Quantified self and open research

When Apple released its latest iOS with the “open” Apple Developer Healthkit to help promote the collection of data on mobile devices and have that data reach research scientists, I was encouraged by the potential. So many people have mobile devices that are already collecting health data, wouldn’t it be great if that data could easily be shared with researchers? Apple released the new Developer Kit with a few apps, one of which was targetted directly to those with breast cancer (Share The Journey). I downloaded the app, but was quickly disappointed. The background information didn’t allow for me to say that my treatment was “neo-adjuvant” chemotherapy – which is becoming more-and-more common – especially for treatment of aggressive breast cancers. When I submitted the feedback, I received a reply that the app used “validated measures” – which translates to “we used someone else’s data collection tools” – but the app authors did not account for new treatment regimes. Any data that I added to the collection would be invalid, but there would be no way for them to know that my data was not valid, because there was no way for me to say that I didn’t “fit” within the background survey. So, what I see with this app is garbage in = garbage out. I deleted it.

I was Facetime’d into a presentation yesterday on technology, big data, and medicine. When I asked the presenter (Dr. Pavel Andreev) about the Apple Research Kit, his comment was that although it might be “open”, it is created by a company and limited to one platform. There is hesitance to build anything for a single platform (e.g. biased samples), but the bigger issue is that if there is no money in the platform, then the company could drop it. That is, if it doesn’t help Apple sell devices, then we may find that it isn’t supported in the future. For this type of application, an open-source / crowd-supported platform is preferred.

I was really excited to hear about the Open Research, Open Data, Open Humans project (OpenHumans.org) – posted on the Quantified Self Blog today. I love the idea of the Open Humans project. It seeks to “break down barriers that make it difficult for willing individuals to access and share their data with researchers” (OpenHumans.org Press release March 24, 2015). Throughout my cancer treatment I collected a lot of data about myself. I always felt like it was such a waste that there was no way for the data to get into the hands of researchers. The academy (higher ed in general) spend so much time and energy protecting the privacy of individuals in research studies, that they do not allow for research participants to openly share their information. The model behind the Open Humans project is based on the premise that some people do want to openly share their information. Sadly, the initial studies are only open to US Citizens or permanent residents (I’m a resident alien). This is one project that I’ll be keeping my eye on.

Would you be willing to openly share your data in the OpenHumans project?

 

 

 

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