Apps will allow study participants to submit health data from their iPhones.
Apple products, as the saying goes, solve problems we didn’t know we had. But medical researchers are already quite aware of their outdated recruitment schemes.
“So the old-old-fashioned way of doing it, and it still happens, is that you make a flier, and you put the little tabs at the bottom. You remember, in college you’d have people, like, ‘Roommate Wanted?’ says Kathryn Schmitz, an exercise physiologist and director of the exercise medicine unit at UPenn.
“So medical researchers do the same, right? They put the little thing at the bottom, you pull it off, you call the coordinator if you are interested.”
Signs on telephone polls don’t work all that well, and neither does bulk mail. For a recent study, Schmitz sent out more than 60,000 letters, and got back 351 responses.
Apple’s Research Kit changes that math. Announced this spring, it’s a free platform researchers and developers can use to create apps that collect huge amounts of data from anyone with an iPhone. (Research Kit is also ‘open source,’ meaning the code can be freely used and modified.)
Schmitz helped create one of the first apps, called Share The Journey, which measures women’s experiences after breast cancer.
“We’ve been very interested for a long time in understanding better the persistent adverse effects of breast cancer treatment, so that we can address the ones that are most bothersome, and cause the most problems,” she says. “But what are the ones that are most bothersome, and cause the most problems?”
You have to ask lots of women lots of questions to really understand which symptoms linger, or show up unexpectedly at a later date.
So to do that, the app collects information from the sensors inside the iPhone, including the number of steps taken in a day. There’s also reaction time tests using the touchscreen, and a daily list of questions sent to participants.
“Pretty much my exercise level hasn’t changed, as you see,” smirks Rachel Reither, a 55-year old from Williamstown, New Jersey.
She’s also sent prompts about sleep quality and mood.
Reither was diagnosed with Stage 3 breast cancer in 2012, undergoing eight rounds of chemo, and then later that year, a double mastectomy.
Today, she’s cancer free, and happy to spend a few minutes each day tapping out responses.
“If they can learn from my experiences, and what happened to me, it can only better somebody else,” says Reither. “My father, when he died, he donated his body to science, so people learn from him, from what he had. So, I’m doing it before I’m gone.”
Along with Share the Journey, Research Kit’s initial rollout included apps focused on patients with asthma, diabetes, Parkinson’s and cardiovascular disease.
In less than two months, 60,000 participants have signed up.
So the size is there, but what about usefulness? Can a study that only includes iPhone owners really be considered representative of the entire population?
“We won’t be able to see that until the data comes in, just how diverse the pool is economically, racially, gender-wise…age, of course, is going to be another huge factor,” says Alison Kenner, a social scientist at Drexel studying digital health technologies.
“There’s no perfect study, right? There will be limitations, things you can’t control for, and you just have to work that into the way you write things up.”
She does gives high marks to the consent process each participant has to click through before they can start sharing their information, a kind of safety check to explain the study and how health data will be used.
That information, at least for Share The Journey, could turn into published research within a year, according to Schmitz, giving doctors more information to better serve patients. And not just those with a smartphone.