Dr. Ray Dorsey is David M. Levy Professor of Neurology and Director of the CHET at the University of Rochester Medical Center. Dr. Dorsey is helping investigate new treatments for movement disorders and improve the way care is delivered for individuals with Parkinson disease and other neurological disorders. Using simple web-based video conferencing, he and his colleagues are seeking to provide care to individuals with Parkinson and neurological diseases anywhere that they live.
Dr. Dorsey previously directed the movement disorders division and neurology telemedicine at Johns Hopkins and worked as a consultant for McKinsey & Company. He completed his undergraduate studies at Stanford University, medical school at the University of Pennsylvania, and business school at the Wharton School. Dr. Dorsey’s research has been published in the leading medical, neurology, and economic journals and has been featured on National Public Radio, The New York Times, and The Wall Street Journal.
The following has been paraphrased from an interview with Prof. Ray Dorsey on July 12th, 2018
(Click above to listen to the full audio version or click here for a downloadable version)
What advice do you have for others trying to implement patient-centered approaches to healthcare?
It starts with the needs of the patient. If you think about the way we deliver care for people with Parkinson’s disease, it couldn’t be done much worse. We ask what are usually older individuals with impaired mobility, living in suburban or rural environments, to be driven by over-burdened care givers often long distances to receive care every once every 3-6 months. Instead, clinicians should be delivering care to patients on their terms. My colleagues and I have been using video conferencing to connect to patients in their homes and we have had great success. Other colleagues are doing us one better by actually visiting patients in their home.
Have you experienced any push-back or criticism regarding this approach from other healthcare providers?
Our current setup is designed to optimize efficiency from the standpoint of clinicians. We ask patients to go to holding cells and wait there until the doctor is ready, and then they get processed, much like cattle, some places even assign a number, to then be seen for a very fixed period of time before being told when to come back. We now have technology in the 21st century to allow us to deliver care wherever people live and should be taking advantage of that.
Could you talk about your work with Apple and the mPower program that they developed?
In 2015 Apple created an open source platform to use smart phones to conduct studies. A mathematician named Max Little demonstrated a decade ago that sophisticated analysis of voice recordings could differentiate people with PD from those without. We used that to build an app to assess people with PD, which grew into mPower, a study that allowed people to measure their voice, balance, gait, and tapping speed in real time and get feedback on how they were doing. That has lead to clinical studies using these kind of digital biomarkers that can objectively assess how people are functioning in real world environments to better understand what makes them better or worse.
Are there any other technologies or innovations that you are particularly excited about?
We work with a company called MC10 that is developing a wearable adhesive sensor that can be placed on the chest or legs. Even in clinical trials, at best we might be able to observe how patients are doing every 4 weeks, but we have little idea how this disease affects people in their daily normal lives. This has been pointed out well by Sara Riggare through her research.
Do you see some of these methods for tracking, like the Mobile Parkinson’s Disease Score (mPDS), being used more for clinical trial purposes or by neurologists for regular patient assessments?
The mPDS takes a variety of smartphone based assessments and combines them to give a score from 0 to 100. It is continuous, objective, there’s no placebo, and it can be performed by anyone with a smart phone anytime anywhere. We showed that over a six month period we could get a better idea of how a patient was doing than just the standard clinical assessments. I think it will be used in clinical trials to measure the efficacy of various interventions and eventually by individuals to give them more control over their own health.
If you were a patient, what would you be doing to monitor your own health and move the system forward?
I think there needs to be a lot more advocacy in the PD community. HIV activists transformed what was a fatal condition in 1981, into a chronic condition with near normal life expectancy by 1996. Today, as a result of their advocacy, the NIH funds three billion dollars of HIV/AIDS research. In comparison Parkinson’s disease, which has half as many people affected, gets less than 200 million dollars in funding. There is too much silence in the PD community. We are in the midst of a Parkinson’s disease pandemic, the number of people with Parkinson’s disease around the world has doubled over the last 25 years and will double again over the next 25 years. We need to significantly increase the amount of resources devoted to this disease and get serious about preventing it by banning certain chemicals, pesticides and solvents. We need to improve care for people living with the condition through better advocacy. No one cares what a neurologist says, but when six million people around the world with the disease start to speak up, that is when things will change.
Click here to learn more about the work of Prof. Ray Dorsey or watch his appearance here on Parkinson TV…