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Service Delivery Innovation Profile

Neurologists Enhance Access to Specialty Care Through Virtual, In-Home Visits for Patients With Parkinson’s Disease, Generating High Levels of Satisfaction


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Snapshot

Summary

Neurologists at Johns Hopkins Medicine and the University of Rochester Medical Center who have expertise in movement disorders offer virtual house calls to patients with Parkinson's disease and other neurological disorders. During the 30- to 60-minute visit, the neurologist evaluates the patient in much the same manner as he or she would in person. In pilot studies, the program enhanced patients' access to care from a neurologist, which in many cases led to changes in diagnoses and new recommendations for care and lifestyle-related behaviors. Virtual visits generated very high levels of patient satisfaction, particularly related to the time-savings associated with them. Many patients expressed a willingness to pay for virtual visits out of their own pockets, suggesting there may be demand for this type of care even though many payers do not currently cover it.

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation data on the number of patients with movement disorders provided with access to care from a neurologist through virtual visits, changes in diagnoses or new recommendations generated from such visits, and patient-reported satisfaction with the visits.
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Developing Organizations

Johns Hopkins Medicine; University of Rochester Medical Center
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Use By Other Organizations

Use of virtual visits for Parkinson's disease and other neurological conditions is common in Canada, where licensing and reimbursement barriers to telemedicine-based care do not exist. In addition, several integrated systems in the United States, including Kaiser Permanente and the Mayo Clinic, use virtual visits for Parkinson's disease patients who otherwise lack easy access to a neurologist; these same systems generally use virtual visits more extensively for patients with other chronic conditions. The Department of Veterans Affairs and many prison systems routinely use virtual visits for patients with a wide variety of chronic conditions.

Date First Implemented

2007
The program began in 2007 with residents of a 250-bed nursing home located in New Hartford, NY. A trial comparing a series of three in-home virtual visits over a 7-month period with similar in-person visits began on September 30, 2011. A subsequent trial to assess a one-time virtual visit for patients with limited access to neurologists launched in August 2012.begin ppxml

Patient Population

The program primarily serves patients with Parkinson's disease and other neurological disorders.Vulnerable Populations > Disabled (physically)end pp

Problem Addressed

Multiple barriers make it difficult for patients with Parkinson's disease (PD) to see a neurologist, including challenges related to leaving home and traveling the often-long distances required. As a result, many PD patients do not benefit from the improved outcomes associated with receiving care from a neurologist. In-home visits via telemedicine can enhance access to neurologists, but this option is not available to most patients with PD.
  • Challenges accessing beneficial care from a neurologist: More than 40 percent of Medicare beneficiaries with PD have never seen a neurologist and thus miss out on the potential benefits associated with such care, including reduced risk of events such as hip fractures, placement in a skilled nursing facility, and death.1 Multiple barriers limit the access of these patients, including difficulties leaving home and traveling the often-long distances required to see a neurologist in person.1,2 For example, in a 20-person randomized trial comparing in-person with virtual visits, the 11 patients receiving in-person care had to travel an average of 100 miles (3 hours) to reach a specialist.3
  • Unrealized potential of in-home visits via telemedicine: A small (20-participant) study found that virtual in-home visits yielded similar clinical (quality-of-life) benefits as in-person care.3 However, the vast majority of patients with PD do not have access to this service, as telemedicine’s use in neurology has to date focused primarily on serving patients in hospitals (e.g., for stroke care) and remote clinics.4,5,6,7 

What They Did

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Description of the Innovative Activity

