Personal and Ubiquitous Computing

, Volume 18, Issue 5, pp 1277–1290 | Cite as

Design challenges for ubiquitous and personal computing in chronic disease care and patient empowerment: a case study rethinking diabetes self-monitoring

Original Article

Abstract

This paper aims to raise issues concerning the design of self-care technology, which supports an increasing number of individuals’ chronic disease in everyday life. It discusses the results of an ethnographic study that exposes the intricacies and practicalities of managing diabetes in everyday life, and informs the patient-centric design of a diabetes journaling tool. It also sheds light on some everyday chronic self-care practices and suggests how to re-think some of the assumptions and connotations of the current medical model and the traditional role of the patient, which is not always fully appreciated in the design of ubiquitous and personal technologies for the patient. In particular, the analysis covers: the open-ended and uncertain nature of chronic care, the wide inter- and intra-variability of patients’ conditions and attitudes towards the disease, and the need for more symmetrical interactions and consultations with medical experts. These findings informed the design of a proof of concept called Tag-it-Yourself (TiY), a mobile journaling tool that enables the personalisation of self-monitoring practices. A final discussion on the actual use of the TiY tool is also offered along with general implications for the design of self-care technologies and an outline of future directions for research in this area.

Keywords

Self-care Chronic disease Patient empowerment Self-monitoring Diabetes 

References

  1. 1.
    Geissbuhler A (2010) How can eHealth fix broken health systems? Methods Inf Med 50:297–298Google Scholar
  2. 2.
    Aarhus R, Ballegaard SA, (2010) Negotiating boundaries: managing disease at home, in proceedings of the 28th international conference on human factors in computing system, ACM, NY ISBN: 978-1-60558-929-9Google Scholar
  3. 3.
    Bodenheimer T et al (2002) Patient self-management of chronic disease in primary care. JAMA 288(19):2469–2475CrossRefGoogle Scholar
  4. 4.
    Wagner E, Groves T (2002) Care for chronic diseases. Br Med J 325:913–914CrossRefGoogle Scholar
  5. 5.
    Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J (2002) Self-management approaches for people with chronic conditions: a review. Patient Educ Couns 48:177–187CrossRefGoogle Scholar
  6. 6.
    Nettleton S, Burrows R (2002) E-scaped medicine? Information, reflexivity and health. Crit Soc Policy 23:16Google Scholar
  7. 7.
    Hardey M (2001) E-health: the internet and the transformation of patients into consumer and producers of Health Knowledge. Inf Commun Soc 4(3):388–405CrossRefGoogle Scholar
  8. 8.
    Koch S (2006) Home telehealth—current state and future trends. Int J Med Inform 75(8):565–576CrossRefGoogle Scholar
  9. 9.
    Williams A (2002) Changing geographies of care: employing the concept of therapeutic landscape as a framework in examining home space. Soc Sci Med 55(1):141–154CrossRefGoogle Scholar
  10. 10.
    Berg M (1997) Rationalizing medical work: decision support techniques and medical practices. MIT Press, CambridgeGoogle Scholar
  11. 11.
    Lehoux P (2006) The problem of health technology: policy implications for modern health care systems. Routledge, New YorkGoogle Scholar
  12. 12.
    Storni C, Bannon L (2011) Towards the design of truly patient-centred healthcare infrastructures: a socio-technical approach to self care. In: Chilamkurti N Health informatics: an adaptive communication technology for future healthcare. Nova Science Publishers, New York (in press)Google Scholar
  13. 13.
    Lachmund J (1999) Making sense of sound: auscultation and lung sound codification. Nineteenth-Century Fr Ger Med 24(4):419–450Google Scholar
  14. 14.
    Leder D (1992) A tale of two bodies: the Cartesian corpse and the lived body. In: Leder D (ed) The body in medical thought and practice. Kluwer Academic Publishers, AmsterdamCrossRefGoogle Scholar
  15. 15.
    Axelrod I, Fitzpatrick G, Burridge J (2009) The reality of homes fit for heroes: design challenges for rehabilitation technology at home. J Assist Technol 3(2):9CrossRefGoogle Scholar
