Innovative Health Technologies - Andrew Webster

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Andrew Webster

Innovative Health Technologies andthe Social: Redening Health,Medicine and the Body

Introduction

I would like to begin with a story of what we might call an ‘uncertainty-state-ment’ from a major genomics rm. It came in a press release announcing theanticipated scientic and product development that a new line of inquirymight create: ‘Except for the historical information contained herein, thematters set forth [here] are forward looking statements . . . [that] are subjectto risks and uncertainties that may cause actual papers to differ materially’(cited in Rajan, 2000). As a metaphor for both the promise and uncertaintyassociated with the implications of innovative health technologies (IHTs),this disclaimer is perfect. Much of the promise of IHTs, such as in the eldsof genetics and informatics, depend on masking such uncertainty andmobilizing a range of claims about their future therapeutic impact.

The relationship between any new – however embryonic – health tech-nologies and those already established will depend on how they are receivedin the present and this in turn depends on whether they are regarded asmaking sense, and if they can be translated into the more everyday world of the technology user. It is perhaps worth noting that this is as true for thephysician as it is for the lay person. For example, an editorial comment in aBritish Medical Journal special issue on genetics noted:

As we watched the growing excitement and hype around the human genomeproject, we at the BMJ had a vision of the Oscar ceremonies. The scientists arein their tuxedos and sparkling dresses, slapping each other on the back, slurpingchampagne, and making extravagant, tearful speeches. Our readers are like thesilent army of cleaners waiting outside: once the scientists have moved on tothe next (postgenomic) party, they’ll come in and start cleaning. (BritishMedical Journal , 2001)

Current Sociology , May 2002, Vol. 50(3): xxx–xxx SAGE Publications(London, Thousand Oaks, CA and New Delhi)[0011–3921(200205)50:3;xxx–xxx;024761]

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Such remarks suggest that new health technologies may promise morethan is deliverable and make new demands on those who try to deliver them.The comments also imply that technologies are only really successful whenthey make sense within the existing social relations within which they are tofunction, suggesting the crucial role played by the translation and even re-invention of technologies into everyday contexts of use.

This articulation between technologies and the context of use throughwhich their meaning and utility are constructed is, of course, a key themewithin science and technology studies (STS) (see e.g. McLaughlin et al., 1998;Grint and Woolgar, 1997). It is one that has been developed in particularthrough an examination of medical knowledge and practice as they aremediated by new technologies (as in Berg and Mol, 1997; Casper and Berg,1995; May and Ellis, 2001), work that has brought STS and the sociology of health and medicine more closely together. Studies on the (re-)classicationof illnesses through a genetics discourse (Lippman, 1994; Kerr andCunningham-Burley, 2000), on organization and control within the clinicaldomain (Atkinson, 1995; Rabinow, 2000), or on the construction of alterna-tive futures for technologies (Nelis, 2000) document the contested, sociallyconstructed and variable ‘pathways’ of medical technologies.

The scope and richness of such studies reect the fact that medicine hasitself become more and more dependent on increasingly sophisticated tech-nologies that have been drawn from bioscience, engineering, informationtechnologies and elsewhere. The increasing reliance on such technologiesmarks what Pickstone (2000) has called a shift from ‘biographical medicine’

to ‘techno-medicine’. The latter has of course been driven by pharmaceuticaland medical devices industries and according to some represents a funda-mental shift from a public health social-hygienist framework for medical pro-vision, to one which has become increasingly obsessed with ‘miracletechnology’ – the creeping fetishization of technology, hardware andgadgetry (Knight, 1986; Blume, 2000).

Accompanying these studies, yet pointing to the paradoxes of a societyshaped by a more powerful yet ambiguous technoscience, have been thebroader theoretical debates over the arrival of the risk society (Beck et al.,1994; Lupton, 1999) and the dismantling of the cultural and political bases of expertise and trusted knowledge (Barnes, 1999). Not surprisingly, suchdeconstructionism has led to a focus on what many once called the ‘relativ-ity’ of knowledge, but now construe in terms of ‘uncertainty’, a notion thatseeks to combine both the epistemological contingency of relativism with asocial contingency that emphasizes the reexivity of knowledge and action.

