While clinical trial teams are facing unprecedented challenges as a result of COVID-19 and some have halted recruitment, many are exploring ways to keep research moving forward. One way is through telehealth, which refers to virtual two-way communication between a health care provider and patient, using technology such as phone or video.
The Michael J. Fox Foundation (MJFF) is committed to supporting trial teams in this effort to maintain the momentum in Parkinson’s research.
Though telehealth wasn’t in wide use for Parkinson’s before the pandemic, MJFF has invested in research showing it can be useful in research and patient care. Our landmark study, the Parkinson’s Progression Markers Initiative (PPMI), for example, is now exploring phone visits for study participants over the next couple of months. And the following MJFF-funded studies, which we are sharing with other trial teams, demonstrate how telehealth can work for Parkinson’s disease (PD)
- In a study led by Ray Dorsey, MD, MBA, at University of Rochester, investigators used Fox Trial Finder (MJFF’s online study matching tool) to identify 204 volunteers with Parkinson’s and examine the use of video conferencing between participants and specialists. They found that the specialists were able to confirm self-reported diagnosis in participants with Parkinson’s over a broad geography, and both specialists and participants reported satisfaction with video conferencing.
- In another study led by Dr. Dorsey, researchers evaluated remote recruitment and assessment of people with Parkinson’s who have participated in direct-to-consumer genetic testing (i.e., 23andMe). They connected with 50 participants through video conferencing and asked them to complete a survey. They were able to confirm self-reported diagnosis and agree on family history and age of symptom onset. More than 80 percent of participants said they’d be more willing to participate in studies if there was a remote option.
- Roseanne D. Dobkin, PhD, at Robert Wood Johnson Medical School, led a study that evaluated the use of personalized phone-based cognitive-behavioral therapy by examining 72 people with Parkinson’s and depression. Over the course of three months, the researchers found improvements in depression, anxiety and quality of life. The participants were able to maintain these improvements six months later.
- A study led by Lana Chahine, MD, University of Pittsburgh, found that patient-reported outcomes obtained through Fox Insight, MJFF’s online clinical study, were similar to patient assessments conducted at in-person studies.
This research shows that telehealth may be a good option for some and can provide another model for research participation. In addition, MJFF is a collaborator of AT-HOME PD — a Parkinson’s study that conducts remote assessments — which is sharing resources and best practices for trial teams on their web page.
The MJFF Public Policy team has been closely monitoring access to care/telehealth issues for people with Parkinson’s. In response to the COVID-19 pandemic, the Centers for Medicare & Medicaid Services (CMS) have expanded coverage for telehealth. This means people with Medicare can now stay home and use video technology — apps such as FaceTime, Facebook Messenger video chat, Google Hangouts video, Zoom, and Skype — for doctor visits and other medical check-ups. Learn more in this blog.
