These days, apps are ubiquitous as tools to improve health and fitness. But Apple thinks it can do more than that and even take medical research to a new level, thanks to its power to crowdsource subjects in clinical tests and monitoring studies. Can the company's recently-announced ResearchKit, an open source software framework for researchers, be the medical study game changer that it's aiming to be?
Strength in numbers
The first thing that comes to mind with ResearchKit is the sheer quantity of information the studies will be able to amass. A vast range of data can be accessed from the Health app, such as weight, blood pressure and glucose levels. Apple introduced the HealthKit software framework with iOS 8 so developers could design health and fitness apps that can communicate with each other. ResearchKit can access even more data such as gait, motor impairment, speech and memory through hardware such as the accelerometer, microphone, gyroscope and GPS sensors in the iPhone.
The benefits, for both Apple and the research community, can be huge, opening a new field for the company and expanding the dimension of research to an unprecedented level. Besides garnering more data, researchers can spend more time on data analysis, as participants can complete tasks or submit surveys straight from the app. Users choose which studies to participate in, and the data they want to provide in each study.
But it doesn’t stop there in terms of application. New apps can be designed, for instance, to track side effects during Phase IV of drug development. It could also be used for follow-ups with patients and in epidemiological studies, to name but a few.
Questions
However, alongside the sense of wonder that such possibilities inspire, a few questions arise in terms of ethics, since it involves sensitive personal data which in healthcare protocol is treated as strictly confidential. Apple has come forward reassuring potential users that patient data will be kept entirely personal. It told Forbes magazine that it will remain vigilant against those who may use the data for profit.Besides ethical concerns, there are also issues of reliability of data entered by people who operate in a non-controlled environment. While it must be possible to counter this possible shortcoming with curatorial mechanisms and the development of analysis methodologies that factor in human inconsistency, extrapolating findings from the sample to the general population will always present challenges. The fact that subjects need to have an iPhone is also a possible socioeconomic limitation that may need to be taken into account.
Applications
Groups in the research community is enthusiastic about the possibilities of app-mediated studies and are already leveraging it to create their own apps. One of them is the Icahn School of Medicine at Mount Sinai, which, in a partnership with LifeMap Solutions, has used the ResearchKit to create the Asthma Health app.
"When it comes to researching how we can better diagnose and prevent disease, numbers are everything. By using Apple’s new ResearchKit framework, we’re able to extend participation beyond our local community and capture significantly more data to help us understand how asthma works," said Eric Schadt, a professor of genomics at the university. "Using iPhone’s advanced sensors, we’re able to better model an asthma patient’s condition to enable us to deliver a more personalized, more precise treatment."
Other apps already developed also cover breast cancer, cardiovascular diseases, diabetes and Parkinson’s disease. The studies so far aim at understanding the illness through related lifestyle issues, symptoms, progressions and other data that can help researchers form a better picture of the health issue being investigated.
"In a traditional clinical study, you’d be thrilled to find 500 research 'subjects.' But imagine what is possible when you can quickly and reliably activate 20,000 research 'partners.' More importantly, participants need to be equal partners and be able to track changes in their own symptoms. It is through sharing insights and data among patients and researchers that we all find 'windows of intervention,'" said Stephen Friend, president of Sage Bionetworks.
The Seattle-based nonprofit organization that works to promote open science and patient engagement in research has developed the Parkinson mPower app, in conjunction with the University of Rochester (USA) and Aston University in the UK. Its goal is to gain an insight into the variability of Parkinson’s. The study combines tasks and surveys that tap the power of the phone's hardware to collect data on abilities that Parkinson's affects such as dexterity, balance and others.
New uses of technology always raise practical and ethical questions alongside the excitement of new possibilities, and the ResearchKit is no exception. But considering both Apple’s standing as a technology company as well as its intellectual reserves, the kit could well break new ground in medical studies through the powerful interfaces of mobile computing combined with human resources and the fascination that science holds on the public.