Medical science is a site particularly laden with risk and uncertaintytoday. As a result, the long-standing sociological argument that society issubject to the power of ‘medicalization’ suddenly seems open to question, orat least overstates the degree of control that medicine currently enjoys

108 Current Sociology Vol. 50 No. 3




(Williams, 2001). Much medical sociology has, over the past two decades,offered us an account of the ever-increasing strength of the biomedical modelof illness and disease and the professional dominance that goes with it. Animportant contribution to this view of the biomedical model was made byearly feminist analyses of reproductive technologies, with some accountsoffering a rather deterministic reading of the intent and effects of such tech-nologies (e.g. Klein et al., 1991; Corea, 1985)1 Yet, while the biomedical modelhas indeed been powerful, the success of new technologies has been to createa situation where many more people than in the past, no longer on a ‘criticallist’, experience chronic illness. As Bury (2001) has noted, this increase inthose coping with chronic illness, coupled with (and in part generative of) agrowing ageing population, allied to increasingly expensive ‘high tech bio-medical care’ have shifted the focus of much medical intervention from ‘treat-ment and cure’ to ‘management and care’ (p. 267).

The other related area that we need to consider in reviewing our presentunderstanding of medical technology is that relating to work on the body(e.g. Turner, 1996; Nettleton and Watson, 1998; Hughes, 2000). Considerableemphasis here has been given to the power of ‘the medical gaze’ that hasmoved deeper and deeper into body structures – from surface anatomy,through X rays to intrabody physiology and now to genetics.

This model of the body draws on the disciplines of anatomy, physiologyand pathology not only to understand and classify the body but in doing soto determine the limits of normality and abnormality – and thus illness anddisease – which lead to medical intervention. This powerful medical gaze

occurs not only at the level of the individual but also at a public, collectivelevel by the regulation of bodies by the state and its health agencies, through,for example, national screening programmes for cancer or other disorders.But as Prior (2001) observes, the growing sophistication (though imaging andgenetic diagnostics) of such programmes means that the ‘boundaries of abnormality’ are being pushed back ‘to nd disease at earlier and earlierstages’ (p. 252).

As a result, medical technology has created patients without symptoms,the ‘worried well’, who occupy what we might call a therapeutic limbo,adding new forms of ambiguity and risk for both physicians and those subjectto their gaze. Consequently, these new forms of screening and classicationthat are to be found throughout most advanced health systems create a situ-ation where the control they engender may well be much less than some of the theoretical models of surveillance culture might suggest (Armstrong,1995).

These three areas of analysis – STS, theories of the risk society, and workon the sociology of the body – are increasingly linked in contemporaryempirical research that examines the way medical technologies shape and areshaped by society (see, for example, ESRC, 2001). One way in which we can

Webster: Health Technologies and the Social 109




weave a particularly powerful link between these contributions is throughasking whether they help us to answer the following question. Has medicaltechnology and health been dramatically transformed through the arrival of more complex sciences and techniques? Some might argue that medical tech-nologies today are simply the latest, most sophisticated version of what hasbeen a long-lasting development of the tools available in the clinical portfolio,the medical ‘bag’ (Porter, 1997). But work in STS in particular suggests thatcontemporary innovations are not simply extending the medical repertoireand the instruments available to it but are transforming it. In addition, theseinnovations are changing our understanding of health, illness and disease, soredening health, medicine and the body. How might this be the case?

Innovative Health Technologies and the Social

Contemporary technologies such as the ‘new genetics’, in vitro fertilization,telemedicine, Nuclear Magnetic Resonance (NMR) and other imaging tech-niques, therapeutic cloning, stem cell research, xenotransplantation and soon, are clearly all potentially powerful tools for the diagnosis, treatment andeven prevention of illness and disease, such as the genetics-based anti-viraltherapies used to treat HIV. But they are all technologies that have begun toredene the scale, scope and boundaries of the medical portfolio itself.

