Lesson Seven: iPhone users are willing to share their medical data
In a study about personal health data (PHD), the Robert Wood Johnson Foundation (RWJF) found that 75% of survey participants said they either "probably would" or "definitely would" share their information with medical researchers, Bot said during a presentation at a recent mHealth conference in New York City.
Meanwhile, after receiving enthusiastic response from asthma sufferers, LifeMap plans to test out a theory that Asthma Health users are motivated by the goal of participating in a project that will help the entire asthma community.
“We’ve gathered more anecdotal data on that, to help hone our hypotheses, and we have some additional ResearchKit apps planned, which we can use to test how other groups’ motivations compare to Asthma Health’s users,” Bridges told ITworld.
Lesson Eight: On the other hand, most users want to share their data anonymously
Also according to the RWJF’s research, though, more than 90% of users are interested in keeping their health data anonymous, said Bot.
Sage Bionetworks is complying with these kinds of wishes. Data from mPower and the other four original ResearchKit apps are using the same backend systems from Sage.
“The apps communicate directly with our Bridge Server APIs (application programming interfaces), which separate account information from the coded research data. This study-specific coded research data is consolidated for each task and exported to Synapse, providing researchers daily updates and a queryable interface into the over 2.5 million records collected across the five apps,” he told ITworld.
Through this process, the names of participants and other personal information are removed from the data that researchers can see.
Users who sign consent forms agreeing to participate in any of the first five ResearchKit projects can choose to share their anonymous data either "with Sage Bionetworks and its partners" or "with Sage Bionetworks and its partners and qualified researchers worldwide." Most mPower users decide to share their data more broadly, he said.
“We (Sage) certainly plan on making data from the mPower app and subsequent analytical results and insights available both through traditional methods (publication) as well as data releases for the subset of participants who consented to share their data broadly with the scientific community," according to Bot.
"For all five of the apps, only partners explicitly listed on IRB submissions as research 'partners' can access the full set of data. For the subset of participants who have agreed to share broadly, any qualified researcher who has agreed to a set of use conditions will be able to access this subset data."
Bot also maintained, however, that members of Apple’s executive team have assured Sage that Apple will not access any of this data.
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