Neurologists at Johns Hopkins Medicine and the University of Rochester Medical Center (URMC) who have expertise in movement disorders offer virtual, in-home visits to patients with PD or related disorders. During the 30- to 60-minute visit, the neurologist evaluates the patient in much the same manner as he or she would in person. Key program elements are outlined below:
  • Population and service areas covered: As part of both formal studies and everyday care, several neurologists at both medical centers conduct virtual visits with PD patients who face barriers accessing in-person care. Such care is offered only to patients in States in which the physicians hold a license to practice medicine.
  • Multiple marketing vehicles: As appropriate, the neurologists use various methods to market the availability of virtual visits, including their organizations’ Web sites, community outreach, national meetings, social media platforms, and the regular media. In addition, they build partnerships with organizations in a position to reach patients with PD. For example, as part of a trial offering one-time virtual visits to patients in five States, Johns Hopkins Medicine partnered with PatientsLikeMe, a social networking site that brings together patients facing similar medical issues. Under the arrangement, PatientsLikeMe sent targeted e-mails to members of its PD community (which includes 6,000 to 8,000 individuals) who lived in the five States in which the neurologist conducting the visits had a license.
  • Appointment requests: Patients (or their family members or friends) can request an appointment by e-mail or by calling the Telemedicine Network Project manager at the University of Rochester. To receive a visit at one’s place of residence, the patient must have access to a nonpublic computer or another Internet-enabled device. If the patient does not have access to this type of device, arrangements can be made for the virtual visit to take place at a health center near the patient’s home. During a trial testing a one-time virtual visit, 80 percent of visits took place in the patient’s home.2
  • Preappointment logistics: Before the scheduled visit, patients (or their caregivers) receive via e-mail a link to secure videoconferencing software that complies with Health Insurance Portability and Accountability Act (HIPAA) regulations. This software is provided at no cost to patients. A member of the neurologist’s office staff with basic knowledge of technology calls the patient or caregiver to provide any necessary technological support, including assistance downloading and installing the software and using the Web camera. This process normally takes no more than 15 minutes. Patients also receive instructions to provide a list of their medications and the name and contact information for the local physician who oversees care of their PD and related conditions.
  • Virtual appointment: During the 30- to 60-minute visit, the neurologist and patient communicate via Web-based videoconferencing. The neurologist performs an examination very similar to what he or she would do at an inperson visit. The visit normally includes taking a medical history; performing a focused neurological examination that includes evaluation of the various components of the Unified Parkinson’s Disease Rating Scale (e.g., rest tremor, action tremor, finger taps, hand movements, arising from chair, gait); and discussing recommendations related to medications and physical activity.
  • Summary letter to patient and local physician: After the visit, the neurologist writes a summary letter that reviews key findings and recommendations. Both the patient and his or her local physician receive a copy.
  • Followup visits: Subsequent virtual visits can be performed as the neurologist, local physician, and patient see fit. These visits generally do not require a preappointment phone call, as the software is already installed and most patients and caregivers know how to use it.

Context of the Innovation

Johns Hopkins Medicine is an integrated system made up of The Johns Hopkins Health System (including The Johns Hopkins Hospital) and The Johns Hopkins University School of Medicine. URMC is a large integrated system that includes Strong Memorial Hospital and the University of Rochester School of Medicine.

The roots of this program go back to the mid-2000s when leaders of a 250-bed nursing home in New Hartford, NY, approached two clinical leaders in the Department of Neurology at URMC (Ray Dorsey, MD, MBA, and Kevin M. Biglan, MD, MPH) about the possibility of using Web-based videoconferencing to offer virtual visits to the 20 percent of the home’s residents who had PD. At that time, the local area had no neurologists, and very few of the nursing home's residents could travel the long distances necessary to see one in person.

Did It Work?

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Results

The program enhanced access to neurological care for patients, which in many cases led to changes in diagnoses and new recommendations related to care and lifestyle-related behaviors. Virtual visits also generated very high levels of patient satisfaction, particularly related to the time savings associated with them. Many patients expressed a willingness to pay for virtual visits out of their own pockets, suggesting there may be demand for this type of care even though many payers do not currently cover it.
  • Enhanced access to neurological care: The program has enhanced access to neurological care for patients. For example, many of the 55 patients provided with a one-time virtual visit during the trial had never before seen a neurologist or PD specialist, including patients in areas without such specialists, such as Fresno, CA, and Pensacola, FL.
  • Changes in diagnoses, recommended care, and behaviors: Because they had not previously been able to access specialty care, patients often benefited from the neurologist’s expertise. Some received new or changed diagnoses, and many received recommendations to change medications or health-related behaviors, as outlined below:
    • New or changed diagnoses: Several of the 55 patients participating in the trial evaluating a one-time virtual visit received new diagnoses, including four previously undiagnosed patients who were diagnosed with various movement disorders (likely essential tremor, multiple system atrophy, psychogenic parkinsonism, and restless legs syndrome). In addition, four patients were identified as potentially having an impulse control disorder for which they received counseling and treatment. One patient previously diagnosed with PD had this diagnosis changed to likely progressive supranuclear palsy.2
    • Recommended lifestyle and medication changes: Many patients received recommendations to increase their level of physical activity (86 percent), change their current medication (63 percent), or add a new medication (53 percent). Some patients received advice related to comorbidities and recommended dietary changes, while a few were counseled to consider surgery.2
  • Very high satisfaction, particularly with time-savings: The majority of the 33 patients who completed a postvisit survey reported being very satisfied or satisfied with all aspects of the visit, including the specialist’s ability to do the following: understand and explain the condition, provide recommendations to improve quality of life, and gather relevant information. Overall, 85 percent of patents felt that they established as much (67 percent) or more (18 percent) of a personal connection with the doctor as they would have in person. Many patients and caregivers expressed appreciation for the greater convenience and comfort associated with not having to leave their home, thus avoiding the time, expense, and hassle associated with traveling, including missing time from work.2 In the earlier study comparing virtual visits with inperson care, virtual visits saved the average patient more than 3 hours (202 minutes) due to the elimination of travel time. As a result, 85 percent of participants expressed a preference for continuing to receive care via virtual visits rather than coming to the clinic.3
  • Many willing to pay for service: Nearly half (45 percent) of patients receiving the one-time visit expressed a willingness to pay $50 a month or more for access to as-needed virtual consultations with a PD specialist, including nearly a quarter (24 percent) willing to pay $100 or more and 6 percent willing to pay $200 or more.2

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation data on the number of patients with movement disorders provided with access to care from a neurologist through virtual visits, changes in diagnoses or new recommendations generated from such visits, and patient-reported satisfaction with the visits.

