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Blowing in the wind: unanchored patient information work during cancer care

Published: 10 April 2010 Publication History

Abstract

Patients do considerable information work. Technologies that help patients manage health information so they can play active roles in their health-care, such as personal health records, provide patients with effective support for focused and sustained personal health tasks. Yet, little attention has been paid to patients' needs for information management support while on the go and away from their personal health information collections. Through a qualitative field study, we investigated the information work that breast cancer patients do in such 'unanchored settings'. We report on the types of unanchored information work that patients do over the course of cancer treatment, reasons this work is challenging, and strategies used by patients to overcome those challenges. Our description of unanchored patient information work expands our understanding of patients' information practices and points to valuable design directions for supporting critical but unmet needs.

References

[1]
Ballegaard, S.A., Hansen, T.R., & Kyng, M. Healthcare in everyday life. In Proc. CHI '08. (2008).
[2]
Berstein, M., Van Kleek, M., & Karger, D. Information scraps: How and why information eludes our personal information management tools. ACM Transactions on Information Systems, 26, 4, (2008).
[3]
Consolvo, S., Roessler, P., Shelton, B.E., LaMarka, A., Schilit, B., & Bly, S. Technology for care networks of elders. IEEE Pervasive Computing,3, 2, (2004).
[4]
Dai, L., Lutters, W.G., & Bower, C. Why use memo at all? Restructuring mobile applications to support informal notetaking. In Proc. CHI '05, (2005).
[5]
Flanagan, J.C. The critical incident technique. Psychological Bulletin, 51, 4, (1954).
[6]
Frost, J. & Smith, B. 2003. Visualizing health: Imagery in diabetes education. In Proc. DUX '03, (2003).
[7]
Gorman, P., Ash, J., Lavelle, M, Lyman, J., Delcambre, L., Maier, D., Weaver, J., & Bowers, S. Bundles in the Wild. Library trends, 49, 2, (2000).
[8]
Hayes, G.R., Abowd, G.D., Davis, J.S., Blount, M.L., Ebling, M., & Mynatt, E.D. Opportunities for Pervasive Computing in Chronic Cancer Care. In Proc. Pervasive Computing '08, (2008).
[9]
Jenkins, V., Fallowfield, L., & Saul, J. Information needs of patients with cancer. British Journal of Cancer, 84, 1, (2001).
[10]
Kim, M.I, & Johnson, K.B. Personal health records. Journal of American Medical Informatics Association, 9, 2, (2002).
[11]
Leydon, G.M. et al. Cancer patients' information needs and information seeking behaviour. BMJ, 320, (2000).
[12]
Lin, M., Lutters, W.G., & Kim, T.S. Understanding the micronote lifecycle: Improving mobile support for informal notetaking. In Proc. CHI '04, (2004).
[13]
Mamykina, L., Mynatt, E., Davidson, P., & Greenblatt, D. MAHI: investigation of social scaffolding for reflective thinking in diabetes management. In Proc. CHI '08, (2008).
[14]
Moen, A., & Brennan, P.F. Health@Home: The work of health information management in the household (HIMH): Implications for consumer health informatics (CHI) innovations. JAMIA, 12, 6 (2005).
[15]
Mynatt, E.D., Rowan, J., Jacobs, A., & Craighill, S. Digital family portraits: Supporting peace of mind for extended family members. In Proc. CHI '01, (2001).
[16]
Pratt, W., Unruh, K., Civan, A., & Skeels, M, Personal health information management. CACM, 49, 1, (2006).
[17]
Strauss, A., & Corbin, J. Basics of Qualitative Research. Thousand Oaks: Sage Publications (1998).
[18]
Tian, Y., & Robinson, J.D. Incidental health information use and media complementarity. Patient Education and Counseling, 71, 3, (2008).
[19]
Unruh, K.T., & Pratt, W. The Invisible work of being a patient and implications for health care. In Proc. EPIC '08, (2008).
[20]
Unruh, K.T., Skeels, M., Civan Hartzler, A. & Pratt, W. Transforming clinic environments into information workspaces for patients. In Proc. CHI '10, (2010).

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      cover image ACM Conferences
      CHI '10: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems
      April 2010
      2690 pages
      ISBN:9781605589299
      DOI:10.1145/1753326
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      Published: 10 April 2010

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      1. mobile computing
      2. personal health informatics
      3. user study

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      • (2024)“Be with me and stay with me”: Insights from Co-Designing a Digital Companion to Support Patients Transitioning from Hospital to Cardiac RehabilitationProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661633(890-904)Online publication date: 1-Jul-2024
      • (2024)The Hidden Burden: Encountering and Managing (Unintended) Stigma in Children with Serious IllnessesProceedings of the ACM on Human-Computer Interaction10.1145/36410218:CSCW1(1-35)Online publication date: 26-Apr-2024
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