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Digital Care Report | 0

2020

Exploring the Development and Ethics of Technology in Social Care: Digital Care Report


Exploring the Development and Ethics of Technology in Social Care: Digital Care Report


Foreword written by Mohammed Gbadamosi, Founder, Tech For Care; Co-Founder and Former Chair of National Association of Care and Support Workers. Report written by Dr Matthew Lariviere, UKRI Innovation Fellow, Centre for International Research on Care, Labour and Equalities, University of Sheffield. The basis of the information compiled for this report were presentations at Tech for Care’s First Annual Digital Care Conference, which took place at Millennium Point, Birmingham, UK on 12th December 2019. All intellectual property belongs to the respective speaker. The authors gratefully acknowledge the support of the Economic and Social Research Council (UK) for the UKRI Innovation Fellowship: Accelerating implementation and uptake of new technologies to support ageing in place, held by Matthew Lariviere, Grant reference: ES/S002049/1.

Acknowledgements


Growing demand for social care, coupled with sector challenges meant there is a need to embrace innovative new ways of working. Technology is increasingly seen as a vital component of the way we care. The conference aim was to explore emerging technology development and how it can be successfully integrated into how we care on a daily basis without losing the core values of 'care' in its social context. This report documents the 1st Annual Digital Care Conference organised by Tech For Care. The conference was organised as part of our organisation’s core objectives to drive the adoption of technology within the social care sector. We gratefully acknowledge and thank our speakers, panellist and sponsors. This report would not have been possible without their involvement. In this report, you will find a summary of each speakers’ presentation and panel discussions with key learning outcomes. I am grateful to Dr Matthew Lariviere, from the Centre for International Research on Care, Labour and Equalities (CIRCLE) at the University of Sheffield. Matthew acted as our learning partner for this conference and authored this report. Together with our partners and sponsors, we are committed to making this an annual event. However, with the ongoing COVID-19 pandemic, we have decided to cancel the Tech For Care Conference scheduled for December 2020. The next Conference will be in 2021 in London. We will announce the date and venue

in due course. We look forward to seeing you there. To stay informed about services offered by Tech For Care, please visit our website, techforcare.co.uk. Yours sincerely, Mohammed Gbadamosi

Founder, Tech For Care Co-Founder and Former Chair, National Association of Care and Support Workers

Foreword


Increased human longevity, austerity, precarious employment conditions for the care workforce, and increased emphasis on carers to meet workforce shortages have led the Care Quality Commission, the national regulator of care service providers in England, to warn about adult social care’s approach toward a tipping point beyond which lies the precipice of systemic unsustainability. Within this context for adult social care services, government, civil servants and entrepreneurs greet the opportunity for innovation to support these ailing services. Technological innovation in adult social care has gained increased prominence in local and national considerations to solve current pressures for the care system. Near-horizon and horizon technologies - such as robotics, artificial intelligence, Internet of Things, and digital platforms - have begun to penetrate how local providers and thought leaders in care consider how to support commissioning and delivery of social care services. Deployment of digital technology in care raises additional questions about how we design and develop appropriate technologies to support meaningful engagement for care recipients as well as support carers and the care workforce in their caregiving roles. Organised by Mohammed Gbadamosi

(Founder, Tech For Care; Co-Founder and Former Chair of National Association of Care and Support Workers), Tech for Care’s 1st Annual Digital Care Conference adopted the theme “Exploring the development and ethics of

technology in social care” to highlight the urgency to develop digital care technology capable of better efficiency and cost-savings in the care system, as well as equity, human rights and wellbeing for carers and care recipients. The Digital Care Conference was held at Millennium Point (https://www.millenniumpoint.org.uk/) in the center of Birmingham, England. This building is the only surviving building from the Millennium Commission outside of London. The building operates through a charitable trust where proceeds from profits are allocated to support training in science, technology, engineering and maths in the West Midlands. The conference welcomed delegates from across all four UK nations. Dame Moira Gibba DBE (Chair, Skills for