How They Did It

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Planning and Development Process

Key steps included the following:
  • Forming funding and marketing partnerships: When the program was implemented, Medicare and many other insurers did not cover care delivered in the home via telemedicine. Consequently, program leaders had to find partners willing to support the initiative. To that end, they met with leaders of various stakeholder groups with an interest in telemedicine or PD, including insurers (e.g., Excellus Blue Cross Blue Shield of New York), technology companies (e.g., Verizon, Google, Medtronics), and organizations focused on patient advocacy and support (e.g., PatientsLikeMe, National Parkinson Foundation).
  • Choosing software: The neurologists evaluated various HIPAA-compliant software products, looking for something inexpensive and easy to use. They initially chose software from Vidyo and more recently switched to SBR Health, a software suite that embeds the secure videoconferencing software from Vidyo in a virtual clinical environment that features a waiting room, scheduling support, and the ability to integrate providers across multiple disciplines.
  • Identifying in-house staff to support patients: The neurologists identified an existing in-house (nonphysician) staff person with a modest level of technological expertise who learned to use the system and software. This step prepared him to provide technological and logistical support to patients/caregivers and the neurologists.

Resources Used and Skills Needed

  • Staffing: Virtual visits require no incremental staff, as program-related activities (e.g., technical assistance) can generally be handled by existing personnel as part of regular job responsibilities.
  • Costs: Conducting virtual visits requires a one-time investment of $100 or less for a Web-based camera and monthly payments of approximately $200 to license HIPAA-compliant software. As noted earlier, patients receive access to the technology and the virtual visits at no cost.
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Funding Sources

Many organizations sponsored the various trials of this program, including Google, Excellus Blue Cross Blue Shield (Rochester, NY), the Paul Beeson Career Development Award Program, the Parkinson’s Disease Foundation Summer Student Fellowship, the Verizon Foundation, the National Parkinson Foundation, Medtronic, and PatientsLikeMe. The Patient-Centered Outcomes Research Institute (PCORI) provided funding for an upcoming 200-person randomized trial that will compare patients who receive a combination of virtual visits and usual care with those who receive usual care only.end fs

Adoption Considerations

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Getting Started with This Innovation

  • Secure funding support: As noted, most payers, including Medicare, do not currently reimburse for in-home care provided via telemedicine. Consequently, program leaders need to identify and meet with leaders of organizations that might be willing to support the program financially, such as local and national foundations (including insurer-affiliated foundations), organizations focused on PD and related movement disorders, and technology companies.
  • Begin with best “use cases” (which may be with other patient populations): With certain patient populations, providing care via virtual visits can save an organization time and money without negatively affecting revenues. Consequently, these populations represent good initial targets for this type of program. For example, many payers now use bundled payments for postoperative patients, with one fee covering the inpatient stay and postsurgery care. Many payers also do not provide additional reimbursement for patients readmitted to the hospital within 30 days of an initial discharge. Once institutional leaders see the potential of this approach, they may support expansion of the program beyond these initial targets to other groups of patients, including the relatively small number with PD.
  • Start in capacity-constrained clinics: The leaders of capacity-constrained clinics may want to invest in virtual visits as an inexpensive way to free up capacity (rather than embarking on costly renovations and expansions of physical space).

Sustaining This Innovation

  • Share data with payers: Widespread use of in-home virtual visits will not become a reality until third-party payers are willing to cover them. To that end, program leaders should monitor and share data on the program’s impact on health outcomes, patient satisfaction, and other metrics of importance to payers.
  • Meet with Federal and State policymakers and regulators: Growing momentum and pressure exist at the Federal and State levels to facilitate the provision of care via telemedicine (including in-home virtual visits). As a result, many policymakers and State licensing boards are considering ways to make it easier for physicians in one State to offer care via telemedicine to patients in another. However, more work is needed to reduce the significant barriers that still remain.
  • Keep local doctors in the loop: Primary care doctors and other physicians providing regular care to PD patients in their local communities must be kept informed of the key findings that come out of every virtual visit.

