On designing an algorithmically enhanced NHS: towards a conceptual model for the successful implementation of algorithmic clinical decision support software in the National Health Service

Established in 1948, the National Health Service (NHS) has lasted 75 years. It is, however, under considerable strain: facing chronic staff shortages; record numbers of emergency attendances; an ambulance wait-time crisis; and more. Increasingly, policymakers are of the view that the solution to these problems is to rely more heavily on one of the NHS’s greatest resources: its data. It is hoped that by combining the NHS’s data riches with the latest techniques in artificial intelligence (AI), that the means to make the NHS more effective, more efficient, and more consistent, can be identified and acted upon via the implementation of Algorithmic Clinical Decision Support Software (ACDSS). Yet, getting this implementation right will be both technically and ethically difficult. It will require a careful re-design of the NHS’s information infrastructure to ensure the implementation of ACDSS results in intended positive emergence (benefits), and not unintended negative emergence (harms and risks). This then is the purpose of my thesis. I seek to help policymakers with this re-design process by answering the research question ‘What are the information infrastructure requirements for the successful implementation of ACDSS in the NHS?’. I adopt a mixed-methods, theory-informed, and interpretive approach, and weave the results into a narrative policy synthesis. I start with an analysis of why current attempts to implement ACDSS into the NHS’s information infrastructure are failing and what needs to change to increase the chances of success; anticipate what might happen if these changes are not made; identify the exact requirements for bringing forth the changes; explain why the likelihood of these requirements being met by current policy is limited; and conclude by explaining how the likelihood of policy meeting the identified requirements can be increased by designing the ACDSS’s supporting information infrastructure around the core concepts of ‘utility, usability, efficacy, and trustworthiness’

Impact of Group Cognitive Behavior Therapy on Adolescents with Deficits in Inhibition

Existing literature connects impulse control dysfunction to high-risk behaviors and negative life outcomes. Evidence-based interventions for children and adolescents who are at-risk or who are displaying significant levels of impulsive behavior are necessary in order to promote self-control, and in turn, positive life outcomes. This study investigated the impact of an eight-week, school-based GCBT intervention on cognitive inhibition and behavioral impulsivity in adolescent participants. The intention of the study was to evaluate the trend in inhibition and impulsivity from baseline to post-intervention assessments across five middle school students dually enrolled in a residential treatment facility and a center-based emotional support program. Although conclusive statements regarding the effects of the intervention program on the adolescent participants were unable to be made because of the small sample size and the absence of a control group, trends in the data suggest that the intervention had a positive impact on the behavior of four of the five student participants

Regulation by Design:Features, Practices, Limitations, and Governance Implications

Regulation by design (RBD) is a growing research field that explores, develops, and criticises the regulative function of design. In this article, we provide a qualitative thematic synthesis of the existing literature. The aim is to explore and analyse RBD’s core features, practices, limitations, and related governance implications. To fulfil this aim, we examine the extant literature on RBD in the context of digital technologies. We start by identifying and structuring the core features of RBD, namely the goals, regulators, regulatees, methods, and technologies. Building on that structure, we distinguish among three types of RBD practices: compliance by design, value creation by design, and optimisation by design. We then explore the challenges and limitations of RBD practices, which stem from risks associated with compliance by design, contextual limitations, or methodological uncertainty. Finally, we examine the governance implications of RBD and outline possible future directions of the research field and its practices

NHS AI Lab: why we need to be ethically mindful about AI for healthcare

On 8th August 2019, Secretary of State for Health and Social Care, Matt Hancock, announced the creation of a £250 million NHS AI Lab. This significant investment is justified on the belief that transforming the UK’s National Health Service (NHS) into a more informationally mature and heterogeneous organisation, reliant on data-based and algorithmically-driven interactions, will offer significant benefit to patients, clinicians, and the overall system. These opportunities are realistic and should not be wasted. However, they may be missed (one may recall the troubled Care.data programme) if the ethical challenges posed by this transformation are not carefully considered from the start, and then addressed thoroughly, systematically, and in a socially participatory way. To deal with this serious risk, the NHS AI Lab should create an Ethics Advisory Board and monitor, analyse, and address the normative and overarching ethical issues that arise at the individual, interpersonal, group, institutional and societal levels in AI for healthcare

The limits of empowerment: how to reframe the role of mHealth tools in the healthcare ecosystem

