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A Manifesto for Epistemological Empowerment in Chronic Disease Self Care

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Abstract

In this chapter, I discuss the idea of patient empowerment in the context of chronic disease care. I discuss the concepts of knowledge, power, and action in relation to self care practices, and I introduce the notion of epistemological empowerment as a means of rethinking chronic care and, more generally, our healthcare systems.

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Notes

  1. 1.

    See Storni and Bannon (2011) for a more systematic discussion of the assumptions of the medical model and the need for new ways of thinking and talking about patients and their care, especially in relation to chronic disease.

  2. 2.

    Such epistemological heterogeneity should not be mistaken with relativism but rather as an attempt to bring about what Latour calls multinaturalism (Latour 2004; 2011; Stengers 2010).

  3. 3.

    This initial adjustment period is further complicated as a result of a patient’s remaining endogenous insulin working additively with injected insulin and causing low blood sugar levels (hypoglycemia). This is referred to as the honeymoon period and it varies from one patient to another. As endogenous insulin gradually reduces, high blood sugar levels can occur (hyperglycemia).

  4. 4.

    To address these issues, we developed an open-ended platform supporting the personalization of self-care practices. The platform, called Tag-it-Yourself, is discussed in O’Murchu and Sigfridsson (2010) and Storni (2011, 2012, 2013a, b, c, 2014). Its design philosophy is covered in Storni (2011) under the label of cosmopolitical design, and in Storni (2013c), under the label of ‘design for future uses’.

  5. 5.

    To some extent, this is already a reality on websites like (URLs, June 10, 2014) http://patientslikeme.com (Wicks et al. 2010) and www.cure-together.com or the more recent www.crowdmed.com.

  6. 6.

    In their paper promoting the need for participatory medicine, Utley-Smith et al. (2009) also noted: “Quasi-experimental trials and qualitative mixed-methods studies have been used with increasing sophistication in supplementing or supplanting designs that leave too many questions of the interactions between causality and context unanswered.” To some extent, this is already a reality on websites like (URLs, June 10, 2014) http://patientslikeme.com and www.cure-together.com or the most recent www.crowdmed.com.

References

  • Agre P (1994) From high tech to human tech: empowerment, measurement, and social studies of computing. Comput Support Coop Work 3(2):167–195

    Article  Google Scholar 

  • Andersen T (2010) The participatory patient. In: Proceedings of the 11th biennial participatory design conference

    Google Scholar 

  • Ballegaard SA, Hansen TR, Kyng M (2008) Health care in everyday life: designing healthcare services for daily life. In: Proceedings of CHI’08, pp 1807–1816

    Google Scholar 

  • Barbot J (2006) How to build an ‘active’ patient. Soc Sci Med 3:538–551

    Article  Google Scholar 

  • Barlow J, Wright C, Sheasby J et al (2002) Self-management approaches for people with chronic conditions: a review. Patient Educ Couns 48:177–187

    Article  Google Scholar 

  • Berg M (1997) Rationalizing medical work: decision-support techniques and medical practices. MIT Press, Cambridge

    Google Scholar 

  • Bodenheimer T, Lorig K, Holman H et al (2002) Patient self-management of chronic disease in primary care. JAMA 288(19):2469–2475

    Article  Google Scholar 

  • Bratteteig T, Wagner I (2013) Moving healthcare to the home: the work to make homecare work. In: Proceedings of ECSCW conference

    Google Scholar 

  • Brown P, McCormick S, Mayer B et al (2006) ‘A Lab of Our Own’ environmental causation of breast cancer and challenges to the dominant epidemiological paradigm. Sci Technol Human Values 31(5):499–536

    Article  Google Scholar 

  • Conrad P (1985) The meaning of medications: another look at compliance. Soc Sci Med 20:29–37

    Article  Google Scholar 

  • Conrad P (2008) The medicalization of society: on the transformation of human conditions into treatable disorders. JHU Press, Baltimore

    Google Scholar 

  • Danhold P, Piras E, Storni C, Zanutto A (2013) Exploring the patient 2.0: agencies, technologies and discourses in new health care practices. Sci Technol Stud 26(2):3–13

    Google Scholar 

  • Davison C, Davey-Smith G, Frankel S (1991) Lay epidemiology and the prevention paradox. Sociol Health Illn 13:1–19