Care) chaired the conference and delivered the opening address. In it, Dame Moira stressed the importance of considering ethical issues as a forethought rather than an afterthought, emphasising the current and forecasted shortages of care staff as “one of the wicked issues of the age”. She critiqued technology developers’ often minimal consideration of ethical issues in technology-enabled care design and provision at the start of product ideations. She implored the audience to ensure the care workforce’s need for training and development is met in a timely way to ensure maximum advantage for service users of any new technology. Following Dame Moira’s opening address, Dr Donald Macaskill (CEO,

Report

https://www.millenniumpoint.org.uk/


Scottish Care) explored the implications of the advent of digital technology in care for ethics and human rights in his presentation, “Human Rights at the Heart of Care Technology”. Dr Macaskill noted that throughout the modern era, from steam power in the 18th century industrial revolution to mass production and computerisation in the 19th and 20th centuries, technological transformation has consistently been embedded in our everyday and working lives. Each industrial revolution has changed how we understand and act in society. The fourth industrial revolution, composed of cyber physical systems, Internet of Things and networks, also possesses the power to transform industry and productivity, including in care. Yet these new technologies raise important ethical and human rights issues: how will this technology ensure privacy as well as autonomy and choice?

How will people be able to access, control and claim ownership of data, especially with recent and ongoing investigations about how Cambridge Analytica and Facebook use data? How will these technologies promote personal choice, independence and “human” aspects of care? Dr Macaskill suggested a human rights-based approach to ensure technology continues to promote appropriate care individually and at scale with the “core recognition that all human beings have an equal worth and inherent dignity”. Scottish Care has developed a Human Rights Charter for Technology and Digital in Social Care, which affirms use of technology to support key principles of human rights including proportionality, balance, engagement and inclusion, non-discrimination and equality, accountability, legality, and progressive realisation.

Key Learning Point: Human Rights Charter for Technology and Digital in Social Care.

Must benefit individuals and the common good

Cannot be used to restrict or remove any human right but should seek to enhance and fulfil human rights,

Should enable and foster personal independence if so desired,

Should use data in a manner that respects privacy, transparency and accountability to the individual.

Should only restrict individual choice and autonomy to a degree which is proportionate and rights-abiding,

Should enable an individual to flourish and achieve their full potential,

Should as far as possible be co-designed with the individual end user’s engagement and involvement,

Should seek to involve those important to an individual in the use of technology, include family members, carers and care workers,

Should enable and augment human presence rather than wholly replace it.

Scottish Care, TechRights – Human Rights, Technology and Social Care (Nov 2019).


In his presentation, Dr Macaskill offered cautious optimism about the possibility of technology in care. Rather than spurning technology, we must have considered discussions about how best to design and deliver technologies that enshrine and embody human rights for how we envision our own ideals of care. Madeleine Starr MBE (Director of Business Development and Innovation, Carers UK), speaking next, considered how digital technology could offer support for carers in her presentation, “Technology Support for Unpaid Carers: A Win-Win”. She highlighted the central issues for carers, issues which Carers UK attempt to address. Families – along with friends and other members of an individual’s social network – care more now, while they also work and try to manage other family commitments. Due to a perpetual squeeze on resources, carers increasingly do not receive the support they are entitled to from local authorities, such as assessment of their needs or a break from caring. Without this support, carers are twice as likely as non-carers to suffer poor physical or mental health. Technology may be able to address these challenges.

A range of digital technologies is already available to support carers. Online databases and information sources can inform carers about specific conditions or support them along their caring trajectory. Platforms, like Carers UK’s Jointly, help family and friends coordinate a cared-for person’s care arrangements and medications. Remote monitoring systems can allow carers to monitor the activities, health and home of the person in their care. Consumer technologies like Amazon’s Alexa and FaceTime, allow people to connect to the outside world and communicate across geographic areas with people close to them. Despite the range of products available, there is poor awareness and mobilisation of this knowledge in the sector. Starr suggested that care professionals have many roles to play to address these systemic issues. Care professionals are ideally placed to understand the role of technology and its potential benefits for carers and care recipients. They can tell carers about technologies that can support them and the people they look after as well as signpost carers to what is available.

