• Haley MacLeod
  • Anthony Tang
  • Sheelagh Carpendale


Many people with chronic illness suffer from debilitating symptoms or episodes that inhibit normal day-to-day function. Pervasive tools offer the possibility to help manage these conditions, particularly by helping people understand their conditions. But, it is unclear how to design these tools, as prior designs have focused on effortful tracking and many see those tools as a burden to use. We report here on an interview study with 12 individuals with chronic illnesses who collect personal data. We learn that these people are motivated through self-discovery and curiosity. We explore how these concepts may support the design of tools that engage curiosity and encourage self-discovery, rather than emphasize the behaviour change aspect of chronic illness management.


  1. J. Anhøj, and L. Nielsen, Quantitative and qualitative usage data of an internet-based asthma monitoring tool. Journal of Medical Internet Research 6, 3 (2004).
  2. S. A. Ballegaard, T. R. Hansen, and M. Kyng, Healthcare in everyday life: designing healthcare services for daily life. Proc. CHI 2008, ACM Press (2008), 1807–1816.
  3. V. Baos, F. Ester, A. Castellanos, G. Nocea, M. T. Caloto, and W. C. Gerth, Use of a structured migraine diary improves patient and physician communication about migraine disability and treatment outcomes. International Journal of Clinical Practice 59, 3 (2005), 281–286.
  4. L. K. Bartholomew, R. S. Gold, G. S. Parcel, et al. Watch, discover, think, and act: evaluation of computer-assisted instruction to improve asthma self-management in inner-city children. Patient Education and Counseling 39, 2 (2000), 269–280.
  5. J. Bauer, S. Consolvo, B. Greenstein, et al. ShutEye: encouraging awareness of healthy sleep recommendations with a mobile, peripheral display. Proc. CHI 2012, ACM Press (2012), 1401–1410.
  6. E. P. S. Baumer, S. J. Katz, J. E. Freeman, et al. Prescriptive persuasion and open-ended social awareness: expanding the design space of mobile health. Proc. CSCW 2012, (2012), 475–484.
  7. J. S. Beaudin, S. S. Intille, and M. E. Morris, To track or not to track: user reactions to concepts in longitudinal health monitoring. Journal of Medical Internet Research, (2006).
  8. T. Bodenheimer, K. Lorig, H. Holman, and K. Grumbach, Patient self-management of chronic disease in primary care. Journal of the American Medical Association 288, 19 (2002), 2469–2475.
  9. S. Consolvo, P. Klasnja, D. W. McDonald, et al. Flowers or a robot army?: encouraging awareness & activity with personal, mobile displays. Proc. Ubicomp 2008, ACM Press (2008), 54–63.
  10. H. I. Day, Curiosity and the interested explorer. Performance & Instruction 21, 4 (1982), 19–22.
  11. C. A. Eastwood, L. Travis, T. T. Morgenstern, and E. K. Donaho, Weight and symptom diary for self-monitoring in heart failure clinic patients. Journal of Cardiovascular Nursing 22, 5 (2007), 382–389.
  12. L. Festinger, A Theory of Cognitive Dissonance. Stanford University Press, 1957.
  13. Fitbit Inc. Fitbit. 2012.
  14. J. Froehlich, T. Dillahunt, P. Klasnja, et al. UbiGreen: investigating a mobile tool for tracking and supporting green transportation habits. Proc. CHI 2009, ACM Press (2009), 1043–1052.
  15. B. G. Glaser, and A. L. Strauss, The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine de Gruyter, 1967.
  16. L. T. Harris, J. Tufano, T. Le, et al. Designing mobile support for glycemic control in patients with diabetes. Journal of biomedical informatics 43, 5 (2010), S37–S40.
  17. A. C. King, D. K. Ahn, B. M. Oliveira, A. A. Atienza, C. M. Castro, and C. D. Gardner, Promoting physical activity through hand-held computer technology. American journal of preventive medicine 34, 2 (2008), 138.