    Article  Google Scholar 

  • Delfanti A (2013) Biohackers: the politics of open science. Pluto Press, London

    Google Scholar 

  • De Swaan A (1988) In care of the state: health care, education and welfare in europe and the usa in the modern era. Oxford University Press/Polity Press, Cambridge

    Google Scholar 

  • Donovan JL, Blake DR (1992) Patient non-compliance: deviance or reasoned decision-making? Soc Sci Med 34:507–513

    Article  Google Scholar 

  • Dyson E (2009) Why participatory medicine? J Particip Med 1(1). http://www.jopm.org/opinion/editorials/2009/10/21/why-participatory-medicine. Accessed 10 June 2014

  • Edgar A (2005) The expert patient. Illness as practice. Med Health Care Philos 8:165–171

    Article  Google Scholar 

  • Epstein S (1995) The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Sci Technol Human Values 20:408–437

    Article  Google Scholar 

  • Eysenbach G (2008) Medicine 2.0: social networking, collaboration, participation, apomediation, and openness. J Med Internet Res 10(3). http://www.jmir.org/2008/3/e22/. Accessed 10 June 2014

  • Foucault M (1973) The birth of the clinic. Tavistock, London

    Google Scholar 

  • Fox NJ, Ward KJ, O’Rourke AJ (2005) The ‘expert patient’: empowerment or medical dominance? The case of weight loss, pharmaceutical drugs and the internet. Soc Sci Med 60:1299–1309

    Article  Google Scholar 

  • Frydman GJ (2009) Patient-driven research: rich opportunities and real risks. J Med Internet Res 1(1). http://www.jopm.org/index.php/jpm/article/view/28/18. Accessed 10 June 2014

  • Greenhalgh P (2009) Patient and public involvement in chronic illness: beyond the expert patient. Br Med J 338:629–631

    Google Scholar 

  • Hartsock N (1998) The feminist standpoint revisited and other essays. Westview Press, Boulder

    Google Scholar 

  • Henwood F, Wyatt S, Hart A et al (2003) Ignorance is bliss sometimes: constraints on the emergence of the ‘informed patient’ in the changing landscapes of health information. Sociol Health Illn 25:589–607

    Article  Google Scholar 

  • 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). http://www.jmir.org/2008/3/e23/. Accessed 10 June 2014

  • Kanstrup AM, Bertelsen P, Glasemann M et al (2006) Design for more: an ambient perspective on diabetes. In: Proceedings of participatory design conference

    Google Scholar 

  • Kivits J (2004) Researching the ‘informed patient’: the case of online health information seekers. Inf Commun Soc 7(4):510–530

    Article  Google Scholar 

  • Latour B (2004) Politics of nature. Harvard University Press, Cambridge

    Google Scholar 

  • Latour B (2011) From multiculturalism to multinaturalism: what rules of method for the new socio-scientific experiments? Nat Cult 6(1):1–17

    Article  MathSciNet  Google Scholar 

  • Ledford H (2010) Life hackers. Nature 467:650–652

    Article  Google Scholar 

  • Lupton D (1997) Consumerism, reflexivity and the medical encounter. Soc Sci Med 24(3):373–381

    Article  Google Scholar 

  • 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):577–596

    Article  Google Scholar 

  • Mamykina L, Mynatt E, Kaufman D (2008) MAHI: investigation of social scaffolding for reflective thinking in diabetes management. In: Proceedings of the 26th annual SIGCHI 30

    Google Scholar 

  • Mamykina L, Mynatt E, Kaufman D (2006) Investigating health management practices of individual with diabetes. In: Proceedings of CHI’2006

    Google Scholar 

  • Mendez CL, Coccou F, Maturana H (1988) The bringing forth of pathology. Ir J Psychol 9(1):144–172

    Article  Google Scholar 

  • Mol A (2008) The logic of care, health and the problem of patient choice. Routledge, New York

    Google Scholar 

  • Morgan M, Watkins CJ (1988) Managing hypertension: beliefs and responses to medication among cultural groups. Sociol Health Illn 10(4):561–578

    Article  Google Scholar 

  • Nicolini D (2006) The work to make telemedicine work: a social and articulative view. Soc Sci Med 62:2754–2767

    Article  Google Scholar 

  • O’Murchu N, Sigfridsson A (2010) Tag it yourself. In: Proceedings of designing interactive systems

