Note: This article is part one of a two-part series on how ResearchKit will affect both researchers and trial subjects.
Imagine a world where thousands of interested subjects are available at the click of a button and subjects can be monitored day in and day out with very little time and effort from research staff. Apple’s ResearchKit provides the platform to deliver that vision. Whether you’re a single-site research organization, a large-scale academic research center, or anywhere in between, ResearchKit offers the potential to fundamentally change the way you conduct research.
What is ResearchKit?
The most important distinction to make when discussing ResearchKit is that it’s not an app in itself. You won’t find ResearchKit on the home screen of your iPhone. Rather, ResearchKit is an open-source framework that Apple has developed for researchers, allowing them to build applications that gather research data. In the short amount of time since ResearchKit’s inception, we’ve already seen applications built to collect data for a variety of studies, including breast cancer, autism, epilepsy, Parkinson’s disease, and cardiovascular disease..
The versatility of smartphones and tablets gives researchers a unique opportunity to collect valuable data. Some of these capabilities include:
- Gyroscope/accelerometer: detects movement of the device, and can be used to detect both physical activity and stability (example: detecting steadiness in a subject weakened by chemotherapy).
- Camera: used to track physical changes (example: documenting changes in skin blemishes for subjects with melanoma).
- Microphone: used to record subject’s voice, or analyze vocal patterns (example: analyzing Parkinson’s subjects’ vocal strength and stability).
- GPS: allows the app to track the physical location of the subject (example: measuring subjects’ fitness; tracking epilepsy patients and generating a notification if they become unresponsive).
- Bluetooth: can be used to connect the phone/tablet to other devices, including fitness trackers, scales, blood sugar monitors, smartwatches and many others.
Why is ResearchKit significant?
As you may have already heard, the possibilities of ResearchKit are virtually limitless. Alongside the potential for an exponential increase in prospective subjects, one of the most important benefits of ResearchKit is informed consent. We know that adding interactivity to the consent process leads to better-informed subjects. Using the multimedia and interactive functionalities of iPhones, iPods and iPads during the consent process allows researchers to engage prospective subjects and measure their understanding in ways that weren’t possible previously.
When viewed as a concept—and not simply an Apple product—ResearchKit has the potential to revolutionize clinical research. As this type of technology is developed and embraced outside the Apple ecosystem (where subject demographics can be an issue), both the type and quality of clinical research data could improve exponentially. Subjects could be more carefully monitored, and the resources needed to conduct clinical research could be reduced dramatically. Also, as our culture continues to embrace connected devices that monitor us on a daily basis, researchers will have an even bigger, and potentially higher-quality, pool of data to analyze.
Treating the individual
ResearchKit could also lead to more effective, personalized care for patients and subjects. An app developed by UCLA, Sage Bionetworks and Apple follows subjects as they recover from breast cancer. The app, called Share the Journey, is an interactive research study that aims to understand how recovery experiences differ and what can be done to improve the patient’s experience. The app even analyzes data from healthy subjects to ensure that experiences aren’t a result of normal aging. As Stephen Friend, MD, PhD (one of the creators of Share the Journey) has stated, the app will allow researchers to “turn anecdotes into signals.” Understanding these small milestones and setbacks along the recovery process, and being able to apply that knowledge to patients and subjects on an individual level, will greatly improve long-term patient care.
Though ResearchKit is already being used in numerous studies, the technology is still in its infancy. Apple is committed to the continued development of ResearchKit, and researchers will surely find new and exciting ways to use the technology. Also, research organizations are already finding new, more cost-effective options for gathering data that could open the technology to millions more potential subjects.
However, with an exponential growth in subjects comes an exponential growth in concern for privacy among researchers and subjects. In part two of this series, Forte’s Director of Data Analytics Wendy Tate will examine the positive and negative effects of ResearchKit on subject privacy.
Click to view part two in our series on ResearchKit, Should We Be Concerned about Privacy When Using Apple’s ResearchKit?.