What the Apple ResearchKit Announcement Really Means to Rare Disease Research

I’m an Apple fan, and their announcement about ResearchKit and how it will help to spur disease research is music to my ears. But after the excitement and sexy presentations are over, what does Apple’s announcement really mean for rare disease research?
Let’s first look at what Apple announced: A toolkit that developers can use to build research study specific applications that integrate data collected on iPhones, a standardized process of capturing informed consent, gaining permissions from the user about sharing data collected on other iPhone apps, and collecting responses to surveys.   Awesome.  But before we get too excited, let’s look at what ResearchKit is not. 

 It is not an out-of-the-box research tool

Looking closer at the announcement reveals that this is not an out-of-the-box solution for performing research on mobile devices.  It is a toolkit, which means it is a library of computer code that app developers can use to build other iPhone apps.   This is hugely beneficial, but it is not going to be as simple as calling your IT department and asking them to implement ResearchKit for your research study.  You will need to build and deploy an iPhone app, which is not a trivial task. 

 It is not a data repository

You will need to build a data repository, presumably in the cloud, where the data you are collecting on the phone is collected for analysis.   Rare diseases already have the problem of data fragmentation, multiple registries and research studies collecting information directly from patients, most of which ends up in proprietary databases accessible by only the privileged few.  Researchers can easily deploy and collect this data on a study-by-study basis, but there is no ability to aggregate the information globally, further fragmenting of the patient population data will occur and more dead-ends of research data will proliferate.

It is not device independent

HealthKit and ResearchKit operate on iPhones only – not on websites, or Android phones – just iPhones.  If a researcher implements an iPhone app exclusively to collect data, they are introducing a level of bias by virtue of ignoring that iPhones account for about 40% of phones in the US and only 18% of smartphones worldwide – and they continue to lose market share.  Research predicts the global reach of iPhones in a couple years will be about 15% market share.
I am a huge fan of Apple, and I applaud their entry into the research space.  The iPhone has shepherded in an entirely new way of thinking about how we collect data directly from the people most affected by disease – the patient.  PatientCrossroads is actively integrating these technologies and we are grateful to Apple for providing the opensource components necessary to take advantage of these technologies.  However, HealthKit and ResearchKit are tools, not end products that can be deployed instantly and the problem of sharing and aggregation of personal health information becomes even more important in this new personalized health data collection world.
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