Introduction
Innovation is one of the major processes shaping the health-technology-society relation: innovation of technologies, of healthcare systems, of the very meaning of health and its absence. This section draws on extracts from five of the HTS books, which, in their different ways, examine innovation and its meaning, especially how innovation processes are shaped by different contexts and practices. Other books in the Series also explore innovation processes. But these five have been selected as they cast particularly valuable light on some of the most important issues and challenges we need to consider when thinking about innovation.
The first text, by Marianne Boenink et al. (2016), takes as its primary focus what is meant by diagnosis? Considerable innovation-led effort is devoted to finding new diagnostic markers for all forms of diseaseābiomarkers for cancer, for example. Far from a straightforward matter however, the authors show, through a rich and detailed exploration of Alzheimerās disease, that what the disease is, how it is measured, experienced and treated are shot through with uncertainties and risks. We encounter stories about boundariesābetween practitioner and patient, between the normal and abnormal, between the clinic and everyday experience: all sites where what it is itself never easily settled. The development of novel drugs, diagnostic techniques or measures of āageingā while of value in their intent raise new questions about what counts as a responsible innovation regime in this field, especially with the push towards āearlier diagnosisā. The notion of āresponsible research and innovationā (RRI) has gained prominence in recent years and opened up debate within the social sciences, regulatory agencies and policy-making. These chapters (and others in the Series) stress the need to understand the values and practices in the lab, the clinic and the healthcare system more broadly: innovation never āspeaks for itselfā but has to be spoken for. So whose voices are heard and why?
This takes us towards a second major problem in the HTS relationāthe adoption of innovation in clinical settings. Who speaks for them? We know that innovation has to be adapted before it is adopted: contexts of use and localised understanding shape what an existing and a new technology mean and how they will be deployed (May et al. 2016). In this regard, innovation and its material incarnation are best understood as a ādistributed effectā (SĆørensen 2007: 45), that is material innovation is defined through the relationship between things and āmoulded by the intersection of natural and social factorsā (Law 2010). The extracts from Nelly Oudshoornās book on telemedicine show this distributed effect very clearly as innovation here depends on the distributed labour and interpretation of imaging and data by diverse clinical and non-clinical actors, including, very importantly, patients themselves. The spatial implications this has Oudshoorn describes as the ātechnogeography of careā.
John Gardnerās book, Rethinking the Clinical Gaze (2017), our third text, examines the process of innovation in the field of ādeep brain stimulationā. His book shows how this relatively new therapy used to treat a complex and very debilitating disorder, dystonia, reveals the ways in which the traditional clinical gaze has become broader in scope and power. He shows too that this is a result of the arrival of āpatient-centred innovationā and the creation of complex innovation platforms that are created through clinicians and other professionals working in this area, platforms that disturb conventional organisational structures and processes associated with the delivery of medical therapies and through which the adoption of innovation is made possible.
A key feature of innovation in health and other sectorsāits digital characterāis of central importance today (and reflected in Oudshoornās own text). Our fourth book, edited by Ellen Balka et al. (2009), describes how what they call the ācomputerization of health careā. This goes far beyond saying āthe digitalā has a growing presenceāfor example, in diagnosis, screening, visualisation and imaging, patient management, organising care at the hospital level and so on. The extracts we have selected from across the different chapters show how the everyday use of ICT systems not only reflect and shape organisational and professional practices and structures, but also mediate and often reproduce gender and racial relations and hierarchies. In understanding these processes we are in a much better position to develop not only critical but also constructive engagement with the ācomputerisationā process, by being then able to describe how to improve on the implementation of information systems in hospitals and elsewhere and to do so such that these hierarchies begin to collapse.
The final text, edited by Rebecca Lynch and Conor Farrington (2018), continues this focus on āthe digitalā but here in regard to the rapid growth of āpersonalised medical devicesā (PMDs ) often used outside of (and indeed counterposed to) conventional medical settings. The extracts we have selected illustrate both the use of PMDs in clinical and non-clinical contexts. The growth of PMDs reflects the huge commercial investment in self-monitoring devices (such as Fitbits) and the push (by government and professions) to more self-reliance and personal responsibility for oneās own health. This echoes Foucaultās notion of governmentality whereby the embrace of personal responsibility for health is a form of social control. However, as this text shows, ācontrolā overstates the provisional, uncertain status given by users to PMD information and device-generated reporting. The chapters show too how the āhealthā of the individual is dependent on the āhealthā of the device itself, and the āhealthā of both is given wider definition and meaning from the array of other social actors and networks with which people are involved. What the āquantified lifeā and the data that records this actually means is far from straightforward.
This drive towards personalised medicine seen in many countries reflects another broader aspect of innovation that is seen in the HTS series and wider STS, social science scholarship. This is the need to give as much attention to wider regimes of healthcare . For example, in 2018/2019, the UK introduced a āGenetics Health Serviceā within the broader NHS to reflect the growing use of genetic data, gene therapy and post-genomic modelling of disease. Such a move both reinforces the āpersonalisedā (DNA-susceptibility) form of medicine we can expect, and the continued growth of commercial activity to exploit this via the provision of kits and āDIYā biology online and in private clinics. In other words, to understand innovation we need to understand health as an eco-system based on older and newly emergent social and technical platforms that redefine the very meaning of health and its delivery, and who delivers it. This also raises questions about how society oversees, governs and regulates such innovative socio-technologies: this is the key question we explore in a later Theme Section on Regulation itself.
We now move to a selection of extracts chosen from the four books in the Series. Each set of extracts concludes with a new, short reflection on the book and how the authors now see their work and its contribution developing further.
