Research

Dissertation: The Invisible Labor in Managing Chronic Illness: Exploring Patient Work through Qualitative Methods and Patient Narratives (Link) (Defense Presentation)

Abstract:

My dissertation investigates Patient Work (PW) in the context of chronic illness, focusing on information work and the establishment of legitimacy and credibility regarding bodily information. Employing an interdisciplinary approach, my research draws from health services research, science and technology studies, informatics, and human-computer interaction. Using empirical data from patients managing Chronic Kidney Disease and seeking an Endometriosis diagnosis, my dissertation explores dimensions of information work and patients' quest for credibility, legitimacy, and authoritative knowledge.

Defining PW as the labor and tasks associated with healthcare services, illness management, and treatment, this work builds upon the foundations laid by medical sociologists Anselm Strauss and Juliet Corbin. My dissertation delves into information work dimensions, including tracking, disclosing, and synthesizing health information, with an emphasis on often-overlooked physical experiences. It highlights the overlooked form of information work involving bodily experiences and explores how patients navigate disease management using data from their bodies, building legitimacy and credibility through their experiences.

My dissertation also examines the challenges faced by patients, particularly women, in establishing credibility within professional communities during their diagnostic quest. Chronic illness serves as a justified case study due to patients' instrumental role in managing treatment and care, which is often overlooked by empowerment efforts. The research contends that without recognizing PW, poorly designed systems burden patients, leading to worse health outcomes. This interdisciplinary dissertation bridges research gaps, aiming to shift healthcare systems to better support unaccounted-for patient labor and empower patients as credible experts in their care.

Below is a list of some of my writing with links to papers or sites where you should be able to download writings. Please feel free to email me directly for writings if you are unable to access them another way. You can also look at my Google Scholar page as that is more likely up to date.

Publications

Journal Articles

  • Gordon, E., Harlow, J., Whitman, S. A., & Lee, M. (2024). Data Discretion: Screen-Level Bureaucrats and Municipal Decision-Making. Digital Government: Research and Practice. https://doi.org/10.1145/3652950

  • Pawar, A. S., Thorsteinsdottir, B., Whitman, S. A., Pine, K., Lee, A., Espinoza Suarez, N. R., Organick-Lee, P., Thota, A., Lorenz, E., Beck, A., Albright, R., Feely, M., Williams, A., Behnken, E., & Boehmer, K. (2023). Decisional Regret Surrounding Dialysis Initiation: A Comparative Analysis. Kidney Medicine, 100785. https://doi.org/10.1016/j.xkme.2023.100785

  • Shukla, P., Lee, M., Whitman, S. A., & Pine, K. (2022). Delay of routine health care during the COVID-19 pandemic: A qualitative study of individuals’ risk assessment and decision making. Social Science & Medicine, 115164. doi:10.1016/j.socscimed.2022.115164

  • Barreto, E. F., McCoy, R. G., Larson, J. J., Warsame, R. M., Kennedy, C. C., Baker, A. E., Hart, E. S., Pagel, S. M., Whitman, S. A., & Enders, F. T. (2021). Evaluation of the academic achievements of clinician health services research scientists involved in “pre-K” career development award programs. Journal of clinical and translational science, 5(1). doi:10.1017/cts.2021.780

  • Boehmer, K. R., Pine, K. H., Whitman, S. A., Organick, P., Thota, A., Espinoza Suarez, N. R., LaVecchia, C. M., Lee, A., Behnken, E., Thorsteinsdottir, B., Pawar, A. S., Beck, A., Lorenz, E. C., & Albright, R. C. (2021). Do patients with high versus low treatment and illness burden have different needs? A mixed-methods study of patients living on dialysis. Plos one, 16(12), e0260914. doi:10.1371/journal.pone.0260914fgsfds

Peer-Reviewed Conference Proceedings

  • Whitman, S. A., Pine, K. H., Thorsteinsdottir, B., Organick-Lee, P., Thota, A., Espinoza Suarez, N. R., Johnston, E. W., Boehmer, K. R., (2021). Bodily Experiences of Illness and Treatment as Information Work: The Case of Chronic Kidney Disease. Proceedings of the ACM on Human-Computer Interaction, 5(CSCW2), 1-28. doi:10.1145/3479527

  • Pine, K. H., Lee, M., Whitman, S. A., Chen, Y., Henne, K., (2021) Making Sense of Risk Information amidst Uncertainty: Individuals’ Perceived Risks Associated with the COVID-19 Pandemic. In Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems (pp. 1-15). doi:10.1145/3411764.3445051 **Honorable Mention Award.

