ABSTRACT
Self-management technologies are promising in healthcare. In the name of patient empowerment, they can address an important challenge: how to meet an increasing demand for care without additional resources. We designed and evaluated the PICASSO-Tx system: a technology solution to support transplant patients and their self-management of diet, physical activity and medication adherences. In a Sield study, 19 patients used the system for two weeks at home. We discovered that although we intended patients to become actors in the management of their own health, they saw themselves rather as a subject, leaving the active role for caregivers. In this paper, we describe how patients expected their data to be shared with others, how they perceived the system as a tool for monitoring by caregivers, and what expectations towards these caregivers this perception brings. Furthermore, we discuss the barriers we encountered caused by the 'self' and conclude with design recommendations for self-management technologies in healthcare related to these expectations, perceptions, and barriers.
- Eric P.S. Baumer, Phil Adams, Vera D. Khovanskaya, Tony C. Liao, Madeline E. Smith, Victoria Schwanda Sosik, and Kaiton Williams. 2013. Limiting, Leaving, and (Re)Lapsing: An Exploration of Facebook Non-use Practices and Experiences. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '13). ACM, New York, NY, USA, 3257--3266. Google ScholarDigital Library
- Niels van Berkel, Chu Luo, Denzil Ferreira, Jorge Goncalves, and Vassilis Kostakos. 2015. The Curse of Quantified-self: An Endless Quest for Answers. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing and Proceedings of the 2015 ACM International Symposium on Wearable Computers (UbiComp '15). ACM, New York, NY, USA, 973--978. Google ScholarDigital Library
- Amritpal Singh Bhachu, Nicolas Hine, and John Arnott. 2008. Technology Devices for Older Adults to Aid Self Management of Chronic Health Conditions. In Proceedings of the 10th International ACM SIGACCESS Conference on Computers and Accessibility (Assets '08). ACM, New York, NY, USA, 59--66. Google ScholarDigital Library
- Uta Brandes, Sonja Stitch, and Miriam Wender. 2008. Design by Use: The Everyday Metamorphosis of Things. Birkhäuser GmbH, Basel Boston, Mass. Berlin.Google Scholar
- Jennie Carroll. 2004. Completing design in use: Closing the appropriation cycle. ECIS 2004 Proceedings. 44.Google Scholar
- C. Charles, T. Whelan, and A. Gafni. 1999. What do we mean by partnership in making decisions about treatment? BMJ 319, 7212 (September 1999), 780--782.Google ScholarCross Ref
- James Clawson, Jessica A. Pater, Andrew D. Miller, Elizabeth D. Mynatt, and Lena Mamykina. 2015. No Longer Wearing: Investigating the Abandonment of Personal Health-tracking Technologies on Craigslist. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp '15). ACM, New York, NY, USA, 647--658. Google ScholarDigital Library
- Shirley Coyle, Yanzhe Wu, King-Tong Lau, Danilo De Rossi, Gordon Wallace, and Dermot Diamond. 2007. Smart Nanotextiles: A Review of Materials and Applications. MRS Bulletin 32, 5 (May 2007), 434--442.Google ScholarCross Ref
- Kate Crawford, Jessa Lingel, and Tero Karppi. 2015. Our metrics, ourselves: A hundred years of self-tracking from the weight scale to the wrist wearable device. European Journal of Cultural Studies (June 2015).Google Scholar
- Danielle D'Amour, Lise Goulet, Jean-François Labadie, Leticia San Martín-Rodriguez, and Raynald Pineault. 2008. A model and typology of collaboration between professionals in healthcare organizations. BMC Health Serv Res 8, (September 2008), 188.Google Scholar
- Jan Derboven. 2017. Beyond Designer's Intentions. A Semiotic Exploration of Technology Interpretation and Appropriation. (April 2017). Retrieved January 17, 2018 from https://lirias.kuleuven.be/handle/123456789/579302Google Scholar
- Paul Dourish. 2003. The Appropriation of Interactive Technologies: Some Lessons from Placeless Documents. Computer Supported Cooperative Work (CSCW) 12, 4 (December 2003). 465--490. Google ScholarDigital Library