This article highlights the limitations of the tendency to frame health- and wellbeing-related digital tools (mHealth technologies) as empowering devices, especially as they play an increasingly important role in the National Health Service (NHS) in the UK. It argues that mHealth technologies should instead be framed as digital companions. This shift from empowerment to companionship is advocated by showing the conceptual, ethical, and methodological issues challenging the narrative of empowerment, and by arguing that such challenges, as well as the risk of medical paternalism, can be overcome by focusing on the potential for mHealth tools to mediate the relationship between recipients of clinical advice and givers of clinical advice, in ways that allow for contextual flexibility in the balance between patiency and agency. The article concludes by stressing that reframing the narrative cannot be the only means for avoiding harm caused to the NHS as a healthcare system by the introduction of mHealth tools. Future discussion will be needed on the overarching role of responsible design

Enabling digital health companionship is better than empowerment

Digital Health Tools (DHTs), also known as patient self-surveilling strategies, have increasingly been promoted by health-care policy makers as technologies that have the capacity to transform patients’ lives. At the heart of the debate is the notion of empowerment. In this paper, we argue that what is required is not so much empowerment but rather a shift to enabling DHTs as digital companions. This will enable policy makers and health-care system designers to provide a more balanced view—one that capitalises on the benefits of DHTs, while minimising the risks of potential harms

Extreme energy, ‘fracking’ and human rights: a new field for human rights impact assessments?

This article explores the potential human rights impacts of the ‘extreme energy’ process, specifically focussing on the production of shale gas, coal-bed methane (CBM) and ‘tight oil’, known colloquially as ‘fracking’. The article locates the discussion within a broader context of resource depletion, the ‘limits to growth’ and the process of extreme energy itself. Utilising recent secondary data from the United States and Australia, combined with the preliminary findings of our ethnographic fieldwork in the United Kingdom, the article outlines a prima facie case for investigating ‘fracking’ development through a human rights lens. Indeed, based on considerable emerging evidence we argue that ‘fracking’ development poses a significant risk to a range of key human rights and should thus form the subject of a multitude of comprehensive, interdisciplinary human rights impact assessments (HRIAs) as a matter of urgency. Finally, given the close relationships between government and extractive industries, we argue that these impact assessments must do more than bolster corporate social responsibility (CSR) statements and should be truly independent of either government or industry influence

How to design a governable digital health ecosystem

It has been suggested that to overcome the challenges facing the UK’s National Health Service (NHS) of an ageing population and reduced available funding, the NHS should be transformed into a more informationally mature and heterogeneous organisation, reliant on data-based and algorithmically-driven interactions between human, artificial, and hybrid (semi-artificial) agents. This transformation process would offer significant benefit to patients, clinicians, and the overall system, but it would also rely on a fundamental transformation of the healthcare system in a way that poses significant governance challenges. In this article, we argue that a fruitful way to overcome these challenges is by adopting a pro-ethical approach to design that analyses the system as a whole, keeps society-in-the-loop throughout the process, and distributes responsibility evenly across all nodes in the system

Digital Phenotyping and Sensitive Health Data: Implications for Data Governance

Mobile and wearable devices, such as smartwatches and fitness trackers, increasingly enable the continuous collection of physiological and behavioural data that permit inferences about users’ physical and mental health. Growing consumer adoption of these technologies has reduced the cost of generating clinically meaningful data. This can help reduce medical research costs and aid large-scale studies. However, the collection, processing, and storage of data comes with significant ethical, security, and data governance considerations. A complex ecosystem is developing, with the need for collaboration among researchers, healthcare providers, and a broad range of entities across public and private sectors, some of which are not traditionally associated with healthcare. This has raised important questions in the literature regarding the role of the individual as a patient, customer, research participant, researcher, and user when consenting to data processing in this ecosystem. Here, we use the emerging concept of “digital phenotyping” to highlight key lessons for data governance which draw on parallels with the history of genomics research, while highlighting areas where digital phenotyping will require novel governance frameworks.I.P.P. work is supported by GlaxoSmithKline and EPSRC through an iCase fellowship (17100053); D.S. work is supported by the Embiricos Trust Scholarship of Jesus College Cambridge, and EPSRC through Grant DTP (EP/N509620/1); J.C. is the recipient of a doctoral scholarship from The Alan Turing Institute and J.M. is supported by the Wellcome Trust