John Turner believes that people with Parkinson’s disease have a responsibility to join the search for a cure. John himself has a background in computing and mathematics and was diagnosed with Parkinson’s in 2005. “People who have Parkinson’s have a huge range of skills,” he says. “If we’re organized, we can use those skills to do research and help ourselves and others.”
To this end, John has launched an online tool intended to empower those with Parkinson’s to join the search for a cure. Dubbed PDMeasure and located at parkinsonsmeasurement.org, the tool collects Parkinson’s-related data from its users. It combines survey data such as diagnosis date, medication and handedness with data generated by a simple motor skills test that users take online.
The data serves a dual purpose. First, it helps those with Parkinson’s measure their anecdotal experiences. “One of the things that is so frustrating … people often say that they’ve done something that’s made them better, but it’s difficult to know what they mean by ‘better.’ It’s difficult to know the magnitude of the change,” says John. Using a simple side-to-side tap test which measures the number of times someone can type a “q” key followed by a “p” key with their index finger in 30 seconds, users can see if a particular medication, supplement or some other type of treatment has a measurable outcome.
Second, as the number of PDMeasure users grows, the combined data may be useful to the broader research community. “It’s a great opportunity to collect as much symptomatic data from people as possible and then make that data open to anyone who wants to look at it, data mine it and see what comes out of the analysis,” he says.
John is an active contributor to the Parkinson’s disease section of the online community NeuroTalk (neurotalk.psychcentral.com) where the discussion often turns to the effectiveness of new and alternative Parkinson’s treatments. “Every day someone comes up with a new idea. Some ideas stick around for a while, some disappear and some cycle back every few months,” he says. Without analyzable data, however, these new ideas seldom move forward. “Collecting data from just 50 or 100 people would be a huge advance over what we have now,” he says.
John acknowledges the criticism of this approach to collecting data. Given that users are self-reporting and entirely anonymous, PDMeasure has no way to verify that those taking tests and answering surveys are being accurate, truthful or even have Parkinson’s disease. “This is a fair point,” he says. “But there is nothing to be gained from corrupting the database. I think it’s very unlikely.” Also, John believes that software mechanisms can be devised that can weed out malicious data. “Part of the data analysis is to look for rogue data,” he says.
Anyone with or without Parkinson’s disease can use the tool at parkinsonsmeasurement.org. Registration is free and anonymous and does not require giving an email address. John is making both the data collected by the tool and the software itself open and available for anyone to download. For more information, contact him at firstname.lastname@example.org.