Project Description & Methodology

Why do we need the Project on Transparency & Technology for Better Heath?

Empowering patients to play an active role in their health can improve health outcomes and reduce costs. Data sharing initiatives that encourage patients to collect and share their own health data and use information to improve their health care decisions are a promising innovation. Examples of this new approach include PatientsLikeMe, an initiative connecting patients to exchange information about their disease, the Collaborative Chronic Care Network, a novel approach helping patients with chronic illnesses, OpenNotes, an international movement to make clinical notes available to patients, and dozens of Patient-Powered Research Networks (PPRNs), efforts that mobilize patients to become active partners in research. Advances in information technology, from online platforms to smart phones, sensors and wearable devices, were instrumental to this wave of data sharing for better health. 

In theory data sharing should empower patients to take better care of their health. Yet our research has demonstrated that an array of obstacles, like scarcity of options and designs that are not user-centered, can limit the impact of information. Cognitive biases affect the way we process and act on information. Research on wearable devices finds that less healthy and poorer individuals are the least likely users. Digital tools that are used mostly by technologically savvy patients may fail to engage less educated and low-income populations, who are at higher risk of certain chronic conditions. It is a paradox that just when more health information becomes available, few patients use it to guide their health care decisions.

These limitations have negative repercussions. First, data and information sharing that does not result in behavior change fails to protect the health of the American public and may impose higher costs on health care systems. Second, data that empowers only a minority of patients may perpetuate inequalities in health. Patient engagement through information technology lacks a coherent behavioral theory of change and is often not designed around the needs of patients. Without a clear understanding of how data mobilizes patients, future platforms may fail to engage patients in their health. Characterizing the link between data and information sharing and patient action remains a critical, yet underdeveloped, research area, both theoretically and empirically.

How will the Project on Technology and Transparency for Better Health help? 

With this project, we will investigate several patient engagement efforts to build an inventory and a comparative typology of engagement models and advance several hypotheses of how data and information sharing change patients’ behaviors. This project is timely given that the use of data and information sharing in health care is expanding, as shown by the proliferation of patient platforms. Our contribution will deepen the understanding of data and information sharing as an instrument for behavioral change and engagement, and stimulate experimentation and improvement in platforms. Our findings will be highly relevant to those who intend to mobilize patients though information, from patient advocacy groups, to physicians and researchers, health care and technology firms as well as policymakers.



We will develop case studies to construct an inventory of patient engagement efforts and a typology of those efforts to understand their design features, populations they serve and modes of engagement they employ. The inventory will describe those efforts qualitatively. The comparative typology will capture commonalities and differences in engagement architectures. Our case studies will build on interviews with patients, platform leaders, clinicians and researchers to capture the breadth of experiences with patient platforms.