Technological innovation in the health landscape is occurring rapidly, and much of it would not be possible without patient data. Health data sets can be leveraged to build new tools that can help diagnose disease, remotely monitor and track patients, and make groundbreaking discoveries that lead to new treatments and cures. Technology companies, which have already disrupted countless industries, have the most advanced capabilities to organize data, create consumer products based on data-driven insights, and make information universally accessible in ways that are certainly applicable to the health space.

However, because they have not traditionally played a central role in the healthcare landscape, their participation carries substantial implications for how patient data are collected and used. This environment of uncertainty impacts patients’ levels of trust and, as a result, their levels of engagement in biomedical research.

This report summarizes our interview series on data-driven patient participation in research, and our private roundtable focused on building trust to achieve a shared vision for patient data. It describes key themes that have emerged from these efforts and briefly mentions upcoming work that will build on this foundation.