Key Learning Point: Technology Available to Support Carers.

Websites with information about specific conditions or support for caring

Care co-ordination and management programmes

Remote monitoring of health, wellbeing and personal activity.

Alerts and responses for emergencies and falls detection.

Connecting to loved ones through videoconferencing software

Carers UK, What can tech do for you? Modern solutions for careers.


Following the morning’s focus on human rights and carer support, Mark Sutton

(Chief Digital Officer, Care Quality Commission) argued that care regulators must embrace digital technology in their capacity to regulate and enforce quality care in his talk, “Transforming Regulation for the Digital World”. He noted an increased pace of digital innovation in adult social care, yet raised questions about the efficacy of new digital technologies. He claimed that technology should enable care to be more precise, accessible, targeted and sustainable, as demonstrated in evaluations (i.e. PATS testing). The Care Quality Commission continues to research what good innovation looks like and how it can include technology and other innovations in its evaluation methodologies. Case studies have highlighted exemplars in predominantly health contexts (such as telemedicine, telemonitoring, digital records and automated triage), with telecare the apparent lone case study for adult social care. The Care Quality Commission is currently exploring how to work with government to ensure artificial intelligence can be used effectively in care without negatively impacting people’s security. It is also working on a future strategy that will allow CQC to be more data-driven and move toward a more dynamic inspection model that can only be possible with better access to service provider data. Sutton stressed that the focus for regulation in the field must involve continuous momentum toward outcomes-driven models for quality care, with safety, individual choice and control at the centre of all decisions.

The morning concluded with a panel discussion entitled “Your Data, My Data, Whose Data?” The panel consisted of Ed Humpherson (Director-General, UK Statistics Authority), Cleveland Henry (Director of Cloud, UK Cloud Health) and Duncan Campbell (Director, everyLife Technologies). The UK Statistics Authority provides statistics regulations to ensure appropriate use of data, with no parties purposefully using data to misinform. Humpherson noted that social care is poorly served by statistics with no sense of waiting times, costs and outcomes. Henry suggested that organisations often do not share data or share data inappropriately. Campbell argued that data have not changed, but the way we use data has altered significantly. Technology has the potential to enhance clinical decision making. Significant lags exist on care records, which are not automatically or regularly updated to account for changing care needs. The slow uptake and maintenance of digital care records would be unacceptable in the implementation of an innovation in other sectors. Inaccessible data remains a systemic issue. Campbell emphasised the need to prioritise digital delivery of services in social care as this approach

Key Learning Point: PATS testing.

Evaluate technology to ensure care is more:

Precise

Accessible

Targeted

Sustainable

Care Quality Commission


has transformed future strategies in delivery of health services. All panellists agreed that “digital transformation will require people”, not full automation, to drive and deliver the agenda.

The afternoon session was chaired by Vicky Sargent (Director, CLGdotTV). Tommy Dunne BEM and Paul Hitchmough (experts by lived

experience) commenced the afternoon with “Living with Dementia in a Digital Age”, thoughtful reflections of their personal experiences of living with dementia, and how technology has supported them. Dunne and Hitchmough founded (with colleagues Pat Broster and Louise Langham) the community interest company, Transport – Health – Research – Economy – Dementia (THRED), to connect professionals in transport to improve the experience of using transport for people with dementia and other hidden disabilities. Dunne suggested good technology can be “as simple as a good hearing aid or lamp” activated by motion sensors to more sophisticated technology including motion and activity monitoring devices. Technology, however, cannot replace people or eliminate all risks. Personal

preference and capacity may mean that one technology may be a miracle for one person with dementia, but abandoned by another. Dunne and Hitchmough said care professionals and family members should consider how technology could improve the wellbeing and security of a person with dementia. Dr Rosemary Davidson (Senior

