Patient Work

What we do:

Our team focuses on research and interventions that address the complex and wide-ranging health challenges created by patient work.  Patient work is defined as the work that patients do as part of finding and accessing healthcare services, managing their disease symptoms and the effects in their daily life, and receiving/managing treatment for illness. We also seek to make patient work and its effects on patients, populations, and society visible, and thus addressable. We integrate multiple streams of research with novel techniques and develop translational projects to address this pressing health problem at all levels.

Who we are:

We bring together academic, community partners, and healthcare providers to conduct research and carry out projects that address patient work in specific populations (like patients with chronic disease and members of historically marginalized racial groups accessing health services). Our team builds on the expertise of population health, community-based participatory research, economics, health management, and more to address the complexities of this health challenge.

Why it’s important:

Patient work is a serious health issue. Patient work is essential to the diagnostic, treatment, and recovery process, and to the ongoing management of chronic diseases. Patient outcomes of treatment depend to a great extent on the ability of patients to successfully carry out patient work. Patient work has broader consequences for individuals and society as well-- In the U.S., where health services are highly fragmented, patients are the untrained, unpaid laborers who connect the pieces of the health care landscape together (Gui, Chen, and Pine, 2018).

Despite the incredible importance of patient work, patient work is largely invisible to clinicians, healthcare organizations, employers, and policymakers. Research shows that patients dedicate extensive time and labor-- often the equivalent of a part time or full-time job--to manage a large amount of medical and health information, coordinate between different sites and levels of care, work to be physically and mentally present in the health care process, “keep up” with their health care, and do their treatment as prescribed. Excessive patient work has negative impacts on individuals (decreased quantity and quality of life), populations (worsened health outcomes), and societies (broad economic and social effects). Research on patient work and solutions to address it are emerging across multiple disciplines, but are hindered by the invisibility of patient work and the lack of integrated research and interventions across disciplines, domains, and scales.

Leadership