Presented at EASST 2022, Madrid, 6th July 202

O'Donovan, Cian

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UCL Discovery

Ethics and data use in UK social carePresented at EASST 2022, Madrid, 6th July 2022 Cian O’Donovan | @cian | c.o’donovan@ucl.ac.ukUCL, Department of Science and Technology Studieswith Melanie Smallman, James Wilson, Jack Hume | UCLWork from the UK Pandemic Ethics AcceleratorUKRI grant: AH/V013947/1slides: keepfaking.it/easst2022Ethics and data use in UK social carePresented at EASST 2022, Madrid, 6th July 2022 Cian O’Donovan | @cian | c.o’donovan@ucl.ac.ukUCL, Department of Science and Technology Studieswith Melanie Smallman, James Wilson, Jack Hume | UCLWork from the UK Pandemic Ethics AcceleratorUKRI grant: AH/V013947/1slides: keepfaking.it/easst2022Ethics anddata use in UK social care1. A data ethics heuristic for evaluating radical, organisational, infrastructural data use in care2. Valuable not as a normative framework –> something to be applied across diverse  contexts and complex systems3. Assessing digital transformation policies……accelerating data infrastructures; NHS led integration and data linkage; workforce capability buildingsummaryPEOPLE MISSING IN CARE HOME DATA A case study of data use in UK social care paper:ethics and data use in uk social carePART 1Wastview Care Centre, ShetlandCoronavirus: Deaths among residents at Shetland care centre14 April 2020“The Care Inspectorate said there had been deaths at Wastview Care Centre, but has not given an exact number.”Government did not know who was in care homesAlso missing from care data:• Case mix and needs of residents • People who pay for their own care• People who don’t receive care but should• Impact - errors in: assessment; service evaluation; evidence base for policy• People died because of these errors• Produces publics, communities, categories• Foregrounds…• Needs (often via aggregate pop. health data)• Monitoring users, staff, resources, quality of services• System performance• Backgrounds…• Measures of care like wellbeing• Appraising new services• Structures governance• …permitting top-down, centralized action by govt., state, firmsZooming out: What data in complex care settings doesO’Donovan, C. (2022). Accountability and neglect in UK social care innovation. International Journal of Care and Caring. https://doi.org/10.31235/osf.io/yr75fthis paper’s motivationHow do we build capacity (ethics frameworks andpractices) so that people at all levels can interrogate, participate in and benefit from data use?SO WHAT IS SOCIAL CARE EXACTLY?Four perspectives on social care:; organisational; infrastructural; radical; groundedpaper:ethics and data use in uk social carePART 2Social care is how society orderspractices of care and distributes responsibilities and obligations for these practices between markets, the welfare state, voluntary sectors and familiesMary Daly and Jane Lewis (2000) ‘The Concept of Social Care and the Analysis of Contemporary Welfare States’, The British Journal of Sociology 51, no. 2, 281–98, https://doi.org/10/cgvrr4Social ordering Infrastructures of care The social, material and technological systems of knowledge, people, relations, rules, resources and data required to imagine, build, maintain and deliver care practicesInfrastructures situate and structure obligations and agency. E.g. accountability Langstrup, H. (2013). Chronic care infrastructures and the home. Sociology of Health and Illness, 35(7), 1008–1022. https://doi.org/10/f48gwtO’Donovan, C. (2022). Accountability and neglect in UK social care innovation. SocArXiv. https://doi.org/10.31235/osf.io/yr75fRadical, indispensable and invaluable workIndispensable: It is work that makes all other work possibleInvaluable: society is incapable of valuing care properlyRecognizing the value and potential of care, socially as well as economically, depends on a different understanding of what care actually is: not a service but a relationship that depends on human connectionGrounded goals of system reformers“So going forward, the priority should be: ensuring that health and social care data are fit for purpose in understanding care requirementsand outcomes for care home residents more generally”A HEURISTIC FOR EVALUATING THE PRACTICES AND PROMISES OF DATA USENorms, values, complexity, scalepaper:ethics and data use in uk social carePART 3heuristic for evaluating data use in care systems(like a framework, just not as fully committed)norms, valuescomplexitycontext and scaleWhat gets valuedHow we understand change, cause and effect in complex systemsWhere where the action happens and what’s at stakeNormative values and frameworksfrom data ethics literature • Value choices in policy (e.g. health vs social care)• Existing (clinical) guidelines aimed at emerging AI, big data etc.