This is archived content, for historical reference only.

Every day, in the course of using cell phones, credit cards, search engines, websites, and medical devices, we leave digital footprints. Aggregated and analyzed, these data flows, which occur with and without our knowledge, have the potential to paint a detailed health profile of us, as well as to describe whole communities based on location, health conditions, or other factors.

The proliferation of extremely large databases of health information challenge regulators’ and society’s ability to ensure people’s data rights and privacy. This report provides an overview of some of the emerging issues related to consumer-generated health data. It is based on numerous interviews with technology and health care experts, several of whom offer strategies for protecting privacy in the future.

Among the issues discussed:

• Most people are unaware that they are leaving their personal data behind and that some of this information is not protected by HIPAA. Data brokers are able to build dossiers on people to sell to marketers, while consumers lack recourse to obtain or correct their information.
• Clinical researchers, health plans, and others use the information to enhance individuals’ health as well as to benefit public health. Larger and speedier clinical trials are made possible by the quantity of data available.
• Different types of information — such as historical claims data and consumer-generated data — can be combined and used for statistical modeling for health or financial risk profiling. Such information is purchased by hedge funds, hospitals, large provider networks, payers, pharmaceutical companies, and others.
• Even when given an opportunity, most consumers are not vigilant about protecting their data; many are willing to share data to further their own health or to serve public health goals.

The complete report is available as a Document Download.