These technologies have not emerged from clinical practice or experi-mentation, as in the (heroic) past, but from molecular biology and bioinfor-

matics labs, and, as with much of the technology that surrounds us today,have enabled us to do more things. But, as Nowotny (2000) observes, this‘plethora of choices and decisions appears to promote a greater variety of experimental behaviour’ whose results are uncertain – not only in a techni-cal but also a wider cultural or ethical sense. This has been evident, forexample, in the controversy over proposals made by some (albeit only a few)scientists in 2001 to create human clones:2 such proposals have been seen todisturb and disrupt traditional reproductive boundaries and practice, andhave led to concerns that might be said to be echoed in the observation bythe German sociologist Nicklaus Luhmann, who once remarked that‘modern society is shocked by its risks’ (1993: 27).3

There are at least three ways in which recent research in STS might pointto qualitative shifts in the relation between health technologies and ‘thesocial’. In part these changes are due to material or technical characteristicsof the technologies themselves – such as the virtual domain of health infor-matics that can re-invent the boundaries of the body in space and time toenable distant diagnosis (as in telemedicine), or the domain of genetics thatcan both reduce the body to its basic biochemical constituents and recon-struct it in novel ways (as in so-called ‘designer babies’). However, this does







commercial advice has also created further opportunity for uncertainty andrisk. These developments in both genetics and informatics, dependent as theyare on ever-sophisticated socio-technologies, weaken the epistemological andprofessional authority of medical science and practice.

There are a number of consequences that result from these developments.First, as Rapp (1999) has argued, those patients who are caught up in high-tech medicine – and her work focuses on genetic testing in reproductivemedicine (such as pre-implantation genetics diagnosis) – nd themselves atthe precarious edge of medical innovation, where choices and decisions overmedical intervention are shot through with uncertainty. Such people, Rappdeclares, can be regarded as ‘moral pioneers’ and crucial to both the techni-cal and social process of medical innovation. Lay people have always beenimplicated in the medical innovation process through experimentation,clinical trials, and public health programmes; but the terms of engagementtoday in high-tech medicine demand much more of lay people as active participants in the mobilization of new technologies from their very earlieststages of development. This, I suggest, we might call the socialization of medical innovation .

In addition, the cultural (and spatio-temporal) extension of medicalknowledge and advice through globally available information sources heraldsthe arrival of the so-called ‘expert patient’, as well as the procuring of medicaladvice and products by people outside the specic regulatory and ethical pro-visions found within any one country. The Internet fosters not only a ‘newmedical pluralism’ (Cant and Sharma, 1999) but also what Giddens (1991) has

called the ‘reskilling’ of lay people in their engagement with, denition andmanagement of health and illness. Crucially, this ‘expert patient’ challengesthe power of the physician (Hardey, 1999) and so his or her professional auth-ority. Paralleling my earlier notion, this whole process might be regarded asthe socialization of clinical diagnosis.

Finally, the engagement with high-tech medicine can lead to a differentform of challenge to the biomedical model and professional power, namelythe emergence among lay groups of a counter-discourse or ‘counter-rhetoric’(Blume, 1997) against the way high-tech medicine is portrayed and pos-itioned in terms of how it denes the nature of the ‘problem’ to which it isaddressed, and the design of the clinical intervention that is its solution.Blume’s examination of the cochlear implant for the deaf illustrates the waysin which ‘Deaf activists working together with social scientists, historians andlinguists’ shared a view of deafness ‘at odds with the usual medical identi-cation of deafness with hearing loss’ (p. 51). This alternative discourse wasmobilized in such a way that those who seek to promote the implant havehad to be much more attentive to users’ own understanding of ‘how the tech-nology is to be deployed’ (p. 51). And, to complete the trio, this processmight be regarded as the socialization of clinical implementation.





The third sense in which we can say that contemporary health technolo-gies are qualitatively distinct from the past is that they deconstruct the physical body as the locus for health and illness. Recent work in the sociology of thebody (e.g. Turner, 1992; Crossley, 1996) has stressed the need to see socialaction, interaction and their meaning as crucially ‘embodied’, stressing thephysical and emotional framing of everyday life. While this work has beenvital in re-engaging sociology with a core dimension of lived experience thathad often been neglected in the past (see Frank, 1990), such work has alsostressed the socially constructed and fragile status of ‘the body’ per se. Thistheme is one that related work in STS suggests is particularly linked to thedevelopment of medical elds such as genetics and informatics. This work isshowing how the boundaries and very meaning of our bodies are changing –how we are reconguring our bodies and the relations we have towards eachother through both the new genetics (Franklin, 1997; Strathern, 1992) andinformatics. With regard to the latter, Virilio (1998) has claimed that todaywe are approaching a new (third) technological revolution – the rst wastransport related, the second what he calls ‘transmission’ related (i.e. con-cerned with radio, TV, the Internet), and the third now related to the‘miniaturization’ of objects (such as transplants/implants based on nano-technology): in this third wave we have to ‘cope with technology inhabitingus’ (p. 24).

