Project on Transparency and Technology for Better Health
Empowering Patients Through Transparency and Technology
Sharing data and information can be a powerful tool to engage patients and improve health outcomes. New platforms, fueled by advances in digital technologies, promise to empower patients by allowing them not only to access information, but also to produce and share their own health data and connect with other patients, physicians and doctors like never before. Yet evidence shows that often data sharing fails to mobilize patients, that translating information into concrete actions for better health can be problematic, and that vulnerable populations, like less educated, low-income or minority groups may be left behind by information tools. The connections between data and information sharing and patient action remain poorly understood and underdeveloped in the literature.
The Project on Transparency and Technology for Better Health was established to conduct comparative case studies on platforms that empower patients through information to provide an inventory and typology of initiatives. We want to understand which characteristics are more likely to support patient empowerment, at a general level and for vulnerable populations. Evidence from the case studies will allow us to develop several hypotheses linking data sharing to patient empowerment and better health. These findings fill a critical gap in the literature and can improve the design of future data sharing platforms. This project is part of the Transparency Policy Project.