Marianne Boenink, Harro van Lente and Ellen Moors. (Eds.) (2016). Emerging Technologies for Diagnosing Alzheimerās Disease. Innovating with Care. Winner of the 2018 Chris Freeman Award, European Association for the Study of Science and Technology
From: Peter Whitehouse. The Diagnosis and Treatment of Alzheimerās: Are We Being (Ir)Responsible?, pp. 21ā29
Within a given society, who gains power to try to assist people trying to improve their memory depends on concepts of how body and brain relate to each other and what the respective roles of healers and educators (e.g. shamans, psychiatrists, neurologists, school teachers, parents etc.) are. In twenty-first-century Western culture, diet, general health, cognitive activity, education, income, and social relations have all been tied to ābrain healthā and clinical conditions, such as dementia (George et al. 2013). In this chapter, I call for a radical re-examination of the factual and value issues surrounding this critical issue of our timesācognitive and behavioural ageingāin the context of the other complex challenges of our modern world. ā¦ I set the stage for a consideration of responsible research, innovation, planning, and use of resources in addressing dementia and brain health, including discussing linguistically contested concepts, such as āAlzheimerās disease (AD)ā and āmild cognitive impairment (MCI)ā. I will examine shifts over time in perspectives about both diagnosis and therapeutics ā¦.
The current state of Alzheimerās is one of quite widespread dissatisfaction with available diagnostic and therapeutic approaches from patients, families, physicians, and policymakers. A shift in emphasis from systems to molecular neuroscience occurred as genetic mutations in early-onset AD pointed to problems in amyloid-related proteins that are associated with neurotic or senile plaque ā¦.
The genetic revolution in medicine influenced the dementia field to raise their expectations for more powerful therapies based on understanding cause and pathogenesis. There are, however, significant challenges to this attempt to develop molecular and genetic diagnostics and therapeutics. Alzheimerās is heterogeneous at any level at which it is examinedāgenetic, pathological, neurochemical, or clinical (Whitehouse and George 2008). Several hundred causative genetic mutations and a few risk-modifying genes have been described in different patient populations. The relative distribution of cell loss and pathological features can vary across different individuals. It is a truism in the field that: āonce you have seen one patient with Alzheimerās youāve seen one patient with Alzheimerāsā.
So where are we today? Some peopleāperhaps the majority of researchers and their advocatesāthink that the march to progress continues even at a slower pace. For them, the model and hope of the future is more money, leading to more hypotheses, panels of biomarkers, bigger data sets, more efficient drug development (through less regulation and centralized, and perhaps, relaxed ethical review), and ultimately, a cocktail of therapies. Yet, many studies are not even replicated in the lab and the hope is found to be false. ā¦ Just as we are culturally reinventing ageing to be viewed as a time of opportunity, not just loss, Alzheimerās remains the elephant in the room, causing fear and mental blocks. That said, an alternative, more geriatric, public health, social science, and arts/humanities-based perspective about dementia is emerging. The social sciences, such as anthropology, can provide new critical perspectives (Whitehouse et al. 2005). In this view, dysfunction and disability are more important than precise diagnosis; quality of life trumps cognitive enhancement; community engagement is key; and population health perspectives gain influence over individual health (Whitehouse 2010).
Behind the standard view of AD and the dominant ways of presenting this perspective to the public lies much irresponsibility. The concept of Alzheimerās has changed over time, is changing now, and perhaps, even needs elimination or significant revision. ā¦ Does being irresponsible increase the costs of missed opportunities, such as investment of resources else-where in a non-medical way (Katz and Meller 2014; Whitehouse 2010; Portacolone et al. 2014)? ā¦ I have argued here that at least some behaviours in the Alzheimerās field are irresponsible. Individual scientists who self-promote, and, for example, publish studies in animals that claim dramatic implications for human disease (i.e. breakthroughs) are individually irresponsible. They raise false expectations and hope and drive resources in inappropriate directions to irresponsible actors ā¦.
Efforts to improve the quality of life of people with cognitive impairment and their care partners are undergoing dramatic transformation. Although some hope is held out for molecular reductionist, genetically based therapies, more evidence is emerging that psychosocial and public health measures may be more effective ā¦.
A deeper and broader understanding of dementia in the context of community-based brain health could lead to huge advances in the development of our human species and its ability to address the challenging future. Education and lifelong cognitive activities have consistently shown in population studies to be protective factors against getting dementia later in life. Intergenerational education may be one social innovation relevant to community brain health and resiliency. At The Intergenerational Schools in Cleveland, local elders, including those with dementia, contribute to their own brain vitality as well as the long-term brain health of children by serving as mentors in an elementary school (George and Whitehouse 2010). Moreover, dementia-friendly communities should be part of lifelong age-friendly communities for all of us. Attending to the cognitive harms of air and water pollution and income inequity could motivate us even further to address these global issues. Asking deeper, more critical questions about āAlzheimerāsā will expose profound challenges and dilemmas surrounding and embedded in the current role of science in society, the effects of commodification in healthcare, the nature of ageing, and, in fact, our very humanity. Addressing such more fundamental probing questions about our cultural beliefs and the distribution of power in our societies should also lead to more responsible innovations and actions.
From: Julia Swallow. Understanding Cognitive Screening Tools: Navigating Uncertainty in Everyday Clinical Practice, pp. 123ā140
Aside from innovation in research, what has been easily overlooked within the promotion of early diagnosis [of Alzheimerās] is the role of existing low-technological cognitive screening tools in clinical practice. Clinical practice relies on the use of low-technological cognitive screening tools for detecting initial cognitive decline. These tools, which are pervasive across healthcare practice, are used to assess initial cognitive decline, and al...