Developments in genetics and informatics can be seen to redene theboundaries of the body while working to dematerialize the body – not onlyfor lay people but physicians too. The physical sense we have of the link

between person, body and health may well be disrupted by the advent of cybernetic medicine with supercomputers being used to produce models of in silicoorgans, organ systems and eventually the ‘Virtual Human’. Medicstoday are being trained through informatics to generate virtual bodies ratherthan being required to work on cadavers or volunteers. An example of thisin the UK is the PATSy system, supported by the Nufeld Foundation, func-tioning as ‘an Internet multimedia database that makes “virtual patients”available to students of neuroscience, clinical science, medicine and relatedelds’.4

These three dynamics – in regard to technology networks, the epistemo-logical and professional authority of technoscience, and the boundaries of thebody – are working together in such a way as to reafrm the power of the(bio-science) medical gaze while, simultaneously, knocking it out of focus.What are the implications of these developments for medical technoscience,especially in regard to the relationship between lay and practitioner?





Medicine as Information

There are a number of implications that current work in the sociology of science is just beginning to explore as a result of these developments. Oneway of examining these is in terms of medicine as ‘information’. The rapidspread of both genetics and health informatics within clinical science andmedicine, as well as their deployment for health management purposes (as inDNA registers, or in health information management systems such as theelectronic patient record [EPR]), suggest that the contemporary medicalportfolio is becoming increasingly ‘informaticized’. This is happening inthree ways.

First, medicine is taking on the language and practice of biology. As aresult, medicine takes on the character of an information science, sincebiology is itself becoming an information science, dependent on mapping andmanaging information at the level of the cell, protein and gene. The mostsought after recruits for today’s Biology departments are bioinformaticists(Brown et al., 1999). In short, the quarternary code of the genomic universe(the four molecules of CTAG 5) is increasingly dependent for its manipulationand utility on the binary code of the digital universe (11001 . . .).

The Human Genome Project, whose completion was announced lastyear,6 could not have been undertaken without massive computing capacityto store the biological information. Even the synthetic creation of DNA foranalysis through sequence-tagged sites no longer depends on access tooriginal biological material for complementary work to be undertaken across

the globe; it can all be done synthetically via a computer. As Hine (1998) hasobserved: ‘without [IT] all the accumulated knowledge [related to genomicresearch] would be a disorganised heap as unreadable as the genome itself’(p. 42).

This link between the biological and the informatic is also evident in thecommercial sector as seen in the increasing links between biotech and ITrms – such as Myriad Genetics with Oracle and Hitachi that together planto spend $500m to map human proteins by 2004 – such that the humangenome is superseded by a ‘human proteome’ project. The biological/infor-matic link is also evident in the vast literature now devoted to discussing theproblems of privacy, condentiality and security of genetic information (see,for example, Rothstein, 1998; Rizzo, 2000).

The second way that medicine is being informaticized is in terms of itsdelivery and management through telecare, telemedicine, and health infor-matics. In the UK, the NHS’s ‘information strategy’ is now being imple-mented and, as Mort et al. have observed, while

contemporary health policy is . . . optimistic about the potential for change . . .[it is] . . . equally explicit about the need for a technocratic agenda: in health





care, we nd this agenda located rmly at the centre of policy and practicearound ICTs (Information and Communication Technologies). (2001: 1)

A third sense in which medicine is being dened as ‘information’ is moreparadoxical. The increasing uncertainty associated with risk-laden diagnosesand clinical understanding is, ironically, encouraging those subject tomedicine to demand more precise (and ‘certain’) technical information as away of judging the merits of particular medical interventions, such as genetictests, specialist surgery, or the deployment of end-of-life technologies.According to Barnes (1999), this search for greater technical surety creates amajor problem for the maintenance of an expert/lay relation. The more webase this relationship on technical knowledge rather than trust, the more therelationship between the two begins to break down or, more precisely, thatquestions about our status as moral actors are redened in terms of questionsof a purely technical matter. Rather than ‘healers’, medics are becoming ‘tech-nologists of the body’. Ethical issues are redened as technical and so publiclyveriable matters – such as the decision to allow embryo research up to 14days before the appearance of the so-called ‘primitive streak’ (the point atwhich the embryo rst develops cells that go to make up the spinal nerve) orinformed consent forms that presume it is information rather than trust thatis at stake.

