As many of you know, the future of medical research took a giant leap this week. We now live in a world where we can sign up for medical research studies from an iPhone. The San Francisco Chronicle reported that an impressive 11,000 iPhone users signed up for a Stanford Medical heart health study in the first 24 hours after the app, MyHeart Counts, was made available in the App Store. That level of response typically takes a year and the involvement of dozens of medical centers, with a marathon of red tape. Now it can be done among the hundreds of millions of iPhone users at their convenience, from their homes.
I was one of the 11,000 who signed up on the first day, and if it’s this easy for an Average Joe like me to participate every time I’m quite confident that I’ll be a regularly contributing member of the research community. I had a few minutes Tuesday evening and downloaded the app without my kids even knowing (judge me if you must for my multitasking parenting moment). After a quick email verification, I was up and running. A series of screens (Figures 1 & 2) walked me through the purpose, methods, activities, requirements and issues to consider. Everything was worded simply. The user interface was minimalistic – black and red text on a white background with plenty of space on each screen, and “Next” or “Previous” buttons clearly marked. The informed consent was also clearly marked and worded in layman’s terms. I walked through a final selection screen where I could choose whether or not to allow the Health app to access my data such as height, weight and heart rate.
Figure 1. The MyHeart Counts app uses simple screens to clearly set expectations
Not having participated in a study previously, I have been pleasantly surprised at the relative ease thus far. The study involves performing tasks, monitoring my activity level and responding to surveys for seven days. I am asked to keep my phone on my person continually as much as possible during the seven days, but a short daily survey provides an opportunity to fill in any gaps. It asks, “Did you perform any physical activities yesterday that you think were not recorded by your phone or wearable device?” and then allows me to select the activity and number of minutes. It says it can access data from a wearable device, but I choose to keep it simple and just use my phone for monitoring. Later I will do a prescribed six-minute walk, for which instructions are clear and easily accessible. I think I can handle this! And to think, I found this study without the clinical coordinator having to post one of those papers in the hallway with the tear-off tabs with their phone number.
Figure 2. MyHeart Counts also describes data sharing and daily activities
My experience so far has made it easy to participate and excited to be involved. Opponents of progress in medical technology may raise questions – as they typically do – about privacy. I believe the informed consent is well written and addresses these concerns. One of my favorite aspects of this study is that institutions as reputable as Stanford Medical and Apple are backing it and creating solutions to the data security challenge that has stalled development in health care for years.
ResearchKit brings plenty of potential besides addressing privacy concerns. The current activities available in ResearchKit (Figure 3) fall into one of four categories: motor activities, fitness, cognition and voice (now if we could get it to read a blood test, it would blow the doors off the hinges). But perhaps most important of all, it is open source. Ricky Bloomfield explained why this is so significant:
Why is that important? Because it means that this technology will eventually be available on any platform. Yup, including Android. And Windows. And whatever else comes in the future.
And it also means that integration between ResearchKit and other emerging healthcare technologies will be possible, including the SMART on FHIR platform, which is leading the way to modernize healthcare interoperability.
I, for one, applaud the effort, and I advocate each step that brings the convergence of people, medicine and technology. It’s time to move forward. It’s time for more advocates to emerge who are willing to download an app, participate in a trial, or take whatever small step is needed next to move health care forward.
Figure 3. Active tasks that will be available in ResearchKit