key: cord-0849492-78mig7x8
authors: Mantri, Sneha; Mitchell, Kyle T.
title: Falling down the digital divide: A cautionary tale
date: 2021-11-03
journal: Parkinsonism Relat Disord
DOI: 10.1016/j.parkreldis.2021.10.032
sha: 97ab0ed1fbc983a773860377aab16a0c6fcb1612
doc_id: 849492
cord_uid: 78mig7x8

The disruptions of the coronavirus pandemic have enabled new opportunities for telehealth expansion within movement disorders. However, inadequate internet infrastructure has, unfortunately, led to fragmented implementation and may worsen disparities in some areas. In this Correspondence, we report on geographic and racial/ethnic disparities in access to our center's comprehensive care clinic for people with Parkinson's disease. While both in-person and virtual versions of the clinic enjoyed high patient satisfaction, we discovered that participation by Black/African-American individuals was cut in half when we shifted to a virtual delivery format in April 2020. We outline potential barriers in access using a socio-ecological model.

1 Telemedicine in movement disorders can increase access to subspecialty care, monitor patient 1 symptoms and treatment response, and provide family support in times of crisis [1] . Catalyzed by the 2 coronavirus pandemic, the use of both synchronous and asynchronous forms of telemedicine has 3 expanded in the last two years [2] . While virtual visits allowed many people with Parkinson disease 4 (PwP) to remain connected with their healthcare teams, the rapid deployment of a virtual care as a 5 result of the pandemic, and the lack of supporting infrastructure, may worsen existing disparities in 6 access to care [3, 4] . Here, we report on our center's experience with telemedicine implementation of a 7 comprehensive interdisciplinary clinic for PwP, including unexpected benefits and challenges in access. 8

The Duke Movement Disorders Center is a designated Parkinson's Foundation Center of 9

Excellence, located in central North Carolina, with a catchment area spanning the entire state and an 10

annual PwP panel of about 2000 individuals across six fellowship-trained movement disorders 11

neurologists. In July 2019, we implemented an interdisciplinary clinic for PwP. Participants undergo 12 standardized evaluations by physical, occupational, and speech therapists who specialize in the care of 13 PwP, a social worker, and a clinical pharmacist. Following an interdisciplinary team meeting, the patient 14 and care partner (if present) meet with their movement disorders neurologist to review assessments 15 and devise a comprehensive treatment plan. We conducted the clinic in person from July 2019-March 16 2020. After a brief pause to reorganize in response to the pandemic, we re-opened the clinic in virtual 17 format from April 2020-July 2021, with scheduling flexibility over an assigned week to minimize screen 18 fatigue for participants. 19

As demonstrated in Figure 1 , the geographic and racial/ethnic mixture of patients seen in the 20 clinic changed after the shift to a virtual model. Prior to the pandemic, approximately half of patients 21 seen in the comprehensive clinic were located within a 1-hour drive from our Center. The most common 22 reason for late cancellation was the 6-hour appointment duration, which necessitated PwP living farther 23 away to arrive the night before and stay locally. While virtual implementation expanded geographic reach, it also unmasked significant loss of access for Black PwP (7.7% in-person vs 3.5% virtually; Z=-1.6, 1 p=0.05). Changes in visits for other racial/ethnic groups were not statistically significant. The most 2 common reason for late cancellation for the virtual comprehensive clinic was cost of care and/or lack of 3 insurance coverage for telehealth services by physical, occupational, or speech therapy. Analysis of 4 these barriers and other outcomes is underway, including patient-reported Self-Efficacy for 5

Management of Chronic Disease [5], health utilization, and documented adherence to quality metrics 6 for PwP. 7

Sociodemographic disparities in telemedicine access exist across multiple specialties [3]; 8 possible explanations range from individual factors such as lack of familiarity with online technology to 9 community or policy factors including fragmented insurance coverage for telehealth services or limited 10 internet infrastructure in rural areas. Overcoming these barriers will require not only creative thought 11 on the part of individual clinicians but also structural changes in the practice of movement disorders in 12 the United States. This letter describes our single center's experience; comparative data from other 13 regions or countries will be helpful in evaluating the impact of different strategies to bridge the digital 14 divide. For instance, asynchronous "store-and-forward" assessments can lessen the need for high-15 bandwidth two-way streaming video services. Alternatively, a "hub-and-spoke" model, wherein patients 16 travel to a local health center or community space for a consultation with a remotely-located specialist, 17 could provide patients with additional, on-the-ground technical support [4] as well as promote 18 academic-community partnerships. These partnerships could further ensure that specialist 19 recommendations are able to be implemented at the local level. 20

These models, and others, will require a reconsideration of how we define, deliver, and fund 21 healthcare in the 21 st century. Telemedicine carries great promise for the care of PwP, but as our and 22

others' experience demonstrates, we must ensure that expanded access does not leave behind 23 vulnerable patients. 24 J o u r n a l P r e -p r o o f the Journal's position on issues involved in ethical publication and affirm that this work is consistent 37 with those guidelines. 38 

Patient Views on Telemedicine for 2 Parkinson Disease

International Telemedicine Study Group, Global Survey on Telemedicine 5 Utilization for Movement Disorders During the COVID-19 Pandemic

Telemedicine, 8 COVID-19, and disparities: Policy implications

The new platforms of health care

The English and Spanish Self-Efficacy to Manage Chronic Disease Scale measures 13 were validated using multiple studies

Author Roles 17 SM: 1B, 1C, 2A, 2B, 2C, 3A, 3B 18 KM: 1A, 1B, 1C