Telemedicine study funded by the Davis Phinney Foundation leads to breakthroughs for people with Parkinson’s

Telemedicine appointment

In 2012, long before healthcare had to adapt to the COVID-19 pandemic, the Davis Phinney Foundation funded one of the first studies on telemedicine and its impacts on people’s health with Parkinson’s. Nearly nine years later, its findings are more relevant than ever. The investigation became a powerful springboard for future research on telemedicine and Parkinson’s. The outcomes of the many subsequent studies can help millions of people with Parkinson’s live well today and in the future.  

Here, we’ll take a look at how the 2012 study set in motion a path to more accessible care for people with Parkinson’s. To learn more about each of the studies, click the icon next to the description.

2012
Remote Access to Care, Everywhere, for Parkinson Disease (RACE-PD)

Led by Drs. Ray Dorsey and Kevin Biglan at the University of Rochester, the 2012 observational study funded by the Davis Phinney Foundation assessed the feasibility, impact, and acceptability of using telemedicine to remove barriers to care in Parkinson’s. Participants with Parkinson’s living in New York, Maryland, Delaware, California, and Florida used video conferencing for a one-time visit with a movement disorder specialist.

“The Davis Phinney Foundation’s mission is ‘helping people living with Parkinson’s and their caregivers find new ways to live well today,” as well as giving people with Parkinson’s the tools they need to ‘take charge of this disease, rather than be defined by it,'” the study’s authors wrote. “However, many patients are not able to receive the care they need to take charge of their condition and live well today. While the global burden of Parkinson’s is projected to increase 111% by 2030, access to care continues to be limited due to distance, disability, and distribution of doctors. Forty percent of Medicare beneficiaries with Parkinson disease have never seen a neurologist, and statistics show that patients who see a neurologist are less likely to fracture their hip, less likely to be hospitalized, less likely to be placed in a nursing home, and less likely to die. Many patients are not receiving the tools and advice they need to better manage their disease and improve their quality of life.”

The researchers hypothesized that telemedicine consultations with a movement disorder specialist would be feasible on a national, multi-center level. These virtual visits would improve the quality of care and would be acceptable, and potentially preferable, to in-person visits for people with Parkinson’s.

Findings from the study supported both hypotheses, showing that telemedicine can provide the Parkinson’s community with specialized, convenient, and comfortable care. People with Parkinson’s saved time by reducing travel, felt satisfied with their care, and experienced a similar quality of life to those who received in-person care.
2014
Virtual House calls for Parkinson Disease (Connect.Parkinson)

In 2014, Dr. Dorsey and his team led the Connect.Parkinson study, funded by PCORI. The authors wrote that while there was a rising interest in improving care for people with chronic conditions, access to care remained limited by distance, disability, and distribution of doctors. Noting that small-scale studies of Parkinson’s suggested that telemedicine is feasible, offers similar clinical outcomes to in-person care, and reduces travel burden, the researchers conducted a randomized comparative effectiveness study, comparing typical care services in the community to typical services plus virtual house calls with a Parkinson’s specialist. Data from the study showed clear support for the positive findings of telemedicine from the RACE-PD study.
2015
TELE-MED Act 

Findings from the RACE-PD and Connect.Parkinson studies helped to encourage removing barriers to telemedicine, such as licensing restrictions and Medicare reimbursement. For example, the TELE-MED Act of 2015 proposed federal legislation allow certain providers to provide services in a different state. The act was presented with support from the RACE-PD study.
2018
Do Video House Calls with a Specialist Help Get Care to People with Parkinson's?

Building on the data from their previous studies, Dr. Dorsey and his research team conducted another PCORI-funded study to determine if video house calls with specialists were convenient and improved people’s quality of life with Parkinson’s. They also sought to determine whether the video house calls improved care quality, reduced travel time, and reduced caregiver burden.

The study, which included 195 people with Parkinson’s and 111 caregivers, found that video house calls were a convenient way for people with Parkinson’s to receive specialized care. Most study participants reported being satisfied or very satisfied with the care they received during video house calls. Also, compared with people with Parkinson’s who had in-person visits at clinics, those who used video house calls spent less time traveling to doctor visits and spent more time talking with specialists during visits.
2020
A New Day: The Role of Telemedicine in Reshaping Care for Persons with Movement Disorders 

Along with Drs. Bas Bloem and Michael Okun, Dr. Dorsey reported in Movement Disorders, the official journal of the International Parkinson’s and Movement Disorder Society, how telemedicine, “first described in this journal a generation ago, emerged as the dominant means of providing care” during the COVID-19 pandemic. “As we adjust to a new normal, we should focus future care not on clinics but patients. Their needs, guided by clinicians, should determine how care is delivered, whether in the clinic, at home, remotely, or by some combination,” they wrote. By using the Internet, video conferencing, smartphones, and sensors, health care providers can go to people with Parkinson’s instead of the other way around. Widely available devices can help facilitate diagnoses, and novel technologies can help measure Parkinson’s in new ways.

“These approaches, which extend to education and research,” they wrote, “enable a future where we can care for anyone anywhere and will help us stem the tide of Parkinson’s.”
2021
Give a Dime about Parkinson's 

This year, Drs. Dorsey, Bloem, and Okun, along with fellow Parkinson’s expert Dr. Todd Sherer and a coalition of PD Avengers, are spearheading a “Give a Dime about Parkinson’s” Red Letter Campaign. Referencing Franklin Roosevelt’s March of Dimes to End Polio campaign of 1938, the “Give a Dime” founders explain that because Parkinson’s is the world’s fastest-growing neurological disease, a similar campaign and demand for action is warranted.

The Red Letters, which participants will send to the White House, make three requests: a ban on paraquat, chlorpyrifos, and trichloroethylene — three chemicals that increase the risk of developing Parkinson’s; making permanent Medicare’s coverage of telemedicine; and increasing Parkinson’s research funding ten-fold.

The Future of Telemedicine   

Studies like those mentioned above and numerous others have now shown the effectiveness of telemedicine. Outcomes and data from the studies continue to be overwhelmingly positive, highlighting multiple benefits of telemedicine compared to in-person-care, including reduced commute time, higher patient comfort, greater convenience, increased confidentiality of services, increased access to care, a reduction in medical center transmitted illnesses, fewer missed or canceled appointments, and higher adherence to therapy.  

Get Involved  

One of the silver linings of the pandemic has been greater access to telehealth. However, its future is still uncertain. Congress is now deciding whether certain types of telehealth coverage should be permanent. Please consider emailing your Senators and Representatives and ask them to make telehealth rules permanent so people living with Parkinson’s can have access to providers they otherwise might not be able to see in person.  

Please request and send a Red Letter to the White House and join the free “Give a Dime about Parkinson’s” Red Letter event on March 16. Hear the latest updates from host Larry Gifford, co-founder of PD Avengers, and Drs. Dorsey, Bloem, Okun, and Sherer; ask questions, and learn how to take action.  

Support Our Research   

At the Davis Phinney Foundation, we focus our research program on improving quality of life. Studies like RACE-PD help people with Parkinson’s live well in the immediate future. Even better, this initial study progressed to late-stage clinical research, received NIH and PCORI funding, and is becoming a therapy that is being used today by people living with Parkinson’s. You can play an essential role in this research by supporting our Quality of Life Research Fund. Click here to learn more about how your contributions help our Science Advisory Board say “yes” to more promising research projects that change people’s lives. 

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