‘…The vital self-technologies constitute essentially specific types of research and medical devices which are consumer goods belonging to an emerging product sector, designed especially to be used in the private sphere, like the home, or to be carried on the body, in order that the individual consumer can maintain, cure, enhance, or transform his or her physical or psychic being...’
‘…Although it may appear paradoxical, this remark constitutes an ongoing limitative aspect of design thought in the area still related with hospital services - health care delivery at home by the hospitals or private clinics - and are not considered instruments with the potential to be used as consumer goods without the assistance of professionals (nurses, or other specially trained hospital personnel)…’ […] ‘…field research by biomedical engineers on this subject gives the impression that the study of the lay user's environment in the field most neglected by manufacturers…’
Orel, T. (1995) Designing self-diagnostic devices, Buchanan and Margolin (eds.) Discovering Design, The university of Chicago Press, Chicago
There is a growing appreciation of human insight and sense making in the field of Information Visualization. At the same time, many health-monitoring applications continue to rely on a naive assumption that once the data is collected and presented to the individuals, they will draw appropriate inferences unproblematically.
Mamykina, L. et al. (2006) Investigating Health Management Practices of Individuals with Diabetes, Proceedings of CHI 2006, Montreal, Quebec
‘A claim for objective knowledge is an absolute demand for obedience.’
Mendez, CL., Coddou, F., Maturana, H.: The bringing forth of pathology The Insh Journal of Psychology 9(1), 144-172 (1988)
‘Some years ago the sociologist and pollster Daniel Yankelovich described a process he called the McNamara fallacy, after the Secretary of Defense who had so carefully quantified the Vietnam War. 'The first step,' he said, 'is to measure what can easily be measured. The second is to disregard what can't be measured, or give it an arbitrary quantitative value. This is artificial and misleading. The third step is to presume that what can't be measured easily isn't very important. This is blindness. The fourth step is to say that what can't be easily measured really doesn't exist. This is suicide.'
Smith, A. (1981) ‘Paper Money’, (George J.W. Goodman), p. 37
‘Not everything that counts can be counted and not everything that can be counted counts!
Albert Einstein
‘Those who suffer from chronic illnesses, particularly ones that doctors can do little about, develop a special kind of knowledge of their condition. This knowledge is of a rather different order from that hold by doctors, and from the point of view of the patient, it is subtly superior'
Macintyre, Sally and Oldman, David (1977) Coping with migraine. In Davis, A. and Horobin, G. (eds) Medical encounters: the experience of illness and treatment, London: Croom Helm
‘…Accurate knowledge must derive from affected communities. […] Knowledge from affected groups is not merely another voice in a relativistic world. Instead knowledge is a counter-hegemonic force introduced by those who are usually excluded from science.
Hartsock, Nancy, CM. (1998) The feminist standpoint revisited and other essays, Perseus Publishing
‘At the core of modern medical practice is the Cartesian revelation: the living body can be treated as essentially no different from a machine. [...] Insofar as the body is modelled upon a lifeless machine, the role of subjective experience in determining one’s health history will tend to be overlooked’
Leder, D. (1992) A tale of two bodies: The Cartesian corpse and the lived body D. Leder (ed), The Body in Medical Thought and Practice. Amsterdam, Kluwer Academic Publishers
‘As machines provided the precision and new tests proliferated, data rather than the patient claimed the physician’s attention. Diagnosis rather than treatment became the focus of interest in this newly emergent milieu.’
Borell, M. (1993) Training the senses, training the mind, Bynum, W.F., Porter, R. (eds) Medicine and the five senses. Cambridge, UK: Cambridge University Press, pp 244-261.
‘The use of such registration techniques, and later electrical instruments which extended them, bound medicine more firmly to the physical sciences, linking medical research to a variety of commercial opportunities associated with chemical and electrical technology. [...].
Reiser, S. J. (1993) Technology and the use of the senses in twentieth-centur medicine. Bynum,W.F. and Porter, R. (eds), Medicine and the five senses Cambridge: Cambridge University Press, pp. 262-273.
‘The implication here is that the person must take his or her illness and cope with it in his or her own life, removed from the attentions of medical personnel. Where acute illness can be discussed from the perspective of the doctor (that is, from the standpoint of biomedicine), the special problems of living with chronic illness evade these kinds of explanations.’