- Julie Doyle, Niamh Caprani, and Rodd Bond. 2015. Older Adults' Attitudes to Self-management of Health and Wellness Through Smart Home Data. In Proceedings of the 9th International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth '15). ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering), ICST, Brussels, Belgium, Belgium, 129--136. Google ScholarDigital Library
- Daniel A. Epstein, Monica Caraway, Chuck Johnston, An Ping, James Fogarty, and Sean A. Munson. 2016. Beyond Abandonment to Next Steps: Understanding and Designing for Life After Personal Informatics Tool Use. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). ACM, New York, NY, USA, 1109--1113. Google ScholarDigital Library
- BJ Fogg. 2009. A Behavior Model for Persuasive Design. In Proceedings of the 4th International Conference on Persuasive Technology (Persuasive '09), 40:1--40:7. Google ScholarDigital Library
- Verena Fuchsberger, Martin Murer, and Manfred Tscheligi. 2014. Human-computer Non-interaction: The Activity of Non-use. In Proceedings of the 2014 Companion Publication on Designing Interactive Systems (DIS Companion '14). ACM, New York, NY, USA, 57--60. Google ScholarDigital Library
- Susan Gasson. 2003. Human-centered vs. user-centered approaches to information system design. JITTA: Journal of Information Technology Theory and Application; Hong Kong 5, 2 (2003), 29--46.Google Scholar
- Kevin Gaunt, Júlia Nacsa, and Marcel Penz. 2014. Baby Lucent: Pitfalls of Applying Quantified Self to Baby Products. In CHI '14 Extended Abstracts on Human Factors in Computing Systems (CHI EA '14). ACM, New York, NY, USA, 263--268. Google ScholarDigital Library
- Daniel Harrison, Paul Marshall, Nadia Bianchi-Berthouze, and Jon Bird. 2015. Activity Tracking: Barriers, Workarounds and Customisation. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp '15). ACM, New York, NY, USA, 617--621. Google ScholarDigital Library
- Hayati Havlucu, Idil Bostan, Aykut Coskun, and Öuzhan Özcan. 2017. Understanding the Lonesome Tennis Players: Insights for Future Wearables. In Proceedings of the 2017 CHI Conference Extended Abstracts on Human Factors in Computing Systems (CHI EA '17). ACM, New York, NY, USA, 1678--1685. Google ScholarDigital Library
- Sari Kujala and Kaisa Väänänen-Vainio-Mattila. 2008. Value of Information Systems and Products: Understanding the Users' Perspective and Values. JITTA: Journal of Information Technology Theory and Application; Hong Kong 9, 4 (2008), 23--39.Google Scholar
- Victor R. Lee and Mary Briggs. 2014. Lessons Learned from an Initial Effort to Bring a Quantified Self "Meetup" Experience to a New Demographic. In Proceedings of the 2014 ACM International Joint Conference on Pervasive and Ubiquitous Computing: Adjunct Publication (UbiComp '14 Adjunct). ACM, New York, NY, USA, 707--710. Google ScholarDigital Library
- Ian Li, Anind Dey, and Jodi Forlizzi. 2010. A Stage-based Model of Personal Informatics Systems. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '10). ACM, New York, NY, USA, 557--566. Google ScholarDigital Library
- Ian Li, Anind K. Dey, and Jodi Forlizzi. 2011. Understanding My Data, Myself: Supporting Self-reflection with Ubicomp Technologies. In Proceedings of the 13th International Conference on Ubiquitous Computing (UbiComp '11). ACM, New York, NY, USA, 405--414. Google ScholarDigital Library
- Deborah Lupton. 2012. Medicine as Culture: Illness, Disease and the Body (3rd ed.). London. Retrieved January 23, 2018 from http://sk.sagepub.com/books/medicine-as-culture-3eGoogle Scholar
- Deborah Lupton. 2012. M-health and health promotion: The digital cyborg and surveillance society. Soc Theory Health 10, 3 (August 2012), 229--244.Google ScholarCross Ref
- Deborah Lupton. 2013. Quantifying the body: monitoring and measuring health in the age of mHealth technologies. Critical Public Health 23, 4 (December 2013), 393--403.Google ScholarCross Ref
- Ananthidewi Maniam, Jaspaljeet Singh Dhillon, and Nilufar Baghaei. 2015. Determinants of Patients' Intention to Adopt Diabetes Self-Management Applications. In Proceedings of the 15th New Zealand Conference on Human-Computer Interaction (CHINZ 2015). ACM, New York, NY, USA, 43--50. Google ScholarDigital Library