Barnes’s point is that the technical denition of what are essentially bothtechnical and moral issues subverts the trust we are prepared to put in expertswho are supposed to act as moral agents on our behalf too. As a result, weare more likely to either reject expert advice, or deem it simply to be one

based on technical competency which can be challenged. The arrival of the‘expert patient’ simply gives a further twist to the technical ratchet and, asBarnes says, ‘means that the demand for visible markers [justifying experts’decisions] is likely to grow and perversely for the technical expertise neededto identify them, precisely because of the narrow scope of the trust accordedto purely technical expertise’ (pp. 62–3). Loss of trust on both sides hasinevitably led to the massive legal industry that is now ‘defensive medicine’(e.g. Barach and Small, 2000).

Conclusion: Opening up the Black Bag . . .

From the discussion so far, it may appear that new innovative health tech-nologies have powerful, determining effects wherever and whenever they areintroduced. On the contrary, we must recognize that these technologies donot simply arrive in the health market – this has to be created, and cliniciansand patients, regulatory agencies and health authorities all have to see themas of value. They also vary in their effect by culture and country: wheredifferences in ethnicity, religion, gender and socialized vs private medicine





shape the reception and perceived value of the technologies. Moreover, at theeveryday level, there has always been – as the ‘transactional model’ suggests– negotiation between patients and medics over the meaning and utility of clinical intervention and techniques. What we can say is that the ways inwhich these technologies are dened, given meaning, and challenged by layactors is opening the medical ‘black bag’ and loosening rather than strength-ening the control the doctor has over items found within it.

A much greater provisionality to medical diagnosis appears, coupledwith a new emphasis on the negotiation of risk allocation between healthpractitioners, counsellors and those consulting them. This is related in turnto an increasing diversity of sites through which health information and treat-ment is accessed and an increasing range of new (non-clinical) sources pro-viding care. As a consequence, we are seeing the movement away from(private) professional self-regulation towards the reshaping of publiclyaccountable forms of clinical governance and debates over the meaning of ‘informed consent’ to treatment by a medical technology (Chadwick, 2001)which reect this more differentiated world of health delivery (Nettletonet al., 2001).

The increasing array of health information sources is no longer denedsimply in terms of the ‘expert/lay’ but also ‘agent/client – such as epitomizedby the ‘wellness manager’ found on many e-health pages. And the movetowards a national electronic health record (more ambitious in scope than theEPR) linking social services and health care will change the relationshipsbetween health delivery and the client. Telecare has, for example, enabled a

much faster rollout of patients from hospitals to their own homes where theirblood pressure, respiratory rate and images of healing wounds can be takenelectronically and downloaded to physicians. This saves on beds and expen-sive hospital care, and so, in the USA and increasingly the UK, is very attract-ive to insurance companies.

As suggested earlier in this paper, the increasing diagnostic power of medical technologies is occurring without a comparable increase in prognos-tic power of the physician: genetic diagnostics, neurophysiological investi-gation of the structure and function of the brain, scanning technologies,screening and testing, all generate vast libraries of information about newrisks without a complementary power of either prognosis or therapy. Thiswill inevitably generate new social, ethical and cultural problems for societyto resolve.

Such a resolution will require increasing reexivity on the part of thoseworking within health policy and state agencies charged with regulating thedevelopment of genetics and informatics. Indeed, in general terms, there hasbeen a welcome move towards such reexivity at the political level.

This turn to a more reexive science and technology policy has, however,two versions that are based on quite distinct notions of accountability and





grounded in quite distinct epistemologies. That is, reexivity has been rou-tinized in two different ways. First, by a turn towards, if not yet completeacceptance of, what Funtowitz and Ravetz (1993) call a ‘post-normal’ sciencewherein scientic agendas are set by a much wider (non-scientic) range of social actors, where facts become pliable and beyond the control of science,and where lay knowledge itself has to be not merely considered but built intodecision-making processes. There would still be some difculty within thepolicy sector accepting Funtowitz and Ravetz’s view that lay people havedifferent but equally valuable knowledge to that of experts, more that layknowledge and concerns have to be understood if science policy is to secureany sort of political legitimacy. A whole battery of what we might call reex-ivity tool-kits delivered by professional reexivists has been developed –from focus groups, through ‘hexagon mapping’, to consensus conferences.

