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App Chat: Should you enroll in a medical study on your iPhone?




Apple's promotional video for ResearchKit.

http://apple.co/researchkit
Apple's promotional video for ResearchKit. http://apple.co/researchkit
Apple (via YouTube)

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This week on App Chat we're taking a look at Apple's new software platform ResearchKit, which they announced alongside other products including the Apple Watch and a new Macbook.

What is Research Kit?

Imagine if researchers conducting medical studies could survey all 700 million plus iPhone users around the world. The sample size would be huge! And that's what ResearchKit is about.

It's a platform built by Apple that's supposed to make it easier for researchers to create apps that they can use to get more people involved in their studies. The idea's that by creating apps that let people answer questionnaire or track their medical conditions on their iPhones, researchers will be able to gather more accurate information from groups of people that might not be located in their area.

Say researchers want to survey fifty thousand Asthma patients and ask them a bunch of questions over a long period of time about their condition. Rather than have subjects come into a lab to be tested and surveyed, they can use an app on their phone to constantly update the researchers on what's going on with them. There's the potential that this platform could make it easier for patients to participate and more closely track different variables throughout the day than if they're tasked with recalling information while sitting in a lab setting.

If you're interested in checking out the studies that are available to enroll in, Apple's got a list of them on their website. They're related to asthma, diabetes, breast cancer, heart disease and Parkinson's disease. 

If you do click through and download the apps, you'll be able to see if you qualify to participate in the studies that they're associated with. Some of the general guidelines include that you have to be over 18 and that you have to have the different conditions associated with each study.

Let's say that you are a breast cancer survivor and you decide to participate in the study that does followup on how breast cancer treatments impact patients lives. Before you enroll, you should consider the fact that you're inputting personal health related information on your cell phone, so the issue of security should be in your mind.

Apple says that they never view the information. That for studies, names and identifying info are replaced with codes so that people are kept anonymous. That and you'll always have to consent to how your information is used. But you still have to put your faith in a company and a team of researchers to keep your information safe.

Other red flags that come to mind include the issues of population bias, given that a very specific group of people is likely to own iPhones, improperly recorded data and the possibility that unqualified people will join the studies without scientists knowing. Fraud isn't out of the question if all you have to do to join a study is to hit confirm and answer a questionnaire on the app.

SCPR's Rebecca Plevin interviewed some experts about these concerns and she has a great post over at her blog, Impatient

So, should you enroll in a medical study on your iPhone? If you're aware of the risks and you want to help out with some studies, it could be worth it. And in the future the ResearchKit apps that come out might be able to read information from your iPhone's Health app, which means that researchers could be able to see how often you're working out, what you ate or what your heart rate looks like throughout the day. You'll have to give consent for all of that though.

Since this is App Chat, I had to recommend a couple of fitness focused apps. This week they were My Fitness Pal and Strava. The first is great for counting calories while the second is all about virtually competing with fellow runners and cyclists on digital courses around the city.

And if you want to race me, here's a link to my Strava profile.

If you have any recommendations for apps and technology, or if you just want to touch base, you can always shoot me an e-mail at JMargolis@scpr.org.