Privacy

Penn State Prof's New App Would Give Study Participants Control Over Their Data

• By Michael Hart
• 06/10/15

A professor at Pennsylvania State University is working on a plan to protect study participants' data and make it available for researchers at the same time.

Human Development and Family Studies Assistant Professor Timothy Brick's system, called Maintained Individual Data, Distributed Likelihood Evaluation (MIDDLE), would limit data given to researchers, but allow them to use it to make statistical models.

In a traditional research study, participants volunteer their time, complete whatever activities they are required to and then pass on the information about themselves to researchers — who do whatever they want with it.

Using the example of study participants recording their emotions each day in relation to how much exercise they get, typically, by using something like a Fitbit, they would record their physical activity for a day and then record their emotional moods, using some kind of scale.

With MIDDLE, the information would go to a private data store that only the participant would have access to. Then, for example, at the end of the week, researchers would send out different "models" and ask the participants to use an app to choose themselves which one best fits their data.

The information the participant supplies via the app tells the researcher how accurate the model is based on the participant's responses, allowing him or her to further refine its estimates and update the models.

Researchers would never see how much participants exercised, or what their moods were, but they would have the information they need to make judgments about it.

Noting that one of the first concerns with the new MIDDLE system might be that participants may not accurately report results, Brick said that has always been an issue.

"Yes, for this to work, you have to trust people," Brick said, "but we do that anyway."

The app is still in development but, along with reporting research study results, it will also allow potential participants to use their smartphones to pick and choose what studies they might be interested in participating in. It would also allow them to end their participation by simply clicking a button. At the same time, it would allow researchers to easily stop the study early if they have enough information.