Leading healthcare institutions are championing patient empowerment, where patients take a on a more active partnership role with their healthcare team. Health information seeking is an essential component of patient empowerment. But as these institutions increasingly call for patient empowerment, the labor patients that must undergo as part of this process is not taken into account. In order to best support all patients, we must understand and characterize the information work they carry out as they become empowered. Using data gathered from a variety of sources, including home visits, observations, interviews, and comments posted to a popular online community for chronic illness, Kaitlin Costello developed a comprehensive framework of information labor in this study. Patients undergo three distinct types of information labor while interacting with health information: cognitive, emotional, and physical. As one participant says, “It’s a lot of work. It’s a part time job.” This framework has implications for policymakers, healthcare providers, and patients themselves, demonstrating that support for information work is necessary in order to ensure equitable access to health and healthcare.

Related publications:

Costello, K. L. (2018). The burden of empowerment: Information work in online health communities. European Society for Health and Medical Sociology 17thBiennial Congress. June 6-8, 2018. Lisbon, Portugal.

Hawkins, B., Costello, K. L., Veinot, T. C., Gibson, A., & Greyson, D. (2017). Health information behavior research with marginalized populations (panel). In Proceedings of the 80th Annual ASIS&T Meeting. Oct 28- Nov 1, 2017. Washington, DC.
http://doi.org/10.1002/pra2.2017.1450...

Costello, K. L. (2016). Impact of patient-provider communication on online health information behaviors in chronic illness. In Proceedings of the 79th ASIS&T Annual Meeting. Oct 14-18, 2016. Copenhagen, DK.
http://doi.org/10.1002/pra2.2016.1450...