Last week, Apple announced that it had released the first generation of ResearchKit. For those of us working to bring the internet to healthcare, the Web blew up with strong opinions about it. Whether you are for or against the new platform, it has to be acknowledged that it is an important step toward further uncloaking the world of biomedicine and making it accessible to lay consumers in the healthcare marketplace.
Lately, people who might not have a direct stake in the world of biomedicine have become acquainted with a few of its landmarks, particularly the process of clinical trials. Sports fans followed the late ESPN broadcaster Stuart Scott’s seven-year battle against appendiceal cancer, which included his participation in a clinical trial. Last December, television news magazine 60 Minutes aired a segment on Patrick Soon-Shiong’s approach to disrupting cancer and a side story in the current season of the NBC FBI thriller The Black List illustrated one of the most common ways that patients become aware of clinical trials. Often, they know someone who can help them.
The announcement and the toolkit make it possible that millions of Americans can be made aware of clinical research directly. They may even have an impact on improving reporting on trial results. The kit could be just the thing that engages millions of people where they live -- on their phones.
Still, people have concerns, many of which are valid, about ResearchKit. For our part, it is more boom than it is bust, despite those concerns. Following is a list of 5 criticisms that I’ve seen more than a few times over the past week along with the reasons that I’m not terribly concerned.
People won’t understand to what they are consenting.
Consent cannot be solved by technology alone. (We’ve published several posts on that topic). Technology can provide a mechanism to support understanding and bolster access. On the other hand, the organizations and people behind research should continue to do what they do best: educate patients.
Companies will misuse the peoples’ data.
ResearchKit is for scientists to find participants and capture information for their research studies. Companies can build the apps to make this possible, but the data will typically be going to the researchers, unless the consent says otherwise. Apple has already stated they will not have access to any of this data. Commercial researchers could participate as well, but just like other data-gathering platforms like Facebook and Twitter, they will have to provide value to their users in exchange for their data or they will fail.)
It’s not perfect. The features aren’t complete. Kids can lie about their ages. It’s open source but not platform agnostic.
All true, but perfection is the enemy of good. If we only released perfect, well, nothing would get released. But “good” is a great place to start. It allows throngs of innovators to push the “good” squarely into the “better.” We can see how ResearchKit works. We can watch its adoption move from its initial seeding, and we can contribute to it, and even create an Android version (see #4 on the list). In terms of evolving technological innovations, getting it out there is better than not. 5AM’s definition of good software is this: Used, useful and usable.
It’s only for Apple.
This was an Apple release, and they could have made it cross platform. On the other hand, that means that they would have a much tougher time releasing anything and they are in the business of making Apple customers happy ones. There’s plenty of room for Android developers (80% of devices are on the Android platform) to engage their users as well. If access to research studies brings people to Apple’s devices, you can be sure that Android phones will develop similar capabilities.
It’s only for the rich and excludes the majority of the world.
As this 2013 Pew report on smartphone demographics shows, not all iPhone users are rich, white men. While there is evidence to support that many of us primarily use our smartphones to download and play games, tools like ResearchKit are opportunities to make access to participation in better healthcare direct and directed.
Now, if we could make finding our medical data as easy as finding our iPhones, we’d be onto something. We’re working on it.