You probably know at least one of the millions of Americans affected by asthma, diabetes, breast cancer, heart disease or Parkinson’s. Despite the prevalence of these illnesses, it’s not always easy for researchers to gather the data essential to understanding and treating these conditions. Now, that may change. This week, Apple announced a new tool, ResearchKit, which aims to revolutionize medical research by allowing you to sign up for clinical trails through your iPhone.
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That’s right: Medical research just got way more mainstream. ResearchKit is an open access (translation: available to anyone) tool that makes it easy for doctors and researchers to build health apps — even if they aren’t super tech savvy. “This dramatically lowers the barrier of entry for physicians and researchers to design their own apps,” says Dr. Stanley Shaw, a physician at Massachusetts General Hospital and co-director of the Center for Assessment, Technology and Continuous Health (CATCH). Shaw worked with ResearchKit to design GlucoSuccess, a clinical trial app geared towards people with type 2 diabetes.
Here’s why Apple’s latest announcement might be a game changer for the medical research world — and for patients, too.
Making Clinical Trials Bigger and Better
Start reorganizing your iPhone app folders. Thanks to ResearchKit, there are now five free apps available to people wishing to participate in clinical trials via their phone: GlucoSuccess, Asthma Health, mPower, for Parkinson’s patients, Share the Journey, for breast cancer patients, and My Heart Counts, which helps analyze cardiovascular disease risk. After consenting to become a part of the trial, users will receive instructions as to how often they should use the app. Data entry can be as easy as reporting how they felt or what they ate that day, or as involved as doing a series of simple tasks on their iPhone screen, depending on the app.
“In the first 12 to 24 hours, over 4,000 individuals signed up to participate and downloaded the app.”
Since even your grandma might own a smartphone by now, researchers are getting access to a massive pool of study participants. Especially compared to standard clinical trials, which are typically done only in large, urban medical centers. “In the traditional trials, the findings may only be applicable to, for example, the Upper East Side [of New York City]. With this, the results are generalizable to the U.S. or the globe,” says Dr. Yvonne Chan, an emergency medicine physician at the Icahn School of Medicine at Mount Sinai, who led work on their Asthma Health app. “It’s kind of mind-boggling.”
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Furthermore, most clinical trials collect data only periodically, requiring people to recall behaviors or symptoms that occurred over the past months or weeks — and self-reported data can be unreliable. Can you remember how many servings of fruit you ate last month? We didn’t think so.
“It’s really updating public health research from the era of questionnaires to using the smartphone as a way to collect data,” Shaw says. “We will understand how individuals respond differently to activity, dietary components and other things like whether they are taking their medications, and we’ll be able to analyze this over what we hope will be tens of thousand of people.”
Dr. Ray Dorsey, a professor of neurology and co-director of the Center for Human Experimental Therapeutics at the University of Rochester Medical Center, says they’ve already seen impressive levels of interest in their mPower Parkinson’s app. “In the first 12 to 24 hours, over 4,000 individuals signed up to participate and downloaded the app. That’s unprecedented. By comparison, the largest clinical trial [up until now] was 1,700 people.”
Worried about privacy? Apple says they won’t be looking at any of your data. Plus, each app has special precautions in place to protect the identity of the user. (For example, by giving out participant ID numbers, rather than identifying users by their full name.)
ResearchKit: Improving Care for Millions
Wondering what’s in it for you? ResearchKit isn’t just about making life easier for your doctor. It also aims to empower patients to better manage long-term diseases. For people with diabetes, the app could help them pinpoint which habits they should ramp up (or tone down) to keep their glucose levels in check.
“It will break down their best glucose days and compare them to their worst glucose
days,’ Shaw says. “You might say, ‘I see on the app that I walk 700 more steps on days when my glucose is in the best control.’ That may help encourage them to form a habit.”
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Asthma sufferers may learn more about how seasonality, or even pollution affects their symptoms. Chan says she hopes to eventually develop algorithms that will allow the app to advise users on how to avoid triggers. “We are hoping to gain access to a lot of objective data from location specific GPS, on environmental pollution.”
And Parkinson’s patients may be able to finally pinpoint the things that increase or decrease the symptoms of their disease. “The app has four ways of measuring [symptoms]: one is voice, the second is speed of movement by tapping on the app, the third if the ability to use accelerometers and gyroscopes in the smartphone to measure posture by standing still for 30 seconds, and the fourth is to measure gait,” Dorsey says.
In the future, Dorsey hopes the app will allow participants to determine which behaviors — like sleep, physical activity, or taking medications — ease their symptoms. “They can exercise and come home and do the tapping test to see if their speed is better or not,” Dorsey says.
Perhaps most exciting, the information coming from these apps could change the way these diseases are treated in the future. “We think this data and having objective sensitive measures will make the development of new drugs and devices faster and more efficient,” Dorsey says. “We’ll be able to tell if they’re working.”
For more information about Apple’s ResearchKit apps, head to apple.com/researchkit.