Personal Data for the Public Good

This study examines attitudes toward personal health data (PHD) from the individuals who track PHD, the companies involved in self-tracking devices, apps, or services, and the researchers who might use the data.

The Issue

Health-related data is being tracked more and more as the number of wearable devices and smartphone apps increase. As part of the Health Data Exploration (HDE) project, this report examines attitudes towards PHD from the individuals who track PHD, the companies involved in self-tracking devices, apps, or services, and the researchers who might use the data.

Key Findings

• Individuals were very willing to share their self-tracking data for research. However, the dominant condition (57%) for making their PHD available for research was an assurance of privacy for their data. Over 90 percent of respondents said that it was important that the data be anonymous.
• This study showed that the current methods of informed consent are challenged by the ways PHD is being used and reused in research.
• Researchers are enthusiastic about using PHD in research but are most concerned about the validity of PHD and lack of standardization of devices.

Conclusion

Despite sampling bias, the report concludes that, to enhance the potential to generate knowledge out of personal health data, creative solutions allowing individual rights to be respected, while providing access to high-quality and relevant PHD for research, must be developed.

About the Study

Surveys and interviews of three relevant stakeholder groups were conducted: individuals, researchers, and companies and key informants. Surveys were conducted online between August 1, 2013 and September 11, 2013, with 465 self-selected individuals and 134 self-selected researchers participating. A total of 35 interviews were completed (11 individuals, 9 researchers, and 15 companies/key informants).