, in which certain patient populations are less able to take advantage of telehealth services than others. The long-term integration and accessibility of virtual visits in health care will require that relaxations of telehealth rules and provision of equivalent reimbursement for video and in-person visits be made permanent (Contreras et al., 2020; Ortega et al., 2020) . This equivalent reimbursement should also extend to telephone visits, as video visits may not be an option due to technology access and/or patient preferences. In efforts to address technology access issues, the Federal Program, the COVID-19 Telehealth Program, and the Rural Health Care Program. These programs, which include allocation of funds to provide necessary hardware and internet access, are increasing telehealth services for low-income patients and patients in remote areas. Efforts must also expand to residents of urban, inner city areas who are unable to afford high-speed Internet (Contreras et al., 2020; Ortega et al., 2020) . For patients who speak a different language, virtual visits make it easier for interpreters to be present since there is no travel to the clinic. However, someone who can interpret and provide assistance will likely also be needed prior to the appointment to help the patient access the virtual visit, and afterward for genetic testing and other tests/evaluations. Pereira et al. (2020) found that even with bilingual staff, there were still challenges. Institutional support for coverage of virtual interpreter services and patient navigators, especially ones who can speak different languages, is needed to help patients access health care virtually and even in-person. passage of legislation to amend federal law is also needed (Anderson & Terry, 2020; National Society of Genetic Counselors, 2020b). Without recognition, genetic counselors cannot use telehealth with patients who have Medicare insurance due to "incident to" Finally, it will be important for genetics clinics to tailor their own hybrid care models moving forward, with approaches that will work best for them and their patient populations. For instance, clinics may develop triaging practices for the different modalities based on clinical indications and patient factors that influence clinical outcomes. They must also advocate to garner continued institutional support and dedicated financial resources to facilitate hybrid care. Any efforts for the continued adoption of virtual visits or implementation of hybrid care models necessitate examination of clinical outcomes, particularly from a health equity lens. We suggest some research areas for consideration in order to prioritize efforts to assess and address the needs among those most vulnerable. There are also quality of care considerations and unknowns about how rapport-building, psychosocial counseling, and other aspects of genetic counseling are impacted in a video visit format (Zierhut et al., 2018; Zilliacus et al., 2010) , and these need to be examined from both patient and provider perspectives. Even with greater convenience, it cannot be assumed that patients will prefer virtual visits over inperson visits (Solomons et al., 2018) , which raises questions about how best to triage and weigh the many factors that may influence a patient's suitability for one mode of genetics service delivery over another. Researchers should monitor and evaluate the impact of policies on patient care, which may have implications for access and quality of care delivered (e.g., reimbursement for video but not telephone visits). Considerations for who has greater access to certain technologies but not others will likely reveal aspects of policies that may harm certain subgroups of the population. Future studies should not only focus on identifying barriers to access and care, but also actively work to develop intervention strategies and approaches to overcome these challenges (e.g., addressing barriers to off-site genetic testing). Considerations for interventions should be across different levels of the socioecological model (Stokols, 1992 ) to ensure that individual-level solutions and system-level solutions are examined. Examples of solutions include culturally targeted and sensitive educational materials (Conley et al., 2021; Henderson et al., 2021) , interactive digital programs (Wang et al., 2021) , and patient outreach and system navigation efforts (Mays et al., 2012) . The COVID-19 pandemic has ushered in a new era of widespread use of telehealth with the ability to see patients in their home settings. Yet this transition has also brought about many new challenges and unanswered questions. While prior work has been instrumental to inform our navigation of the evolving telehealth landscape, there remains a great need for research to identify and address these issues to ensure maximization of benefits. The genetics community is now well-positioned to reflect upon and share lessons learned in recent months as we consider both the successes to carry forward and the challenges that remain to be addressed. In order to establish best practices for hybrid care models, we must continue to ask the right questions, overcome the most pressing barriers that are driving disparities, and serve as advocates for our patients to ensure equitable access to high-quality virtual care. Wendy Uhlmann, Andrew McKeon, and Catharine Wang all made substantial contributions to the conception of the work, wrote and revised content, and provided final approval of the version to be published. All agree to be accountable for all aspects of the paper. No data from human subjects were collected by the authors for this commentary. No animal studies were carried out by the authors for this commentary. 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