Patient Innovation: An Analysis of Patients' Designs of Digital Technology Support for Everyday Living with Diabetes

Abstract

The aim of this paper is to identify characteristics of patients' contributions to innovation in health information technology (HIT). The paper outlines a theoretical definition of patient innovation and presents an analysis of four digital prototypes and 22 low-fidelity mock-ups designed by people affected by the chronic illness diabetes mellitus. Seventeen families (a total of 60 people) with one or more diabetic family members participated in design activities in a four-year research project focused on the design of digital support for everyday living with diabetes. Our analysis documented the originality of the analysed patient designs and identified three characteristics of patients' designs: socio-technical networks, objects with associated personal meanings and technology supporting the expression of identity. The paper concludes that patient innovation is defined by what is perceived as new by patients and/or others within the social system of adaptation. The analysed patient designs are original (as distinct from replications of or improvements on known products), and their characteristics are innovative contributions to the social system of everyday living with diabetes (i.e. they are perceived as new to the patients in the research study). The results of the analysis contribute to the credentials of patients as key actors in HIT innovation and call for participatory approaches in health informatics.

Keywords

Community-based Participatory Research Patient Participation Inventions Health Information Technology Diabetes Mellitus Patients Family Access to Information Consumer Participation Chronic Disease

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References

Andersen

(2010). The participatory patient. In: Proceedings of the 11th Biennial Participatory Design Conference. ACM: 151–154.

Arnstein

S.R.

(1969). A ladder of citizen participation. Journal of the American Institute of Planners 35(4): 216–224.

Bannon

(1991). From human factors to human actors: The role of psychology and human-computer interaction studies in system design. In: Design at work: Cooperative design of computer systems. Greenbaum

Kyng

(Eds) Lawrence Earlbaum Associates: 25–44.

Bansler

(1989). Systems development research in Scandinavia: Three theoretical schools. Scandinavian Journal of Information Systems 1(9): 3–20.

Bélanger

Bartlett

Dawes

Rodríguez

Hasson-Gidoni

(2012). Examining the evidence of the impact of health information technology in primary care: An argument for participatory research with health professionals and patients. International Journal of Medical Informatics 81(10): 654–661.

Björgvinsson

Ehn

Hillgren

P.A.

(2012). Agonistic participatory design: working with marginalised social movements. CoDesign 8(2–3): 127–144.

Bratteteig

Wagner

(2012). Disentangling power and decision-making in participatory design. In PCD′12. Proceedings of the 12th Participatory Design Conference: Research Papers, vol. 1, ACM: 41–50.

Buur

Matthews

(2008). Participatory innovation. International Journal of Innovation Management 12(3): 255–273.

Bødker

Iversen

O.S.

(2002). Staging a professional participatory design practice: Moving PD beyond the initial fascination of user involvement. NordiCHI′02. Proceedings of the Second Nordic Conference on Human-Computer Interaction, ACM: 11–18.

10.

Csikszentmihalyi

(1995). Design and order in everyday life. In: The idea of design – a design issues reader. The MIT Press. Margolin

Buchanan

(Eds): 118–126.

11.

Essén

Östlund

(2012). Laggards as innovators? Old users as designers of new services and service systems. International Journal of Design 5(3): 89–98.

12.

Glasemann

Kanstrup

A.M.

Ryberg

(2010). Making chocolate-covered broccoli: Designing a mobile learning game about food for young people with diabetes. DIS′10. Proceedings of the 8th ACM Conference on Designing Interactive Systems, ACM: 262–271.

13.

Greenbaum

Kyng

(Eds.) (1991). Design at work: Cooperative design of computer systems. Lawrence Erlbaum Associates.

14.

Kanstrup

A.M.

(2012). A small matter of design: An analysis of end users as designers. PDC′12. Proceedings of the 12th Participatory Design Conference: Research Papers, vol. 1. ACM: 109–118.

15.

Kanstrup

A.M.

Bertelsen

(2011). User innovation management – a handbook, Aalborg University Press.

16.

Kanstrup

A.M.

Bjerge

Kristensen

(2010). A living laboratory: Exploring mobile support for everyday life with diabetes. wireless Personal Communications 53(3): 395–408.

17.

Kanstrup

A.M.

Bertelsen

Glasemann

Boye

(2008). Design for more – an ambient perspective to diabetes. PDC ′08. Proceedings of the Tenth Anniversary Conference on Participatory Design, ACM: 118–127.

18.

Krippendorf

(1995). On the essential contexts of artefacts or on the proposition that ‘design is making sense (of things)’. In: Margolin

Buchanan

(Eds) The idea of design – a design issues reader. The MIT Press: 156–184.

19.

Lettl

Herstatt

Gemuenden

(2006). Users' contributions to radical innovation: Evidence from four cases in the field of medical equipment technology. R&D Management 36(3): 251–272.

20.

Lindsey

(1996). Health within illness: Experiences of chronically ill/disabled people. Journal of Advanced Nursing 24(3): 465–472.

21.

Lindsay

Jackson

Schofield

Oliver

(2012). Engaging older people using participatory design CHI 2012, ACM: 1199–1208.

22.

Nøhr

Bertelsen

Kanstrup

A.M.

(2009). Breaking barriers to self-management of chronic disease: The MaXi Project. In: Advances in Information Technology and Communication in Health. McDaniel

J.G.

(Ed.). IOS Press: 264–269.

23.

Oudshoorn

(2008). Diagnosis at a distance: The invisible work of patients and healthcare professionals in cardiac telemonitoring technology. Sociology of Health & Illness 30(2): 272–288.

24.

Prior

(2010). HCI methods for including adults with disabilities in the design of CHAMPION. In: CHI 2010, Doctoral Consortium, ACM: 2891–2894.

25.

Pullin

(2009). Design meets disability. Cambridge, Massachusetts, The MIT Press.

26.

Rogers

E.M.

(1995). Diffusion of innovations (fourth edition). Free Press.

27.

Skeels

Unruh

KT.

Powell

Pratt

(2010). Catalyzing social support for breast cancer patients. CHI 2010, ACM: 173–182.

28.

van der Velden

El Emam

(2013). ‘Not all my friends need to know’: A qualitative study of teenage patients, privacy, and social media. Journal of the American Medical Informatics Association 20(1): 16–24.

29.

van der Velden

Machniak

(2014). Colourful privacy: Designing visible privacy settings with teenage hospital patients. ACHI 2014. Proceedings of the Seventh International Conference on Advances in Computer-Human Interactions: 60–65.

30.

von Hippel

(1998). The sources of innovation. Oxford University Press.

31.

von Hippel

(2005). Democratizing innovation. MIT Press.

32.

Wärnestål

Nygren

(2013). Building an experience framework for a digital peer support service for children surviving from cancer. IDC′13. Proceedings of the 12th International Conference on Interaction Design and Children, ACM: 269–272.

33.

Richards

Baecker

(2004). Participatory design with individuals who have amnesia. PDC′04. Proceedings of the Participatory Design Conference: 214–223.