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Project Underway to Enable Mobile Health Data Collection

Runners in a race

(Kevin Dooley/Flickr)

3 June 2014. A joint project of the University of California campuses in San Diego and Irvine aims to answer technical and policy questions needed to collect health-related data from mobile devices and social networks for public health research. The Health Data Exploration Network project received a $1.9 million grant from the Robert Wood Johnson Foundation and was the subject of a presentation yesterday at the Health Datapalooza conference in Washington, D.C.

The project plans to develop a framework for the highly diverse world of mobile apps, wearable fitness devices, and social media to share data they collect, while meeting concerns of privacy, intellectual property, data quality, and public need. By addressing these issues, the project aims to establish data collected through these technologies as another source of information for health research and policy, along with electronic medical records, clinical trials, and public health surveys.

Many of these devices and systems are made by small technology companies without the means individually to address these issues. The project, part of the California Institute for Telecommunications and Information Technology (Calit2), plans to identify best practices and policies that encourage the sharing of personal health data from these companies, while still meeting legal and ethical concerns, as well as within the limited resources of the companies that develop the technologies. Calit2 is a research institute covering nanotechnology, life sciences, information technology, and telecommunications working from the UC campuses in San Diego and Irvine.

The first report from the Health Data Exploration Network issued in March 2014 outlines the opportunities offered by personal health data, as well as some of the obstacles the project faces, compiled from surveys of mobile and social media health app users, as well as researchers hoping to access the data. The findings indicate individual app users are willing to share their data, and often do so among people with similar health concerns. Examples are online communities, such as Crohnology that discusses Crohn’s disease and colitis, and PatientsLikeMe, a more general patients’ health community.

That willingness to share data, however, is heavily conditioned on maintaining the privacy of an individual’s data. A majority (57%) set privacy as the main condition for data sharing with researchers, with nearly all (90%) insisting on anonymity. The report also noted related concerns among individual users over ownership of the data they shared.

The researchers surveyed had similar concerns, but from their perspective, the issue was one of informed consent. Current practices for individuals to give their consent to take part in research do not usually apply to devices that routinely capture data like smartphone apps. Researchers were also concerned about the quality of data collected from mobile devices and social media, particularly the lack of standardization from one source to another.

A possible way of side-stepping these obstacles is through third-party intermediaries like the company Small Steps Labs that collects data from FitBit, makers of wearable health tracking devices and apps, and researchers. Small Steps Labs collects the data from FitBit and researchers pay for preferred access to the data.

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