Reinventing Discovery

How app-based research is navigating the shifting landscape of online privacy and security.

Data appears on a smart phone screen.

As the popularity of smartphones has soared, so has enthusiasm for app-based research studies, although plunging public trust in commercial technology companies has jolted the field.

The Issue

 

Scientists see mobile phone apps and other digital tools as a means to capture biomedical, behavioral, and other data from many more people than traditional research studies can, thereby accelerating medical discovery. 

 

Yet, with security breaches of digitally stored data now frequently in the news, along with accounts of commercial exploitation of customers’ personal information, scientists can no longer assume public acceptance of app-based research. 

Key Findings

  • Scientists conducting app-based research are confronting dropout rates among study participants as high as nine out of 10. Funding is needed for research on smartphone users, generally, and research dropouts, specifically, to power the field with data rather than assumptions.

  • Improved security and standards for ethical data use are urgent needs if the field of app-based research is to grow. Also critical are protocols for handling contributed data along with training for research personnel.

  • Early proponents of app-based research have begun to question the degree to which interactive tech can replace human dialog and the relationships that help to sustain traditional research studies. A purely technology-based solution is unlikely to suffice.

Against a backdrop of growing public concern about digital information security, dropout rates among participants are challenging the premise that smart phones alone can efficiently and economically yield the number and variety of research participants needed to achieve scientific goals.

In response, some scientists are pulling back from the idea of apps as stand-alone research platforms and repositioning them as simply one tool of engagement among many, thereby giving research participants leeway and choice. Others are paying careful attention to user preferences and tolerances as a way to increase the quality and usefulness of the information research participants provide and secure their long-term commitment.

About the Report

The Robert Wood Johnson Foundation commissioned this report by Wielawski to understand challenges and promising paths forward for engaging people in research studies using mobile apps and other digital devices. The views expressed here do not necessarily reflect the views of the Foundation.

From the Blog

Researchers: How to Leverage Personal Data and Still Protect Privacy

The popularity of app-based research studies has soared, although plunging public trust in commercial technology companies could dampen enthusiasm and upend science if researchers don’t act quickly.

Read the blog post