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New Apple app lets you contribute 'real data' to studies

By collecting data from women of all ages across the country and world, the Share the Journey app could provide "real data" that's "not significantly affected by who participates in a trial," says Dr. Marisa Weiss. Asian Media/Flickr Creative Commons

The Apple Watch got the lion's share of attention when the company unveiled several new products  Monday. But a lot of people in the health care industry are going to be interested in ResearchKit, which the Apple describes as a "powerful tool for medical research."

Through ResearchKit, you can opt to use several iPhone apps to share health data - like weight, blood pressure, glucose levels and asthma inhaler use – with doctors and scientists. A huge benefit is that it allows researchers to recruit participants for large-scale studies.

So far, researchers at UCLA have developed an app with ResearchKit for breast cancer, called Share the Journey: Mind, Body and Wellness after Breast Cancer. (Read more about that below.) Check out this BuzzFeed article to learn about the four other ResearchKit apps, which are focused on asthma, cardiovascular disease, diabetes and Parkinson's disease.

"I think it has some real value for taking research to a new level," says Dr. Eric Topol, director of the Scripps Translational Science Institute in La Jolla and author of "The Patient Will See You Now," which analyzes how technology is changing medicine.

Breast cancer research

The Share the Journey app will track five common consequences of breast cancer treatment: Fatigue, cognitive difficulties, sleep problems, mood changes and a reduction in exercise performance, according to UCLA.

The app will collect information through daily, weekly and monthly questionnaires, activity trackers and journal entries. Both healthy women and breast cancer survivors can participate in the study.

The goal is to understand why some breast cancer survivors recover faster than others, why their symptoms vary over time, and what can be done to improve their symptoms, UCLA says.

UCLA researcher Dr. Patricia Ganz is excited about the opportunity to collect data from a large pool of women of all ages.

"If you have enough people, patterns will emerge that might be informative," she says.

Potential impact

Several breast cancer organizations – including BreastCancer.org, an online community comprised of some 11 million users in 230 countries - are helping to get the word out about the Share the Journey app.

Dr. Marisa Weiss, an oncologist and president and founder of BreastCancer.org, thinks the app can make a big difference.

"It's providing real data" that's "not significantly affected by who participates in a trial," she says. The Share the Journey app, she says, could provide "the inside scoop on what it's like to live past breast cancer in your everyday life."

Along with offering big data, she says the app could also empower individual women, by providing them with helpful information about their conditions.

"It gives her a real record of what she's going through, so that when she goes to the doctor, she has better documentation as she reports her symptoms," Weiss says.

'Real world' data

There are some limitations to these apps – and unknowns.

Dr. Topol points out that data collected through the apps may not be perfect, since the studies won't be as controlled as they would be if they were conducted in a medical center or university.

Still, he says any inaccurate self-reporting should be balanced out by the large sampling of people involved.

And, he says, there's another advantage: The studies will be conducted "in the real world, rather than the artificial medical world."

What Topol can't predict, he says, is how effective will the apps be in changing health outcomes, or finding better treatments.

"That's what the research is for," he says.