• Focus: rights and individuals, • Assumptions: ethically sound data-use *is* possible • Neglected: social ordering effects• Normative frameworks might help assess impacts on individuals• But erase context and complexitySmallman, M. (forthcoming). Multi Scale Ethics: Why we need to consider the ethics of AI in healthcare at different scales.• Why are some people still missing from social care data? • … not important enough to be datafied? • … or not important enough to decision makers becausethey are missing from data? • Is data use acknowledging uncertainty or shielding it?Uncomfortable questions about who/what is valued: (not just better measurement)place, context, scale• Potential of interactions at different scales to generate new problems• Social care action happens 'in the community’…• …but planning and resource allocation often happens at local or national government level• Across scales: logics of population health vs care data useSmallman, M. (forthcoming). Multi Scale Ethics: Why we need to consider the ethics of AI in healthcare at different scales.On the ground - first, getting the basics right• 3 in 4 care homes are still paper based• Data capabilities that matter to people working in care• Data infrastructures: Minimum data sets• RISK: in a rush to lock-in the data “gains” made during covid-19, the basics digital needs of the care sector are neglected –e.g. increased burdens on care workforcesComplexity and performativity(How we understand change in complex systems)• Command-and-control systems often fail to anticipate their own systemic effects (performativity)• Change understood as interaction of mechanisms(rather than assumed constant)• “There are no side effects – only effects”• Side effects are not a feature of reality, but a sign that the boundaries of our mental models are too narrow, our time horizons too short.• Systemic harms can occur without it needing to be the case that anyone intends to create harm or act unfairly• BUT: neglectful states can distract from systemic failings by framing systemic harms as failures of personal responsibility (Wilson 2021)• Disincentive: more data makes policy failure more obviousWilson, J. (2021, September 21). The intervening state. The RSA. https://www.thersa.org/comment/2021/09/the-intervening-stateWilson, J. (2021). Philosophy for public health and public policy: Beyond the neglectful state. Oxford University Press.Complexity –challenging assumptions in digital transformation plansPlans for Integrated Care Systems presume to…• Improve access to resources• Decrease burdens on front line staff• Retain access to non-digital services• Decrease risk / increase value for ICS playersCutaway of integrated care system schematicBringing things togetherHow we have used findings in the UK Pandemic Ethics Acceleratorpaper:ethics and data use in uk social carePART 4Some things recommended by us and others(heterogeneity in social care systems) • Plans must spell out assumptions• Plans must distinguish between how different groups in society interact with health and social care data• Diverse groups / orgs will benefit differently. • Priority: building public trust in wider care system while broadening data use• Acknowledge tension: “No one wants to reduce operational capacity to allow for transformational capacity”1. A data ethics heuristic for evaluating radical, organisational, infrastructural data use in care2. Valuable not as a normative framework –> something to be applied across diverse  contexts and complex systems3. Assessing digital transformation policies……accelerating data infrastructures; NHS led integration and data linkage; workforce capability buildingsummaryEthics and data use in UK social carePresented at EASST 2022, Madrid, 6th July 2022 Cian O’Donovan | @cian | c.o’donovan@ucl.ac.ukUCL, Department of Science and Technology Studieswith Melanie Smallman, James Wilson, Jack Hume | UCLWork from the UK Pandemic Ethics AcceleratorUKRI grant: AH/V013947/1slides: keepfaking.it/easst2022

Ethics and data use in UK social care

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Ethics and data use in UK social care

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