More than 40,000 people downloaded a smartphone app and joined an ongoing global research study to measure how activity affects heart health.
"Just to be clear, 2 months ago this didn't exist; there was nobody in this study," said Euan Ashley, MD, from Stanford University in California, who is one of the creators of the app. "Over the course of 2 weeks in March, 30,000 people signed up," he reported.
The response demonstrates that big data can be harnessed at minimal cost, which could help revolutionize the way research is done, Dr Ashley explained.
"We're really in a new era, and one we don't really understand," he said at the Big Data in Biomedicine Conference in Stanford.
Stanford researchers, in collaboration with the American Heart Association, designed the free smartphone app called MyHeart Counts. Anyone 18 or older with an iPhone 5s, 6, or 6 Plus can download the app, give consent to be included in the study, answer survey questions about risk factors, and then let sensors record their movements for 7 days. The app will ask users to update their data every 3 months.
New Era
Critics have questioned whether consent is compromised because, instead of a face-to-face interaction during which a long paper consent form is signed, smartphone users can just click through to find the "agree" button.
But the attention paid in the traditional method of granting consent is exaggerated, according to Dr Ashley.
"That's the ideal. That's what we try to do, but honestly, the patient says give me the form, they flip through the 17 pages and they sign it because they trust the people who look after them," he told Medscape Medical News. Mobile consent might actually require more attention because each screen gives the user links to more information, he explained.
Another criticism has been that because only English-speaking adults with the latest-model phones can participate, the results might be skewed.
Dr Ashley acknowledged that limitation, but noted that the 700 million people who own iPhones cover broad population sectors. He reported that his team is working on expanding to android platforms to involve more consumers.
The ethics of this type of data collection was addressed by Mildred Cho, PhD, from the Stanford Center for Biomedical Ethics.
Using this technology to enable masses of people to engage in scientific analysis might be the only way to get the large numbers needed for the level of precision desired, she said.
But it comes with questions, she pointed out. "It's more democratizing, but is it more just? Is it just people with iPhones and computers who can do this? Is it exploitation of people who are giving their labor?"
This is a way to measure fitness that couldn't be done before, said Dr Ashley. For example, "in just 2 weeks, we managed to recruit 6000 people to do the 6-minute walk, which is almost 10-fold the largest study that there was before," he said.
Consumers benefit from the app because they can track their own performance and see how they stack up with users around the world. The app also offers information on how they can improve their health.
This could have broad implications for future research, saving time and money.
This method of shifting data collection to consumers on a massive scale could be "the biggest change since the origins of clinical trials," Eric Topol, MD, editor in chief of Medscape, wrote in a recent article on the site.
"When my colleagues and I performed a large heart attack trial that enrolled over 41,000 patients in the early 1990s, it took nearly 3 years and cost more than $50 million. Today such a trial would probably take even longer and cost at least four to five times as much," he reported.
Another advantage is the ability to get and give information in real time. Researchers could send out a message to ask about levels of happiness, for instance, and assess users' level of activity at the moment they respond, said Dr Ashley.
"For clinical researchers who have spent years trying to figure out how physically active you were in the last week by asking what you did last Monday, this is a potential revolution in the making," he pointed out.
The MyHeart Counts study has developed and implemented phone-based research tools as part of Apple's ResearchKit program. Dr Ashley is cofounder of Personalis Inc., which performs DNA sequencing and interprets human exomes and genomes. Dr Cho has disclosed no relevant financial relationships.
Big Data in Biomedicine Conference. Presented May 20, 2015.
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Cite this: Record-Breaking 40K Use App to Join Heart Study - Medscape - May 26, 2015.
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