Research Fellow, University of Bedfordshire) spoke on behalf of Dr Chris Papadopoulos (Principal Lecturer, University of Bedfordshire) and the CARESSES team in her talk, “How can robotics and AI help us provide dignified, person-centred care?” Davidson identified five points of action to address the central question of her talk: Cultural competence, evidence of effectiveness, ethics and acceptability, sensible policy, and tackling cultural attitudes and perceptions that hinder uptake. Cultural competence refers to actions to consider a person’s cultural background during provision of their care. The EU-funded CARESSES project is developing a system which seeks to create a culturally competent, care robot, adapted for Pepper, a commercially available robot. Despite the literature in nursing studies evidencing the effectiveness of cultural competence in person-delivered care, there is insufficient evidence about how, and to what extent, assistive robots increase wellbeing. Use of assistive robots also raises ethical concerns in care. People need reassurance that robots will assist and complement care, not replace jobs. Governance and practice guidelines must ensure no reduction in quality of care due to reliance on robots. Sensible policy requires evidence-informed approaches, and suitably modest claims, if assistive

Key Learning Point: Statistics in Social Care.

“Social care is poorly served by statistics with no sense of waiting times, costs and outcomes.”

UK Statistics Authority


robots can only support certain user profiles or conditions. To ensure assistive robots can reach people who may benefit most from their use, there needs to be a shift in how people perceive technology, as negative cultural attitudes dominate in the UK. CARESSES is currently being evaluated through a trial in care homes in the UK and Japan, due to conclude in September.

Helena Zaum (Industry Director, Local

and Regional Government, Microsoft UK)

presented ongoing work with partners in Greater Manchester on ‘austerity-driven change’ in her talk, “Person-centred, data-driven care and wellbeing”. In Manchester, like other localities in the UK and abroad, demand for services outstrips supply. In Manchester, devolution has provided an opportunity for local providers and practitioners with fine-grained understanding of local health and care services to set priorities for systemic transformation. Zaum and her partners have created digital and workforce innovations. Recognising the increased potential of cloud computing, artificial intelligence and the Internet of Things, this consortium seeks to harness the possibilities for local government offered through these digital innovations. Multi-disciplinary teams are organised, from the entire Manchester City Region, to individual localities and integrated neighbourhoods, down to individuals. A central ‘command centre’ allows actors and decision makers to occupy the same space to support more immediate actions across the care system. This hub-based approach could transform how people access technologies with less stigmatising visibility and more integration into people’s everyday lives. Mandy Thorn MBE (Vice-Chair, National

Care Association) presented her experiences of digital transformation as a care service provider in her presentation, “Service Transformation through Digital: A Provider Perspective”. Shropshire Partners in Care have digitised their payroll/accounts, administration, human resources, care planning, quality assurance and auditing, medication adherence, and maintenance planning

Key Learning Point: Culturally aware robots.

The CARESSES project seeks to render robots more culturally aware and responsive to older people and the care workforce through the design of a new system for Pepper (pictured above).

CARESSES and Softbank Robotics


across the managed sites. Digital technology has provided tools to transform how people perceive and enact their duties as well as processes of management and accountability for quality care. To achieve this outcome, Shropshire Partners in Care has required an ongoing process to ensure staff understand information governance and cyber security. Care providers remain ahead of regulators for digital technology, such as care records. Without support and recognition from regulators, organisations may not continue to invest in technology capable of improving quality of care and dignity of service provision. Keith Strahan (Principal Clinical Lead,

