Leveraging Data-Driven Patient Participation to Accelerate Medical Research

The fuel for biomedical innovation is data. Data-driven patient participation — or patient contribution of their biospecimens, self-reported or wearable data, health record data, and other information — has emerged as a tool that may help advance medical research, improve care for patients, and increase patients’ engagement with their own health.
However, the key players in biomedical research are shifting, and this new landscape comes with the need to build public trust and make updates to a regulatory environment that is not prepared to keep pace with innovation. Additionally, calls for patient contributions of health data are louder than ever in the midst of COVID-19; thus, the potential consequences of data misuse are significant.
This report examines the areas where data contribution may meaningfully accelerate research, especially in the context of COVID-19, as well as the challenges that could be posed by technology, new policies and regulation, and patient privacy issues.

Updated/Published September 15, 2020