The second way in which reexivity has been routinized is through themove towards what Lynch (2000) has called a ‘systemic reexivity’, wherebyin late modern society ‘ reexive monitoring takes the predominant form of cost–benet and risk–benet analysis’ (p. 31). In health policy we see thisexpressed through the increasing weight given to systematic review pro-cedures, ‘evidence-based’ medicine and practice, and other forms of assess-ment. This is clearly rooted in a conception of evidence, facts, and judgementthat is very much more in line with a Kuhnian ‘normal’ – rather than ‘post-normal’ – science. In acknowledging, even requiring, that medical science isapplied and meets its users’ needs, we are led to a reconrmation of its most‘externalist’ credentials and claims.

These two forms of self-conscious science pull in quite different direc-tions – one towards an accountability and epistemology based on pluralismand uncertainty, the other based on closure of choice (indeed, in some senseno choice since the preferred option speaks for itself) and certainty.

We have, however, pointed to various ways in which contemporarydevelopments in health technologies are, sui generis, generative of uncer-tainty and new risk. As Santos (2000) has argued, science ‘has acquired thepower to dene situations beyond what it knows about them’ (p. 47) pre-cisely because, as Morgan (2001) observes, they are socially and not merelytechnically problematic. This last point returns us to a theme that hasinformed this paper throughout, namely the need to acknowledge themutual construction of the socio-technical. Future work in STS on healthtechnologies will be needed more than ever, as the very nature of these tech-nologies exhibits their more complex but perhaps more evident inscriptionwith the social.

In opening the ‘black bag’ of medicine, the contribution that STS makestowards understanding the contemporary provisional, uncertain, and risk-laden trajectory of medical futures need not lead us into a situation where ourdeconstructivism is simultaneously destructive. The deconstruction of ‘the





technical’ to reveal its ‘socially congealed’ properties does not mean that thetechnical has a materiality and functionality that has no value; indeed, onemight argue that the more medical technologies run through and are shapedby the social gauntlet of their construction, the more robust they are likelyto be.7 As Williams (2001) has recently argued, the capacity to deconstructthe biomedical model and its epistemological arrogance need not lead us intoa parallel sociological conceit that denies any warrant to medial knowledgeclaims only to give preference to those of our own. As he says,

. . . biomedicine, in its knowledge and practice, is all too readily ‘written off ’or ‘interpreted away’ through an abandonment of any notion of progress, ora (pragmatic) acceptance of the positive contribution it can make to the livesof embodied individuals, health or sick . . . [such] playful deconstructions . . .

may be a somewhat more attractive option for the ‘healthy’ than the sick.(p. 150)

This paper has mapped out the principal changes that contemporary inno-vative health technologies are bringing about. In doing so, I have drawn notonly on the recent work of those working in STS, but also contributions fromscholars from the sociology of health and the sociology of the body. Futureresearch in STS would benet from a closer link to these elds of inquiry,while they, in turn, should devote more attention to those socio-technicalprocesses that are shaping medicine and indeed redening the relationbetween our bodies and our health.

Notes1 For a critique from within feminism of this position see Gill and Grint (1995).2 See the controversy over Antinori and Zavos’ plans to clone human embryos.3 As Rabinow (1992) said almost a decade ago in relation to genetics: ‘The new

genetics will carry with it its own distinctive promises and dangers’, and in similarvein, Morgan (2001) remarks that ‘the unprecedented speed of change in medicalpractices has produced new, radical uncertainty and hence anxiety’ (p. 37, emphasisin the original).

4 http://www.patsy.ac.uk/main.html5 That is, cytosine (C), thymine (T), adenine (A), guanine (G).6 See the announcement at http://www.sanger.ac.uk/HGP/draft2000/nhgri.shtml7 On this point see Nowotny et al. (2001: ch. 11).

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Innovative Health Technologies - Andrew Webster