The Center for Assessment Technology & Continuous Health (CATCH) at Massachusetts General Hospital is researching wellness and disease using existing and new sources of data, while also focusing on protecting the health data that patients are generating in today’s online world.

Ownership of Patient Data: Testing Approaches to Utilize and Safeguard Data

The increasing adoption of electronic medical records (EMRs) and the growth of non-traditional individual data collection tools (e.g., wearable sensors, smartphone health apps, GPS location data, social media posts) pose a fundamental challenge of how to utilize these patient health data to give maximum benefit to individuals, while preserving patient data ownership and privacy. The mission of CATCH at Mass General is to use these tools to engage individuals in their own health care. As a result, CATCH is partnering with the Human Dynamics Group of the MIT Media Lab, the World Economic Forum and ID3 (Institute for Data Driven Design, a Boston-based research and educational consortium) to investigate and test solutions that allow individuals to control their health data and safeguard its privacy.

In all CATCH studies, patients utilize and control access to all the data they generate for their own health. For instance, CATCH is utilizing the OpenPDS concept of Personal Data Stores (PDS) in smartphone-based clinical studies. OpenPDS is a system that allows individuals to store and secure their data, while also granting access to data in an adaptable manner (for example, allowing a doctor to view certain data). Under OpenPDS, individuals grant access only for specific uses of their data. With our patients’ specific permission their data may be used for multiple purposes including medical and public health research to help us better define wellness, disease and treatments. The research may also help us define ways to help patients organize their lives to improve management of their health.

Learn more about Open Personal Data Stores