  18. M. L. Lee, and A. K. Dey, Reflecting on pills and phone use: supporting awareness of functional abilities for older adults. Proc. CHI 2011, ACM Press (2011), 2095–2104.
  19. I. Li, A. Dey, and J. Forlizzi, A stage-based model of personal informatics systems. Proc. CHI 2010, ACM Press (2010), 557–566.
  20. I. Li, A. K. Dey, and J. Forlizzi, Understanding my data, myself: supporting self-reflection with ubicomp technologies. Proc. CHI 2011, ACM Press (2011), 405–414.
  21. J. Lin, L. Mamykina, S. Lindtner, G. Delajoux, and H. Strub, Fish’n’Steps: encouraging physical activity with an interactive computer game. Proc. Ubicomp 2006, ACM Press (2006), 261–278.
  22. E. A. Locke, Toward a theory of task motivation and incentives. Organizational Behaviour and Human Performance 3, 2 (1968), 157–189.
  23. R. Luckmann, and A. Vidal, Design of a handheld electronic pain, treatment and activity diary. Journal of Biomedical Informatics 43, 5 (2010), S32–S36.
  24. J. Maitland, and M. Chalmers, Self-monitoring, self-awareness, and self-determination in cardiac rehabilitation. Proc. CHI 2010, (2010), 1213–1222.
  25. L. Mamykina, E. Mynatt, P. Davidson, and D. Greenblatt, MAHI: investigation of social scaffolding for reflective thinking in diabetes management. Proc. CHI 2008, ACM Press (2008), 477–486.
  26. L. Mamykina, E. D. Mynatt, and D. R. Kaufman, Investigating health management practices of individuals with diabetes. Proc. CHI 2006, ACM Press (2006), 927–936.
  27. E. Mattila, I. Korhonen, J. H. Salminen, et al. Empowering citizens for well-being and chronic disease management with wellness diary. Information Technology in Biomedicine, IEEE Transactions on 14, 2 (2010), 456–463.
  28. M. Morris, S. Intille, and J. Beaudin, Embedded assessment: overcoming barriers to early detection with pervasive computing. Pervasive Computing, (2005), 333–346.
  29. D. Preuveneers, and Y. Berbers, Mobile phones assisting with health self-care: a diabetes case study. Proc. MobileHCI 2008, ACM Press (2008), 177–186.
  30. J. O. Prochaska, and W. F. Velicer, The transtheoretical model of health behaviour change. American Journal of Health Promotion 12, 1 (1997), 38–48.
  31. Quantified Self Labs. Quantified Self | Self Knowledge Through Numbers.
  32. S. Rachman, The evolution of cognitive behaviour therapy. In Science and practice of cognitive behaviour therapy. Oxford University Press, 1997, 1–26.
  33. S. Roberts, The unreasonable effectiveness of my self-experimentation. Medical Hypotheses, (2010), 482–489.
  34. V. Schwanda, S. Ibara, L. Reynolds, and D. Cosley, Side effects and gateway tools: advocating a broader look at evaluating persuasive systems. Proc. CHI 2011, (2011), 345–348.
  35. B. F. Skinner, Walden Two. Prentice-Hall, 1948.
  36. S. Stieger, and A. S. Göritz, Using instant messaging for Internet-based interviews. CyberPsychology & Behaviour 9, 5 (2006), 552–559.
  37. A. Voida, E. D. Mynatt, T. Erickson, and W. A. Kellogg, Interviewing over instant messaging. CHI’04 extended abstracts on Human factors in computing systems, (2004), 1344–1347.
  38. G. Wolf, The data-driven life. The New York Times, (2010).
  39. T. J. Yun, H. Y. Jeong, T. D. Hill, et al. Using SMS to provide continuous assessment and improve health outcomes for children with asthma. Proc. IHI 2012, ACM Press (2012), 621–630.
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