Patients Donate Data to Fuel Health Research

As chronic disease patients flock to online communities for support, the practice of “data-swapping” among those who share a diagnosis is becoming more common. At the same time, researchers are asking how they can leverage that data to improve chronic disease surveillance.

For a recent study, published April 27 in the journal PLoS ONE, researchers Elissa Weitzman, ScD, MSc, and Kenneth Mandl, MD, MPH, of the Children’s Hospital Informatics Program (CHIP), held a “data donation drive.” They asked members of the diabetes social network TuDiabetes.org to share information about their hemoglobin A1C status.

Using CHIP’s health record as a model, the researchers created TuAnalyze, an online application which allowed members to submit their data publicly or anonymously. The data were then aggregated and displayed in state and country maps, giving the project a strong social component and “a sense of community activism,” Dr. Mandl said.

The CHIP team found that under the right circumstances—particularly when confidentiality is assured—patients are willing to share their data. Among all TuDiabetes members who used the TuAnalyze tool, 81.4% chose to share their A1C data anonymously, whereas just 34.1% chose to display it on their personal profile.

Dr. Weitzman explained that although many patients want anonymity, they also expect “a continued research relationship” and “to learn more about their own disease.” She added that online social networks are an ideal way to facilitate that exchange, and future studies must find a way to incorporate them. “Science is changing,” Dr. Weitzman said.