Consumers who track their own health data are willing to contribute that information to larger research projects--and researchers eager to use it--if some basic concerns can be worked out, according to the Health Data Exploration (HDE) project, funded by the Robert Wood Johnson Foundation.
As wearable devices and smartphone apps become more popular for tracking personal health, an array of health data is being generated, but not used in traditional health care, public health or health research, the project report notes.
"Self-tracking data can provide better measures of everyday behavior and lifestyle and can fill in gaps in more traditional clinical data collection, giving us a more complete picture of health," it states.
The project used surveys and interviews with consumers, researchers and the companies that market self-tracking devices, apps or services.
While vendors consider advancing research a worthy goal, they don't see it as their primary business concern. While some are open to data sharing with academics, they find these working relationships challenging.
However, 46 percent of the researchers polled have already used self-tracking data in their research, and 23 percent have collaborated with application, device, or social media companies.
The barriers to data-sharing, according to the report, include:
- Privacy and data ownership: Consumers (57 percent) want an assurance of privacy for their data. More than 90 percent want it to be anonymous. A majority wants to own or at least share ownership of the data with the company that collected it.
- Informed Consent: Current methods of informed consent are challenged by the ways data are being used and reused in research. A variety of new approaches to informed consent are being evaluated.
- Data sharing and access: Consumers' willingness to share data depends on what is shared, how the data will be used, who will have access to it and the level of personal and public benefit.
- Data quality: Researchers are concerned about the data's validity and the lack of standardization of devices.
"Creative solutions must be found that allow individual rights to be respected while providing access to high-quality and relevant data for research. ... There is a great deal of experimentation taking place working toward these goals," the report states. "We are optimistic that the public good can be served by these advances, but we also believe that there is work to be done to ensure that policy, legal, and technological developments enhance the potential to generate knowledge out of personal health data ..."
Self-tracking and wearables were among the big trends at the International Consumer Electronics Show's Digital Health Summit in January. The top 10 most-used mobile health apps are related to fitness and running, weight loss and nutrition, and women's health, according to the latest Citrix Mobile Analytics Report.
To learn more:
- find the report (.pdf)