  • Jelen, B., Richards, O. K., Whitman, S. A., Ongwere, T., Kresnye, K. C., & Siek, K. A. (2020). Exploring the Use of Electronics to Customize Pervasive Health Technologies with Older Adult Crafters. In Proceedings of the 14th EAI International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth '20). p. 166–178. doi:10.1145/3421937.3421976

Presentations

Conference Workshops

  • Whitman, S. A., Pine, K. H., Harlow, J., (November 2023). Endangered Healthcare Ecologies: Understanding and Addressing Patient Work, 2024 Society for Social Studies of Science (4S) Conference, Honolulu, HI, USA

  • Lorenz, E., Thorsteinsdottir, B., Albright, Robert., Boehmer, K., Mair, F., Whitman S. A. (October 2019). Large Group Workshop: Patient Cases, Care that Fits 2019 Conference, Knowledge Enterprise Research Unit, Mayo Clinic, Rochester, MN, USA

Conference Presentations

  • Whitman, S. A., Pine, K. H., Boehmer, K. R., Espinoza Suarez, N. R., Organick-Lee, P., Thota, A., Thorsteinsdottir, B., Pawar, A., Montori, V. M., (September, 2019), Enacting Treatment: The Case of Chronic Kidney Disease and Dialysis, 2019 Society for Social Studies of Science (4S) Conference, New Orleans, LA, USA

  • Thorsteinsdottir, B., Lorenz, E., Albright, R., and Whitman, S. (October, 2018). Doing MDM and SDM in Practice-Patient Case Workshop, 2018 Minimally Disruptive Medicine Conference, Knowledge Enterprise Research Unit, Mayo Clinic, Rochester, MN, USA

Poster Presentations

  • Lozano, F., Jaxon, M., Lee, D., Whitman, S.A., & Kizer, E. (September, 2024). Optimizing SDOH Screening and Referrals at NATIVE HEALTH: A Process Improvement Initiative Using the PRAPARE Tool. Celebration for Resilience 2024 Symposium, Tempe, Arizona, USA

  • Siraj, H., Whitman, S. A., Pine, K. H., & Lee, M. (April, 2024). Exploring Domestic Workers' Risk Work During the COVID-19 Pandemic. iConference 2024 Proceedings, Changchun, China

  • Kizer, E., Robles, B., Pine, K., Whitman, S., Smith, N., Jaxon, M., Lozano, F. (October, 2023). Integrating Social Determinants into Primary Care at a Community Health Center: The ASU and NATIVE HEALTH Helping Hands Program. Collaborative Family Healthcare Association Conference. Phoenix, AZ, USA.

  • Kizer, E., Robles, B., Pine, K., Whitman, S., Smith, N., Jaxon, M., Lozano, F. (November, 2023). Homelessness Service Navigation in Maricopa County. Knowledge Exchange for Resilience Celebration. Tempe, AZ, USA

  • Whitman, S., (May, 2018). Patient-Centered Exploration and Innovation to Understand and Ease the Burden of Dialysis, School for the Science of Health Care Delivery Research Poster Symposium, School of Health Solutions, Arizona State University, Phoenix, AZ, USA

  • Richards, O., Whitman, S., Jelen, B., Siek, K., (June, 2016). Empowering Older Adult Creative Groups with Maker Technology. Indiana University ProHealth REU Presentation. Bloomington, IN, USA

  • Whitman, S. (May, 2016). The Quantified Self for Customized Health Care, Undergraduate Research Poster Symposium, School of Health Solutions, Arizona State University, Phoenix, AZ, USA

Other Invited Engagements

Public Engagement

Blogs

  • Kabella, D., Whitman, S., & Pine, K., (July 21, 2022). “Enacting Personhood, Legitimacy, and Autonomy: What STS can Reveal about the Dobbs v. Jackson Women’s Health Organization Decision.” Society for Social Studies of Science (4S) Reflections. (LINK)

  • Whitman, S., (August 16, 2017). “Copper Hen Bakery & Cafe Offers Delicious Treats and Community” Good Food Finder. (LINK)

Podcasts

  • Whitman, S. (Guest Expert), (April 2, 2024). Browne, B., Rasmussen, L. (Hosts). “Between a Rock and a Hard Place: The Difficulty Of Navigating the Healthcare System” Brain Health 365. (LINK)

Grants

  • Implementation and Evaluation of a Combined Screening and Referral Process to Address nSDOH in a Native American Community Health Clinic (Under Review). Agency for Health Care Research and Quality (AHRQ) Small Health Services Research Grant Program. $99,912. PI’s: Pine, Kathleen H., Kizer, E. Co-Investigator: Whitman, S. 2024

  • Patient-Centered Exploration and Innovation to Understand and Ease the Burden of Dialysis (Awarded). Mayo Clinic and ASU Alliance for Health Care Collaborative Research Seed Grant Program 2018. $50,000. ASU PI: Pine, Kathleen H., Mayo Clinic PI: Montori, Victor M., Co-Investigators: Boehmer. K., Behnken, E., Thorsteinsdottir, B., Whitman, S. 2017