I first became interested in research when I came to the University of Rochester and had the great privilege of working under Dr. Ira Shoulson. He and his colleagues have led the way in terms of conducting clinical trials for Parkinson's disease and Huntington's disease and other neurological disorders. And their enthusiasm and their success attracted me to try to do the same. We recognize that many of the ways we currently assess neurological disorders like Parkinson's disease are subjective, insensitive, and episodic. And we said, there are ways to do high frequency, objective, sensitive means of measuring Parkinson's disease symptoms. And every day, we carry around with us a little mini computers that we call smartphones and we decided about five years ago to investigate, whether these smartphones could help measure symptoms of Parkinson's disease. So working with a smart mathematician in the United Kingdom named Dr. Max Little, we tested whether a simple smartphone application that had people say, 'aaah', that measured how fast they could tap their fingers on the screen, measure their gait and balance, could be used to differentiate individuals with Parkinson's disease from those without. And it turned out, that a smartphone could do that quite well. We then have the good fortune to work with Apple on developing a smartphone research application on their open source platform called Research Kit and that's smartphone application called mPower can measure people's voice, their speed at tapping, their cognition, their gait, their balance, as well as passively monitor their activity in GPS. And it turned out, that the first day that this application was released to the public, over 2,000 people signed up to participate in the study. And at its peak, over 15000 people from all 50 states in the United States signed up to engage in research on their own terms using their own devices. There's a fundamental flaw in the way we provide care to individuals with Parkinson's disease and just in care in general, with healthy clinicians, generally, ask sick patients to come see us on our terms. Instead, we, the clinicians should be seeing the sick or those with Parkinson's disease on their terms. Unfortunately, here early in the 21st century, we have the tools and technologies to do that. You're doing a massive online course to educate people around the world, without asking them to come see us and we can do the same thing for providing care. So we've been using video conferencing to provide care to individuals with Parkinson's disease directly in their home, with support from the patient centered Outcomes Research Institute. We recently completed the first national randomized controlled trial of telemedicine for Parkinson's disease. We showed one that it's feasible to connect to people directly in their homes without having them to come see us, to be sure that each visit saved patients and their caregivers on average about 170 minutes of time at 100 miles of travel. We showed that patient satisfaction was about 97% with these visits. And the study that patients said that they generally preferred seeing their virtual doctor that they never met before, more than their local Parkinson's disease clinician. We first got interested in telemedicine when in a nursing home in New Heart for New York, population 20,000, contacted my colleague Dr. Kevin Biglan and me about 10 years ago, and they said they had about 50 residents with Parkinson's disease and no one to care for them. And rather than asking individuals who are in a nursing home with Parkinson's disease to come by ambulance or by other means of transport to come see us at the University of Rochester, he asked, can we see them over the Internet? Essentially, it's over HIPPA compliant forms of Skype. And we said, yes, and that started us on this journey that takes us to the present day. Right now, we're offering a program called Parkinson's Disease Care New York and which we offer any New Yorker with Parkinson's disease the ability to see us remotely in their homes for free. So anyone with a given condition, Parkinson's disease at any given geography, the state of New York can receive care regardless of who they are, where they live, or their ability to pay. I became interested in Parkinson's disease because I had great teachers who were passionate about the field, and that was at the University of Pennsylvania, at Rush University in Chicago, and then here at the University of Rochester. Parkinson's disease is a very, in 2016 and 2017, very clinically oriented field, you form relationships with patients. And for Parkinson's disease, you can often make them substantially better, which is very rewarding. I probably, don't get too hung up on, like terms and I just say, we're trying to take interventions that we know can be effective and apply them to broader populations, so we first study telemedicine in a nursing home, we even did a small randomized controlled trial, and then we did this national randomized controlled trial, and now we're doing this an issue of Parkinson's Disease Care New York to make it available to anyone in New York State. So I think it's the ability to take applications or interventions whether the basic sciences in the clinical sciences and apply them to a broader population. The people who would be the ultimate judges of whether the interventions that we're working on, whether that's telemedicine or smartphone applications whether improves their health or those individuals themselves. And so in our national randomized controlled trial of Parkinson's disease, we asked individuals to rate their health at the beginning of study relative to the end of the study, and substantially, greater proportion of individuals said that their Parkinson's disease symptoms got a lot better. At the end of the study were those who receive the virtual research visits. So that's some evidence that these interventions are making a difference. Another big signal that these interventions are making a difference is that we had over 11,000 individuals from 80 countries in 50 states come to our one-page website to learn more about our telemedicine study. And nearly a thousand individuals signed up to participate for our 200-person study. So if people vote with their feet, I think they're clearly saying that they want a more convenient way of receiving care, a way to receive care on their terms, rather than on the terms of an institution. And these are signals that these things are improving their health, or meeting their needs in novel ways. For the smartphone application, we think this is a means by which individuals can gain better control and understanding of their Parkinson's disease. They can do these assessments of the speed of tapping, and gait, and posture, and they can see the results in real time on their smartphone. They don't have to go to a clinician to find out the results, they can find that out themselves, they can see what happens after they take medication, they can see what happens to them on a snowy day, they can see what happens to them after they exercise, they can see what happens to them after taking medication and make their own judgments. And so individuals are empowered. Hence, the name by the data and by their participation in research studies. And again, they can do it anywhere anytime. And they're in control.
