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Technology helps people with Parkinson’s

When there is no cure for a chronic disease, those who have it can sometimes feel that there’s nothing they can do, area experts say.

However, adding technology to the problem can help speed up the road to a cure.

That’s what leaders at the University of Rochester hope is true of mPower, an app created to help people with Parkinson’s disease monitor their health.

It is one of five apps released by Apple Inc. as part of its ResearchKit platform, which helps users track data and become participants in health trials or studies, officials said.

“We focus on trying to enable anyone anywhere with Parkinson’s disease to receive care, and we try to enable anyone anywhere with Parkinson’s disease to participate in research and then ideally anyone anywhere to benefit from resulting therapeutic advances,” said Ray Dorsey, David M. Levy Professor of Neurology and director of the Center for Human Experimental Therapeutics at the University of Rochester Medical Center.

The app allows patients to remain in the comfort of their own homes while still monitoring their health. The technology goes both ways—doctors can see patients in new ways as well.

“Whether it’s us or family members, the way we want to receive care is not to drive on a snowy Rochester day to go to the clinic and spend two hours to see the doctor for 20 minutes,” Dorsey said. We want “to have that doctor come see us in our home and maybe do a three-way call so if you’re caring for your mom you can see the doctor while you’re working and your mom is in her home. We’re trying to provide patient-centered care rather than institution-centered care.”

A smartphone’s microphone, motion sensors and touchscreen can help individuals take charge of their health—including by using it to tap keys or to monitor speaking.

“The thing I liked the most is that you feel like you are engaged in your care,” said Jody Kearns, who uses the app. “There is nothing you can do to help Parkinson’s disease but take medicine—which sometimes doesn’t work. This makes you feel like you are doing something instead of sitting on the sidelines.”

More than 15,000 people nationwide have downloaded the app. Similar research apps have been made for asthma, breast cancer, cardiovascular disease and diabetes.

Sage Bionetworks, a Seattle-based non-profit, developed mPower.

“The richness of the data that are derived from these large cohorts has also given glimpses into the variability of symptoms between people and within a single person in their day-to-day lives,” said Andrew Trister, the medical monitor of the study and leader of the analysis team for Sage Bionetworks. “We are excited to continue to explore how this variability might be affected by normal part(s) of life as well as medical interventions. The next release of the app will have new study questions aimed at gaining a greater understanding of this variability.”

The volume of users helps inform the disease’s evolution.

“People have given us 20,000 suggestions on what makes them better or worse,” Dorsey said. “One thing that they said made them better or worse is weather. We didn’t even know that was a factor until we asked a question and we got 20,000 responses.

“There’s tons of things that we’re learning that we were just ignorant of,” he added. “We hope that there’s tons of things that individuals with these conditions are going to learn that they didn’t know previously.”

The goal is to help those who need care but do not live in the area. While nothing can match seeing a patient in person, mPower and other forms of technology can only help, Dorsey said.

“Providing care in the home virtually is not the same as my providing care to them in person,” he said. “The gold standard is the doctor shows up at the doorstep to provide care to you in your home. So there are tradeoffs between that and coming into clinic to receive care, but for people who live in Corning or Binghamton or Avon, we can now provide care to those individuals.”

With Rochester’s tech background, the business community can merge with the medical community in so many ways, Dorsey said.

“We’re eager to work with people in the Rochester business community to help make these models of care,” he said. “A tech-oriented entrepreneurial culture—what better place to say that we’re making health care available to anyone regardless of where they live? Why not Rochester?”

3/18/2016 (c) 2016 Health Care Achievement Awards Special Section. Rochester Business Journal. To obtain permission to reprint this article, call 585-546-8303 or email rbj@rbj.net.

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