  16. 16.
    Palen L, Aalokke S (2006) Of pill boxes and piano benches: “Home-made” methods for managing medication. In: Hinds PJ, Martin D (eds) Proceedings of computer support cooperative work, November 4–8, ACM, New York, 2006, pp 79–88Google Scholar
  17. 17.
    Akrich M (2010) From communities of practice to epistemic communities: health mobilizations on the Internet. Sociol Res Online 15(2):10CrossRefGoogle Scholar
  18. 18.
    Beun J (2003) Electronic healthcare record: a way to empower the patient. Int J Med Inform 69(2–3):191–196CrossRefGoogle Scholar
  19. 19.
    Tang P, Ash J, Bates P, Overhage M, Sands D (2006) Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. JAMIA 13:121–126Google Scholar
  20. 20.
    Uckert F, Goerz M, Ataian M, Tessmann S, Prokosch H (2003) Empowerment of patient and communication with health care professionals through an electronic health record. Int J Med Inform 70(2–3):99–108CrossRefGoogle Scholar
  21. 21.
    Ball M, Lillis J (2001) E-health: transforming the physician/patient relationship. Int J Med Inform 61:1–10CrossRefGoogle Scholar
  22. 22.
    Oudshoorn N (2008) Diagnosis at a distance: the invisible work of patients and healthcare professionals in cardiac telemonitoring technology. Sociol Health Illn 30(2):272–288CrossRefGoogle Scholar
  23. 23.
    Nicolini D (2006) The work to make telemedicine work: a social and articulative view. Soc Sci Med 62:2754–2767CrossRefGoogle Scholar
  24. 24.
    Ma C, Warren J, Phillips P, Stanek J (2005) Empowering patient with essential information and communication support in the context of diabetes. Int J Med Inform 75(8):577–596CrossRefGoogle Scholar
  25. 25.
    Schuler D, Namioka A (1993) Participatory design: principles and practices. Erlbaum, HillsdaleGoogle Scholar
  26. 26.
    Ballegaard SA, Hansen TR, Kyng M (2008) Health care in everyday life: designing healthcare services for daily life. Proceedings of CHI’08 (Florence, Italy, April 05–10, 2008) ACM, New York, NY, pp 1807–1816Google Scholar
  27. 27.
    Storni C (2010) Multiple forms of appropriation in self-monitoring technology: reflections on the role of evaluation in future self-care. Int J Hum Comput Interact 25(5):537–561CrossRefGoogle Scholar
  28. 28.
    Mamykina L, Mynatt E, Kaufman D (2006) Investigating health management practices of individual with diabetes. In: CHI proceedings, Montreal, QCGoogle Scholar
  29. 29.
    Mamykina L et al (2008) MAHI: investigation of social scaffolding for reflective thinking in diabetes management In: Proceeding of the 26th annual SIGCHIGoogle Scholar
  30. 30.
    Mamykina L et al (2010) Constructing identities through storytelling in diabetes management. In: CHI proceedings, Atlanta, GA, USAGoogle Scholar
  31. 31.
    Smith B, Frost J, Albayrak M, Sudhakar R (2007) Integrating glucometers and digital photography as experience capture tools to enhance patient understanding and communication of diabetes. Pers Ubiquit Comput 11(4):273–286CrossRefGoogle Scholar
  32. 32.
    Preuveneers D, Berbers Y (2008) Mobile phones assisting health self care: a diabetes case study. Mobile HCI08, September 2–5, Amsterdam, The NetherlandsGoogle Scholar
  33. 33.
    Kanstrup AM et al (2006) Design for more: an ambient perspective on diabetes. In: Participatory design conference proceedings, Bloomington, Indiana UniversityGoogle Scholar
  34. 34.
    Orel T (1995) Designing self-diagnostic devices. In: Buchanan R, Margolin V (eds) Discovering design. The University of Chicago Press, ChicagoGoogle Scholar
  35. 35.
    Stock S, Drabik A, Buscher G (2010) German diabetes management programs improve quality of care and curb costs. Health Aff 29(12):2197–2205CrossRefGoogle Scholar
  36. 36.
    Szecsenyi J, Peters-Klimm F (2008) German diabetes disease management programs are appropriate for restructuring care according to the chronic care model, an evaluation with the patient assessment of chronic illness care instrument. Diabetes Care 31(6):1150–1154CrossRefGoogle Scholar
  37. 37.
    Mol A (2008) The logic of care: health and the problem of patient choice. Routledge, New YorkGoogle Scholar
  38. 38.