NHS Digital) provided the final presentation of the afternoon, entitled “Better Information Sharing”. He observed that there are 1.62 million jobs in adult social care in the UK. Yes despite examples of good digital information sharing, most practitioners still post, fax or hand-write notes and other information - if they share any information at all. Health and social care providers are not routinely joined up, which can lead to duplication of work. The Data Security and Protection Toolkit is an online self-assessment tool to evaluate data security. The Department of Health and Social Care recommends that all adult social care providers complete the toolkit as all provider organisations will necessarily hold and use personal data. The toolkit has an ‘entry level’ which ensures a provider meets the minimum legal requirements and has access to free NHS email. The next ‘standards met’ level demonstrates that an organisation has met all

mandatory requirements as defined inthe toolkit. Beyond the ‘standards met’ level, providers can participate in and access secure digital and health options. Digital Social Care, an NHS Digital investment led by the Care Provider Alliance, provides guidance and additional materials to support care providers and the workforce. They currently offer access to the Data Security and Protection Toolkit, NHS email, cyber security, a digital readiness toolkit, and evidence from exemplary cases of digital technology innovation from across the country. Personal and Summary Care Records are now being trialled in care homes to make important information about a person’s preferences and medical history available to care and residential workers. Plans are underway to test Summary Care Records with domiciliary care teams.

Digital transformation of social care and health is crucial to integrated services around an individual, whether at home, hospital or in residential care. A digital ecosystem built around a person will be the future of joined up service provision. To conclude the conference, Lydia Nicholas (Programme Manager, Better

Key Learning Point: Digital Information Sharing.

“Digital information sharing between health and social care appears to be largely absent.”

NHS Digital


Care Systems, Doteveryone) and Dr Matthew Lariviere (UKRI Innovation Fellow, University of Sheffield) joined Keith Strahan (Principal Clinical Lead, NHS Digital) for a final panel, “Adopting Co-Production Value to Social Care Tech Development”. Strahan began the panel with a video of a young adult with profound disabilities, to demonstrate the impact of Personal Care Records. Nicholas discussed the key findings identified from the Doteveryone Better Care Systems report, including: the need for better data in the care system, better skills for the workforce, and a better culture around enablement for care recipients. Dr Lariviere highlighted the urgent need for infrastructural development to realise visions of smart homes and other digital technology across the country. Digital technology solutions will be inappropriate if individuals cannot afford or access broadband and mobile networks. He also raised fundamental questions about what we, as a community of practice, mean by ‘care’ when we discuss ‘digital care’ transformation. He suggested a thoughtful consideration about how

technology can support the affective, relationships-based approaches to caring enshrined by our society. In summary, Tech for Care’s First

Annual Digital Care Conference brought together leaders with lived experience, as well as from policy, practice and research, to share best practice, diffusion of innovations, and critical responses to dilemmas in the digital transformation of social care. We acknowledge the deficits in data – its volume, quality, management and sharing – in social care. Yet private and public partnerships strive to alleviate these conditions locality-by-locality. The scale, spread and sustainability of innovations remains a challenge for the sector. However, by coming together to share our own challenges and opportunities to implement digital care technology, we demonstrate that our struggles for digital transformation are neither isolated nor insurmountable.

Key Learning Point: Recommendations for Better Care through/with technology.

We need better data to build and measure technology focused on wellbeing outcomes.

We need a care workforce and carers with the skills to use technology in care.

We need a culture of design and implementation that will enable people to adopt and shape technology to their needs and how they wish to live their lives.

Doteveryone, Better Care in the Age of Automation: Data, Skills & Culture for a Better Care System.


Digital Care Report

Published May 2020

Tech for Care is a social care community resource, dedicated to championing the digitization of the social care sector and promoting more technology-enabled care services. Tech for Care’s website remains the first and only UK review, comparison and product listing platform dedicated to software and innovative technologies used in the social care sector (and health).

The Centre for International Research on Care, Labour and Equalities was established in 2006. Led by Prof Sue Yeandle, it is an internationally renowned centre conducting research, evaluation and consultancy of contemporary policy, practice and theoretical issues and debates on care, labour and equalities.

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