Mathematician Max Little is launching a project that aims to literally give Parkinson’s disease (PD) patients a voice in their own diagnosis.
Patients Voice Analysis (PVA) is an open science project that uses phone-based voice recordings and self-reported symptoms, along with software Little designed, to track disease progression. Little, a TEDMED 2013 speaker and TED Fellow, is partnering with the online community PatientsLikeMe, co-founded by TEDMED 2009 speaker James Heywood, and Sage Bionetworks, a non-profit research organization, to conduct the research.
The new project is an extension of Little’s Parkinson’s Voice Initiative, which used speech analysis algorithms to diagnose Parkinson’s from voice records with the help of 17,000 volunteers. This time, he seeks to not only detect markers of PD, but also to add information reported by patients using PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS), a tool that documents patients’ answers to questions that measure treatment effectiveness and disease progression.
“It’s a much more subtle problem,” Little says. Right now, PatientsLikeMe has some 6,500 PD patients using its platform, and he hopes response will mimic his earlier venture, which drew many thousands more volunteers than he had anticipated.
“Any way in which participants can use their misfortune to help others in future is something empowering. In diseases like Parkinson’s, because there’s no cure, people are generally told to sit tight. It’s awfully frustrating and it’s not good enough,” he says.
Another hoped-for end result is to give patients tools for self-reporting. That includes rethinking the current jargon-laden progression scale with language patients themselves might use. (The latter is part of a larger effort by PatientsLikeMe, as the company’s Vice President for Advocacy, Policy and Patient Safety, Sally Okun, explained at TEDMED 2013.)
“The classical scale is rarely used in clinical practice. It is technical jargon meant for the clinician to understand, but is hard for individual users to grasp. PatientsLikeMe has brought it to the masses,” Little says. With the PVA system, patient voice samples will be linked to their self-reported symptoms, so they can monitor changes over time, perhaps contributing to remote (and certainly less expensive) diagnosis.
As openly shared information, the collected data has potential to help vast numbers of individuals by tapping into collective ingenuity. Little has long argued that for science to progress, researchers need to democratize research and move past jostling for credit. Sage Bionetworks has designed a platform called Synapse to allow data sharing with collaborative version control, an effort led by open data advocate John Wilbanks.
“If you can’t share your data, how can you reproduce your science? One of the big problems we’re facing with this kind of medical research is the data is not open and getting access to it is a nightmare,” Little says.
With the PVA project, “Basically anyone can log on, download the anonymized data and play around with data mining techniques. We don’t really care what people are able to come up with. We just want the most accurate prediction we can get.”
“In research, you’re almost always constrained by what you think is the best way to do things. Unless you open it to the community at large, you’ll never know,” he says.
– Stacy Lu
Join TEDMED’s Google+ Hangout Tuesday, Feb. 25 at 12pmET to discuss crowdsourcing and other research innovations with Dr. Little and other special guests.