Spreading This Innovation

As noted, the program began in a 250-bed nursing home and subsequently spread to other settings, as outlined below:
  • Initial implementation in nursing home: URMC began by serving patients with PD in a 250-bed nursing home in New Hartford, NY, an area with no neurologists. This program continues to operate and has expanded over time. 
  • Two-center trial comparing virtual visits with inperson care: Subsequently, PD patients already being served by the two medical centers were given the option to receive virtual visits as part of a small, 7-month trial comparing virtual visits with inperson care.
  • Single-center trial of one-time visit for patients in five States: Beginning in August 2012, a Johns Hopkins Medicine physician began offering a one-time virtual visit to patients in the five States in which he holds a license (California, Delaware, Florida, Maryland, and New York). This trial ran until May 2013.
  • Soon-to-be-launched broader studies: Program leaders recently received approval and funding from PCORI to enroll 200 PD patients who have limited access to neurologists in a randomized trial that will compare usual care in the community with a combination of usual care and virtual visits from a neurologist. Program leaders also hope to secure funding that will allow any PD patient in the State of New York to receive at least one virtual consultation from a specialist, regardless of ability to pay.

Use By Other Organizations

Use of virtual visits for Parkinson's disease and other neurological conditions is common in Canada, where licensing and reimbursement barriers to telemedicine-based care do not exist. In addition, several integrated systems in the United States, including Kaiser Permanente and the Mayo Clinic, use virtual visits for Parkinson's disease patients who otherwise lack easy access to a neurologist; these same systems generally use virtual visits more extensively for patients with other chronic conditions. The Department of Veterans Affairs and many prison systems routinely use virtual visits for patients with a wide variety of chronic conditions.

More Information

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Contact the Innovator

Ray Dorsey, MD
University of Rochester
265 Crittenden Boulevard
CU420694
Rochester, NY 14642
(585) 276-6824
E-mail: ray.dorsey@chet.rochester.edu

Innovator Disclosures

Dr. Dorsey serves on scientific advisory boards for Lundbeck, the Huntington’s Disease Society of America, and the National Institute of Neurological Disorders and Stroke (NINDS). He also serves on the editorial board of the Journal of Huntington's Disease and as a paid consultant to Amgen, Avid Radiopharmaceuticals, Clintrex, Lundbeck, Medtronic, and NINDS. He serves as an unpaid advisor to Vidyo and SBR Health, two companies that have HIPAA-compliant software that facilitates virtual visits. He has received research support from Google, Lundbeck, Prana Biotechnologies, Avid Radiopharmaceuticals, the Agency for Healthcare Research and Quality, PCORI, NINDS, Verizon Foundation, Michael J. Fox Foundation, and the Davis Phinney Foundation. He has filed a patent application related to telemedicine and owns stock options in Grand Rounds (formerly ConsultingMD).

References/Related Articles

Venkataraman V, Donohue SJ, Biglan KM, et al. Virtual visits for Parkinson disease: a case series. Neurol Clin Pract. 2013 Dec [Epub ahead of print]. Available at: http://cp.neurology.org/content/early/2013/12/04/01.CPJ.0000437937.63347.5a.full.pdf+html.

Dorsey ER, Venkataraman V, Grana MJ, et al. Randomized controlled clinical trial of “virtual house calls” for Parkinson disease. JAMA Neurol. 2013;70(5):565–70. [PubMed]

Footnotes

1 Willis AW, Schootman M, Evanoff BA, et al. Neurologist care in Parkinson disease: a utilization, outcomes, and survival study. Neurology. 2011;77(9):851–7. [PubMed]
2 Venkataraman V, Donohue SJ, Biglan KM, et al. Virtual visits for Parkinson disease: a case series. Neurol Clin Pract. 2013 Dec [Epub ahead of print]. Available at: http://cp.neurology.org/content/early/2013/12/04/01.CPJ.0000437937.63347.5a.full.pdf+html.
3 Dorsey ER, Venkataraman V, Grana MJ, et al. Randomized controlled clinical trial of “virtual house calls” for Parkinson disease. JAMA Neurol. 2013;70(5):565–70. [PubMed]
4 Wechsler LR, Tsao JW, Levine SR, et al. Teleneurology applications: report of the telemedicine work group of the American Academy of Neurology. Neurology. 2013;80(7):670–6. [PubMed]
5 Hess DC, Wang S, Hamilton W, et al. REACH: clinical feasibility of a rural telestroke network. Stroke. 2005;36(9):2018–20. [PubMed]
6 Tuerk PW, Fortney J, Bosworth HB, et al. Toward the development of national telehealth services: the role of Veterans Health Administration and future directions for research. Telemed J E Health. 2010;16(1):115–7. [PubMed]
7 Brown EM. The Ontario telemedicine network: a case report. Telemed J E Health. 2013;19(5):373–6. [PubMed]
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Original publication: July 02, 2014.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: July 02, 2014.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.