    Google Scholar 

  • Oudshoorn N (2008) Diagnosis at a distance: the invisible work of patients and healthcare professionals in cardiac telemonitoring technology. Sociol Health Illn 30:272–288

    Article  Google Scholar 

  • Palen L, Aalokke S (2006) Of pill boxes and piano benches: ‘Home-made’ methods for managing medication. In: Proceedings of computer support cooperative work, pp 79–88

    Google Scholar 

  • Pols J (2013) Knowing patients: turning patient knowledge into science. Sci Technol Human Values 39:73–97

    Article  Google Scholar 

  • Prior L (2003) Belief, knowledge and expertise: the emergence of the lay expert in medical sociology. Sociol Health Illn 25:41–57

    Article  Google Scholar 

  • Rabeharisoa V, Callon M (2002) The involvement of patients’associations in research. Int Soc Sci J 54(171):57–63

    Article  Google Scholar 

  • Stengers I (2010) Cosmopolitics I. Trans Bononno R. University of Minnesota Press, Minneapolis

    Google Scholar 

  • Storni C (2010a) 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):537–561

    Google Scholar 

  • Storni C (2010b) Report on the reassembling health workshop: exploring the role of the internet of things. J Particip Med 2. http://www.jopm.org/media-watch/conferences/2010/09/29/report-on-the-reassembling-health-workshop-exploring-the-role-of-the-internet-of-things/. Accessed 10 June 2014

  • Storni C (2011) Complexity in an uncertain and cosmopolitan world. Rethinking personal health technology in diabetes with the Tag-it-Yourself. Ir J Psychol 9:165–185

    Google Scholar 

  • Storni C (2013a) Patients’ lay expertise in chronic self-care: a case study in type 1 diabetes. J Health Expect. http://onlinelibrary.wiley.com/doi/10.1111/hex.12124/full. Accessed 10 June 2014

  • Storni C (2013b) Design challenges for ubiquitous and personal computing in chronic care and patient empowerment: a case study re-thinking diabetes self-monitoring. J Ubiquitous Pers Comput 18(5):1277–1290

    Article  Google Scholar 

  • Storni C (2013c) Design for future uses: pluralism, fetishism and ignorance. In: Proceedings of the Nordes design research conference

    Google Scholar 

  • Storni C (2014/In Press) Diabetes self-care in-the-wild: design challenges for Personal Health Record systems and self-monitoring technologies. In: Gherardi S, Kensing F, Osterlung C (eds) Personal health records: empowering patient through information systems? Special issue in information technology and people

    Google Scholar 

  • Storni C, Bannon L (2011) Towards the design of truly patient-centered healthcare infrastructures: a socio-technical approach to self care. In: Chilamkurti N (ed) Health informatics: an adaptive communication technology for future healthcare. Nova Science Publishers, New York

    Google Scholar 

  • Turner BS (1987) Medical power and social knowledge. Sage, London

    Google Scholar 

  • Utley-Smith Q, Colo´n-Emeric CS, Lekan-Rutledge D et al (2009) Nature of staff—family interactions in nursing homes: staff perceptions. J Aging Stud 23(3):168–177

    Google Scholar 

  • Wagner E, Groves T (2002) Care for chronic diseases. Br Med J 325:913–914

    Article  Google Scholar 

  • Wicks P, Massagli M, Frost J et al (2010) Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res 12(2). http://www.jmir.org/2010/2/e19. Accessed 10 June 2014

  • Wilson PM, Kendall S, Brooks F (2007) The expert patients programme: a paradox of patient empowerment and medical dominance. Health Soc Care Community 15:426–438

    Article  Google Scholar 

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Authors and Affiliations

  1. Interaction Design Centre, Department of Computer Science and Information Systems, University of Limerick, Limerick, Ireland

    Cristiano Storni

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  1. Cristiano Storni
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Correspondence to Cristiano Storni .

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  1. CALHISTE Laboratory, University of Valenciennes and Hainaut-Cambresis, Valenciennes, France

    David Bihanic

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Storni, C. (2015). A Manifesto for Epistemological Empowerment in Chronic Disease Self Care. In: Bihanic, D. (eds) Empowering Users through Design. Springer, Cham. https://doi.org/10.1007/978-3-319-13018-7_15

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  • DOI: https://doi.org/10.1007/978-3-319-13018-7_15

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