- Miriam McMullan. 2006. Patients using the Internet to obtain health information: how this affects the patient-health professional relationship. Patient Educ Couns 63, 1-2 (October 2006), 24--28.Google ScholarCross Ref
- Jean-Francois De Moya and Jessie Pallud. 2017. QUANTIFIED SELF: A LITERATURE REVIEW BASED ON THE FUNNEL PARADIGM. Research Papers (June 2017), 1678--1694.Google Scholar
- Toluwalogo B. Odumosu. 2009. Interrogating mobiles: A story of Nigerian appropriation of the mobile phone. Rensselaer Polytechnic Institute, United States -- New York. Retrieved January 17, 2018 from https://search.proquest.com/docview/304986497/abstract/494CD3A2F484F9CPQ/1Google Scholar
- J. Richter, M. Eisemann, and E. Zgonnikova. 2001. Doctors' authoritarianism in end-of-life treatment decisions. A comparison between Russia, Sweden and Germany. J Med Ethics 27, 3 (June 2001), 186--191.Google ScholarCross Ref
- Antti Salovaara, Sacha Helfenstein, and Antti Oulasvirta. 2011. Everyday appropriations of information technology: A study of creative uses of digital cameras. J. Am. Soc. Inf. Sci. 62, 12 (December 2011), 2347--2363. Google ScholarDigital Library
- Christine Satchell and Paul Dourish. 2009. Beyond the User: Use and Non-use in HCI. In Proceedings of the 21st Annual Conference of the Australian Computer-Human Interaction Special Interest Group: Design: Open 24/7 (OZCHI '09). ACM, New York, NY, USA, 9--16. Google ScholarDigital Library
- Will Simm, Maria Angela Ferrario, Adrian Gradinar, Marcia Tavares Smith, Stephen Forshaw, Ian Smith, and Jon Whittle. 2016. Anxiety and Autism: Towards Personalized Digital Health. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). ACM, New York, NY, USA, 1270--1281. Google ScholarDigital Library
- Thor Jarle J. Skinstad and Babak A. Farshchian. 2016. Empowerment or Concealed Compliance?: A Review of Literature on Mobile ICT Solutions for Patient Empowerment. In Proceedings of the 9th ACM International Conference on PErvasive Technologies Related to Assistive Environments (PETRA '16). ACM, New York, NY, USA, Article 54, 4 pages. Google ScholarDigital Library
- Melanie Swan. 2009. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int J Environ Res Public Health 6, 2 (2009), 492--525.Google ScholarCross Ref
- Melanie Swan. 2012. Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the Participatory Biocitizen. J Pers Med 2, 3 (September 2012), 93--118.Google ScholarCross Ref
- Melanie Swan. 2013. The Quantified Self: Fundamental Disruption in Big Data Science and Biological Discovery. Big Data 1, 2 (June 2013), 85--99.Google ScholarCross Ref
- Bert Vandenberghe, Jasper Vanhoof, Fabienne Dobbels, David Geerts. 2015. Rome Wasn't Reached in a Day: How to Motivate Patients to Keep Walking? In INTERACT 2015 Adjunct Proceedings. University of Bamberg Press, Bamberg, Germany. 399--403Google Scholar
Index Terms
- The 'Self' as Barrier for Self-Management Technologies in Healthcare?
Recommendations
Human Agency in Self-Management Tools
PervasiveHealth'19: Proceedings of the 13th EAI International Conference on Pervasive Computing Technologies for HealthcareSelf-management tools are increasingly used to empower patients with chronic conditions to monitor their condition and treatment. As these tools put responsibility with patients, it is important to better understand how patients adopt these tools and ...
Self-tracking for Mental Wellness: Understanding Expert Perspectives and Student Experiences
CHI '17: Proceedings of the 2017 CHI Conference on Human Factors in Computing SystemsPrevious research suggests an important role for self-tracking in promoting mental wellness. Recent studies with college student populations have examined the feasibility of collecting everyday mood, activity, and social data. However, these studies do ...
Self-Care Technologies in HCI: Trends, Tensions, and Opportunities
Many studies show that self-care technologies can support patients with chronic conditions and their carers in understanding the ill body and increasing control of their condition. However, many of these studies have largely privileged a medical ...
Comments