    Glaser BG, Strauss A (1967) The discovery of grounded theory. Aldine Publishing Company, New YorkGoogle Scholar
  39. 39.
    Kelleher D (1988) Coming to terms with diabetes: coping strategies and non-compliance. In: Anderson Robert, Bury Michael (eds) Living with chronic illness. Unwin Hyman, London, pp 155–187Google Scholar
  40. 40.
    Storni C (2013) Patient’s lay expertise in chronic self care: a case study in type 1 diabetes. Health Expect (in press)Google Scholar
  41. 41.
    Radley A (1994) Making sense of illness: the social psychology of health and disease. Sage, LondonGoogle Scholar
  42. 42.
    Star SL (1989) The structure of ill-structured solutions: boundary objects and heterogeneous distributed problem solving. In: Huhns M, Gasser L (eds) Distributed artificial intelligence, vol 2. Morgan Kaufmann Publishers Inc, San FranciscoGoogle Scholar
  43. 43.
    O’Murchu N, Sigfridsson A (2010) Tag it yourself. In: Proceedings of designing interactive systems, Aurhus, DKGoogle Scholar
  44. 44.
    Storni C (2011) Complexity in an uncertain and cosmopolitan world. Rethinking personal health technology in diabetes with the Tag-it-Yourself. Psychnol J 9:165–185Google Scholar
  45. 45.
    Storni C (2013) Design for future uses: pluralism, fetishism and ignorance. In: Proceedings of the nordes design research conference, MalmoGoogle Scholar
  46. 46.
    Cartwright L (2000) Reach out and heal someone: telemedicine and the globalization of health care. Health 4(3):347–377Google Scholar
  47. 47.
    Brown P, McCormick S, Mayer B, Zavestoski S, Morello-Frosch R, Altman RG, Senier L (2006) “A Lab of Our Own” environmental causation of breast cancer and challenges to the dominant epidemiological paradigm. Sci Technol Hum Values 31(5):499–536CrossRefGoogle Scholar
  48. 48.
    Roitman H, Mesika Y, Tsimerman Y, Yogev S (2011) A unified approach for social media discovery. doi:10.3233/978-1-60750-806-9-3
  49. 49.
    Frydman GJ (2009) Patient-driven research: rich opportunities and real risks. J Particip Med 1(1):e12. Available at: http://www.jopm.org/index.php/jpm/article/view/28/18 Google Scholar
  50. 50.
    Dyson E (2009) Why participatory medicine? J Particip Med 1:e1. Available at: http://www.jopm.org/opinion/editorials/2009/10/21/why-participatory-medicine
  51. 51.
    Storni C (2010) Report on the ‘Reassembling Health Workshop: exploring the role of the Internet of Things’. J Particip Med 2. Available at: http://www.jopm.org/media-watch/conferences/2010/09/29/report-on-the-reassembling-health-workshop-exploring-the-role-of-the-internet-of-things/
  52. 52.
    Eysenbach G (2008) Medicine 2.0: social networking, collaboration, participation, apomediation, and openness. J Med Internet Res 10(3):e22+Google Scholar
  53. 53.
    Hughes B, Joshi I, Wareham J (2008) Health 2.0 and medicine 2.0: tensions and controversies in the field. J Med Internet Res 10(3):23CrossRefGoogle Scholar
  54. 54.
    Ledford H (2010) Life hackers. Nature 467:650–652CrossRefGoogle Scholar
  55. 55.
    Delfanti A (2013) Biohackers: the politics of open science. Pluto Press, LondonGoogle Scholar
  56. 56.
    Rabeharisoa V, Callon M (2002) The involvement of patients’ associations in research. Int Soc Sci J 54(171):57CrossRefGoogle Scholar
  57. 57.
    Barbot J (2006) How to build an “active” patient? The work of AIDS associations in France. Soc Sci Med 62:538–551CrossRefGoogle Scholar
  58. 58.
    Epstein S (1995) The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Sci Technol Hum Values 20(4):408–437CrossRefGoogle Scholar
  59. 59.
    Hartsock N (1998) The feminist standpoint revisited and other essays. Westview Press, BoulderGoogle Scholar
  60. 60.
    Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J (2010) Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res 12(2)Google Scholar
  61. 61.
    Utley-Smith Q, Colón-Emeric CS, Lekan-Rutledge D et al (2009) Nature of staff—family interactions in nursing homes: staff perceptions. J Aging Stud 23:168–177CrossRefGoogle Scholar

Copyright information

© Springer-Verlag London 2013

Authors and Affiliations

  1. 1.Computer Science and Information Systems Department, Interaction Design CentreUniversity of LimerickLimerickIreland

Personalised recommendations