“Whether you are healthy or living with Parkinson’s, help provide the voice information needed to build a system to screen for and monitor the symptoms of this debilitating disease. All you need to do: make a low-cost, anonymous, three-minute phone call“
The Parkinson’s Voice Initiative is following in the style of Dr Leslie Saxon’s Every Heart Beat seeking to crowd source 10,000 patient voice recordings for research into developing a voice analysis test for Parkinsons.
To take part participants only need to be able to make a 3 min call to a standard rate telephone number and hopefully the service will be inundated after next weeks TED Global spotlight (the BBC have announced that project Director Max Little will be an opening speaker at the event).
I had a few thoughts about the initiative:
Optimistic that they’ll get results
I think the way these disagnostic tests will be able to work (eg. analysis of the normal calls you make) will really highlight the important contribution that can come from mobile network analysis and this will in turn make obvious the flaws in the “device based” definitions of mHealth like that used by the UN, on wikipedia, etc.
Ease of use
I found the service really easy to access and it only took me 3 and a half minutes to contribute. I’m not a big fan of IVR systems so I’m probably very sensitive but I thought I detected a small glitch when I was responding to the “say ahhhhh and hold it” prompt (the system interrupted my reply and told me to say it again as though it couldn’t hear me) but other than that it was really easy to contribute to.
Who owns the data?
I’m surprised how few crowd sourced initiatives seem to be addressing the challenge of how the data they’re collecting can be used. In the long term I can imagine patients and patient associations might feel exploited by private companies that might go on to exploit the data with commercial products.
Fortunately I can also see many ways to manage this eg. by openly sharing the raw data collected so patients and other researchers can also benefit and learn from it.
Fast forward a few years and it’s quite easy to think there might be an app that could allow you to test a stranger by just having them converse with you.
I can imagine this will introduce new ethical challenges that we should be mindful of eg unscrupulous telesales callers using this sensitive medical info to profile their customers.
I can imagine that beyond an early diagnostic test researchers will be well placed to develop personalised support services for patients who are taking prescribed medications and making new insights into the progression of the disease (and activities that exacerbate it etc).
How cool would a Parkinsons Voice mobile app be if it could just listen to a patient to completely optimise their medication schedule?
Scope to expand
I’m hopeful that some of the big research charities will get behind these crowd sourced patient data initiatives as I see it as a great way for them to drive even further participation in their work. For example imagine the potential for a research charity like Parkinsons UK to invest in or associate themselves with this groups work. In 2010 they raised £20m mostly from voluntary donations so could you imagine the potential reach they’d also have for donors to also directly contribute and get involved in their research by encouraging their friends and families to call into the service etc?
I can imagine with such support this initiative could be expanded significantly to tap into the opportunities offered by donors using their own smartphones to capture even richer patient data eg. touch screen and accelerometer analytics, interactive patient history taking questionnaires, etc.