By Karen Weintraub
Parkinson's disease is like a "rolling wave" of ever-changing symptoms, not a lightning strike of different events, says its most famous patient, the actor Michael J. Fox.
So when doctors ask for a list of recent symptoms, they miss a lot of the subtleties of the progressive disease.
Hoping to change that, the Michael J. Fox Foundation and Intel announced Wednesday that they are collaborating on a project to track Parkinson's patients 24/7.
Using a device like the popular FitBit (a wristband activity monitor), patients will be tracked over the course of their day, as their medication kicks in and wears off, as food hits their system, as their environment changes and as they sink into sleep. The data generated will be so enormous that Intel's digital expertise will be needed to make sense of it, both organizations said.
The information should lead to new insights into a disease diagnosed in about 60,000 Americans a year, leading to tremors, paralyzing stiffness and physical awkwardness, among other symptoms.
"The answers are within us," Fox said in an interview. "We just need to find a way to let people into our brains both literally and figuratively to help us figure this out."
The collaboration, which started with a small pilot trial of 25 people this spring, aims to measure patient gait, tremors and sleep patterns, among other metrics, and stream the data in real time to the cloud. Intel, which provided the servers and software to collect and manage the data, is also developing algorithms to help analyze it, said Diane Bryant, senior vice president and general manager of Intel's Data Center Group.
Former Intel CEO Andrew Grove has had Parkinson's since 2000, and initiated the discussion between the company and the foundation, Bryant said.
The company isn't disclosing how much it is investing in the project, but Bryant said that costs for this kind of effort have fallen dramatically in recent years. "Ten years ago it would have been ridiculous to consider" a project like this, she said.
The collaboration is Intel's first step into health care, but it likely won't be the last.
"It's a wonderful first step for us," Bryant said. Health care lends itself well to so-called big-data analytics, because there is so much information to collect on a patient, from symptoms to genetics to lab results.
Fox Foundation CEO Todd Sherer said doctors score the disease's severity based on how the patient feels during a visit – but symptoms can change minute by minute, from near normal to completely disabling.
"If the doctor is running 15 minutes late, the assessment could be completely different than if they'd seen the disease 15 minutes earlier," Sherer said.
Also, he said, sometimes patients minimize symptoms for their doctor, or time their medication so they'll perform well during the visit. "The doctor might say everything's doing great, and we'll hear from the spouse: 'You should have seen them yesterday.' "
The same problems also make research into the disease more difficult. It's hard for researchers to get a realistic view of whether a treatment is effective, if they only get occasional snapshots of a patient.
The new devices will therefore provide a much more realistic – and objective – view of the disease than has been possible before, Sherer said.
If shown effective during pilot studies, he said, the devices will likely be used both for clinical research trials – in which the patient data will be anonymous – and, say, for a week before a doctor's visit, to provide an update on a patient's disease.