Radley, A. (1994) Making Sense of Illness: The Social Psychology of Health and Disease. London, UK: Sage Publications, Ltd
‘Such practitioner behaviour emanates from professionals’ belief that they know best and that objective evidence, such as physiological indicators or measures of functional integrity are the only way to determine a person’s health status’
Molzahn, Anita E. (1991) Quality of life after organ transplantation, Journal of advanced nursing, vol. 16, no. 9, pp. 1042-7
‘Only biological aspects of illness are ‘real’ and only biological treatments are ‘hard’ enough to produce biological change’.
Kleinman, A. (1988) The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books
‘Normative judgments are at play throughout the life cycle of decision technology development and use. References to scientific notions of truth and validity in the knowledge translation/evidence-based medicine model tend to overlook the socio–political dimension of decision technology development and implementation, as well as the contested nature of what ‘‘good decision’’ these technologies aim to support.’
Boivin, A. et al. (2008) Decision technologies as normative instruments: exposing the values within, in Patient education and counseling, 73, 426-30
'the whole notion of compliance suggest a medically-centered orientation; how and why people follow or deviate from doctor orders. It is a concept developed from the doctor's perspective and conceived to solve the provider defined problem of 'noncompliance'. The assumption is the doctor gives the orders; patients are expected to comply. It is based on a consensual model of doctor-patient relations where noncompliance is deemed a form of deviance in need of explanation. […] Yet from the patient's perspective the issue is not about complying or not complying. Imbedded in the context of their own experience, their use of medications can better be seen as a form of 'self-regulation.’ […] Most people with chronic illnesses spend only a tiny fraction of their lives in the ‘patient role. Compliance assumes that the doctor-patient relationship is pivotal for subsequent action, which may not be the case.’
Conrad, Peter (1985) The Meaning of Medications: Another Look at Compliance. Social Science and Medicine, vol. 20, pp. 29-37
…’changing the terminology from compliance to adherence or to any other term will not resolve this dilemma. The resolution lies in the recognition that as healthcare professionals we have been socialized to a set of needs, beliefs, and methods that may work reasonably well in the treatment of acute illness but are fundamentally unworkable in diabetes care.’ … ‘what we are suggesting is that we need a new conceptual framework for self-management behaviour of patient and our role and relationship with patients’.
Anderson, Robert M. and Funnell, Martha M., (2000) Compliance and Adherence are Dysfunctional Concepts in Diabetes Care, The Diabetes Educator, 26; 597
‘This clinical reality to be foregrounded, is a cluster of elements that far too often are kept separate in research: bodily parameters, such as blood sugar level; social tasks (or desires, or obligations), such as driving a car or taking care of children; technological tools, such as blood sugar measurement machines and the intricacies of using and adapting them; and hopes and fears with which the people concerned, patients and professionals, live.’
In this context, then, evidence may serve a function. But not always and everywhere. This is what I would like to suggest: that not all health care research should be structured as if it were meant to convince outsiders of the quality of existing care. Research might just as well, or at least also, be structured as a form of self-reflection. However, as soon as one engages in self-reflection, being pleased with oneself is not all that interesting.
But I suggest that the way professionals in day-to-day care practices engage in doctoring and nursing, in tinkering with and in calibrating care, deserves some back-up. It deserves to be strengthened. Thus, I suggest that there should be a genre of research that seeks to contribute to clinical work. The point of such research would not be proving practices right—or wrong. The more interesting and appropriate thing to do is to try to contribute to improving them.
Mol, A. (2006) Proving or Improving: On health care research as a form of self-reflection, Qualitative Health Research, 16, 405
‘Doctors and other health professionals act as gatekeepers to treatments, services and, in some instances, social benefits. Indeed this is a significant aspect of the ‘sick role’ that maintains the dependence of patients on doctors. What remains uncertain is whether the use of the Internet by consumers will increase pressure to improve the quality of health services and promote patient centred medical practice, or encourage professional and organizational closure in the face of challenges to the status quo.’
Hardey, M. (2001) E-Health: the internet and the transformation of patients into consumer and producers of Health Knowledge, in Information, communication and society, 4(3): 388-405
As consumers have demanded and obtained more choices, they have inherited the burden of coordinating their own care. Often patients are the only ones who know their complete history and set of problems, so they are the only ones qualified to manage the big picture […] Patients may order prescription drugs from a pharmacy, receive herbal remedies from an alternative practitioner, buy nutraceuticals from a health food store and purchase over-thecounter medications from a drugstore. So no one, except the patient, knows everything that he or she is taking. It's up to the patient, then, to ensure that mixing these substances won't cause adverse side effects. The same is true when patients are hospitalized. As health plans mandate the use of hospitalists for inpatient care, the primary care physician — who knows the patient's history, allergies to medications, even personality quirks — may be absent. So the burden again is on the patient to inform all caregivers of these particulars.
MacStravic, S. (2000) The downside of patient empowerment, Health Forum Journal, 43, 1
‘Under conditions of modernity, lay people took advice from experts. But now, the more science and technology intrude into our lives, the more people question them. Thus, lay views of science and expert knowledge more generally are changing. Scientists have, of course, always changed their ideas and disagreed with each other but that was not how lay people viewed it. Now, so-called expert or scientific knowledge is increasingly under scrutiny.’
Nettleton and Burrows (2002) E-Scaped Medicine, Information, Reflexivity and Health, in Critical social policy, 23: 165
Today, there is a need for ‘technologies of humility’ to complement the predictive approaches: to make apparent the possibility of unforeseen consequences; to make explicit the normative that lurks within the technical; and to acknowledge from the start the need for plural viewpoints and collective learning […] The time is ripe for seriously re-evaluating existing models and approaches. How have existing institutions conceptualized the roles of technical experts, decision-makers, and citizens with respect to the uses of applications of knowledge? […] technology of Humility is opposed to that of hubris inspired by the positivistic myth of progress, control and predictability. Technology of humility is instead constituted by methods, or better yet institutionalized habits of thought, that try to come to grips with the ragged fringes of human understanding – the unknown, the uncertain, the ambiguous, and the uncontrollable. Acknowledging the limits of prediction and control, technologies of humility confront ‘head-on’ the normative implications of our lack of perfect foresight [pg. 227]
Jasanoff, S.(2003) Technology of Humility, in Minerva, 41, 223-244
‘Caring is a matter of doctoring: of tinkering with bodies, technologies and knowledge - and with people too. ‘
‘…it fits with the logic of care to attend frictions and problems. To acknowledge that some things do not work well, no matter how well intended they may be. This suggests an entirely different accountability practice. Not the one in which everyone has to say how wonderful they are, but one in which people feel safe enough to examine what in their practices tends to go wrong and why. This can be done in various collectives: with people who share the same expertise; or with people involved in the same ward, from professionals to cleaners; on the level of a hospital, a neighborhood, or a nation; among professionals; among patients; among all the people caring (whether as professional or as patient) for the same disease, and so on...’
‘Care is a process: it does not have clear boundaries. It is open-ended. Care is not a transaction in which something is exchanged (a product against a price); but an interaction in which the action goes back and forth. In the logic of care, by contrast, care is an iterative, open-ended process that might be shaped and reshaped depending on its results.’
‘Good care aimed at collectives tinkers with the conditions in which these collectives live. A team that shares the task of doctoring offers an interesting model for the democratization of expertise. ... The Logic of Choice assumes that we are separate individual who form a collective when we are added together. In the logic of care by contrast, we do not start out as individual, but always belong to collective already - and not just a single one, but a lot of them.’
Mol, A. (2008) The logic of care and the problem of patient choice, Routledge, London
‘...the great divisions are outmoded...to start with we should accept the fact that the knowledge of specialists is not the only knowledge possible, and consequently we should recognize the richness and relevance of knowledge develped by laypersons…’
‘both categories of actors possess specific forms of knowledge (a capacity of diagnosis, an interpretation of the facts, a range of solutions) that mutually enrich each other’
‘In hybrid forums, in which the directions given to research and the modes of application of its results are discussed, uncertainties predominate, and everyone contributes information and knowledge that enrich the discussion.’
‘...by absorbing the uncertainties that it puts at the center of debate, dialogic democracy enrich traditional representative democracy, which we propose to call delegative democracy ‘
Callon, Michael, Lascoumes, Paul, Barthe, Yanic. (2009) Acting in an Uncertain
World: An Essay on Technical Democracy, Cambridge, MIT press
