Digitising Health and Social Care – Why a Technofix Won’t do
The COVID-19 pandemic has accelerated the development and speed of adoption of digital technology in every sphere of healthcare, including individual health management and care, population-wide health approaches, and the real-time generation, management and integration of medical data. Discussions of healthcare futures are suffused by references to ‘digital transformations’ and ‘digital transitions’, where digital technology is often looked upon as the panacea to the global ‘crisis of care’ and the challenges posed by ‘ageing populations. This can run the danger of the widening gap between care needs and available resources being oversimplified as a problem of organisational deficiency, inefficiency, poor information management, outdated technology, and a shortage of staff. Although these are very real problems and digital technology holds great potential here in improving matters, their underlying causes run the danger of remaining unaddressed by focusing solely on technology as the silver bullet.
The digital transformation of the National Health Service (NHS) in England, encompassing the digital transformation of health- and social care (the latter providing people with practical assistance and personal care if they need it), is a case in point. In 2023, the number of people on waiting lists for hospital treatment in England peaked at 7.8 million, while over 2.6 million people over the age of fifty were on waiting lists for social care, ‘left struggling to go to the toilet, eat, get dressed or wash’. Research by Age UK showed that between 2022 and 2023, 28,655 adults over the age of sixty-five died before they reached the top of this list and received the care they needed. This equates to an average of 79 deaths a day, 550 deaths a week, and 2,388 deaths a month. To tackle such backlogs, partly caused by the chronic staff shortages and high staff turnover besetting the sector, the digital transformation of health and social care is looked upon here as the solution to systemic problems besetting the healthcare system. Regarding staff shortages, for example, finding a techno-fix must seem far easier to policymakers than addressing the root causes of what professor of philosophy and politics Nancy Fraser has referred to as the ‘social-reproductive crisis’ caused by capitalist relations of production. Hence policies like England’s 2021 white paper People at the Heart of Care and the 2023 Next Steps paper look to the ‘transformative power’ of digital technology to improve the quality, safety and personalisation of care. However, this transformative power has many different sides, not all of which are necessarily positive.
While not too long ago, a patient’s first point of contact with the National Health Service (NHS) would have been a receptionist, spoken to either in person or over the phone, today, this is likely to be the NHS app, widely regarded as the ‘front door’ of the NHS. It has over 28 million people subscribers who use it to access health- and social care services, check medical records, book appointments, or order prescriptions. Between October 2021 and September 2022, 1.2 billion people also visited the NHS website, primarily to find Covid-related information. Today, an average of twenty-three million people access what has become Europe’s largest online health information source weekly. While there are many benefits associated with these developments, digital technology, unfortunately, does not benefit everyone equally. Many people don’t know how to use it, lack the financial resources required to purchase it, have no broadband connection, or simply do not wish to make it part of their life.
Older adults, long known to be lesser beneficiaries of the digital economy, are particularly prone to what has come to be referred to as ‘digital exclusion’. 25% of people aged over sixty-five in the UK do not use the Internet and lack essential digital skills, risking access to digital health services, and, increasingly, to services like banking and shopping. Data from the English Longitudinal Study of Ageing (ELSA) shows that accessing medical appointments, support services, and consumer activities in the UK was made worse for the digitally excluded during Covid, ‘further exacerbating the negative health impact of the pandemic, increasing isolation and loneliness, and social exclusion.’ The cost-of-living crisis in the UK has since forced many more people to give up their broadband access to afford essentials. This digital skills gap between age groups is not unique to Britain. Eurostat data collected across all EU member states in 2023 found that only 33% of those aged between fifty-five and seventy-four years of age had basic digital skills, compared to 80% of individuals aged between sixteen and twenty-four. However, older adults are not the only ones lacking digital skills.
The Lloyds Consumer Digital Index of 2023 found that over 54% of working adults in the UK – including many carers – don’t know how to perform the 20 tasks that industry- and government representatives have deemed essential for today’s digital workplace. Large numbers of people are, therefore, in real danger of being left behind in the workplace if digitalization continues apace. This poses serious challenges, including for the health sector, where experts have warned that there is still a long way to go in order to close the digital skills gaps and bring about a successful digital transformation.
Digitalisation in the fields of health and social care, however, is about much more than simply changing how people access the NHS. It encompasses:
- data analytics and artificial intelligence (AI) used for the diagnosis and treatment of health conditions, personalization of treatments, and resource allocation;
- digital technology/AI used to assist with administrative tasks, data integration, and data management;
- wearable devices and remote monitoring solutions for preventive care, chronic disease management, and the self-management of well-being to enable people to stay healthy, independent, and at home for longer;
- “virtual wards” in care homes and homes that rely on telehealth and telecare technologies to ease pressure on hospitals, and
- digital mental health services that offer online counselling and therapy platforms.
Although these developments can bring many benefits, they also create new challenges that will have to be properly examined and overcome. For example, virtual care models like ‘virtual wards’ have the potential to further marginalise vulnerable populations and exacerbate existing healthcare disparities. The Health Foundation also believes that inclusive, participatory decision-making will be key to their success as not everyone is convinced that they are the right way forward. The digital transformation of health and social care also raises concerns around:
- Data Security and Privacy: data breaches and unauthorized access to sensitive patient information here could result in identity theft, financial fraud, and compromised patient safety.
- Cybersecurity: interconnected healthcare systems reliant on digital technologies are vulnerable to cyberattacks. These could disrupt healthcare services and result in patient data being stolen and medical devices being manipulated. Cybersecurity is essential to protect patient safety and public health.
- Inequality and Accessibility: digitalization can exacerbate existing health inequalities (digital divide), discriminating against vulnerable populations like the elderly, low-income individuals, and those living in remote rural areas.
- Ethical and Legal Issues: the digitization of patient data raises complex ethical and legal issues related to consent, data ownership, algorithmic bias, and patient autonomy. Ethical principles, the means of upholding them, and compliance with relevant regulations are the keys here to protecting patient rights and engendering trust.
- Loss of human connection and empathy: Remote consultations, remote monitoring, and replacing carers with robots impact patient-carer relationships, potentially exacerbating loneliness and resulting in a loss of empathy.
This final point is particularly concerning in the context of the World Health Organisation (WHO) declaring ‘loneliness’ as a global public health threat in 2023. Research has shown, for example, that substituting human interactions and caring relationships with robots is probably not the right – or most efficient – way forward.
This view is shared by the European Public Services Union, which warned in 2023 that addressing labour shortages in care homes with robots based on ‘rationales premised on cost reduction are neither realistic nor desirable.’
The inclusion of diverse voices in decision-making processes around digital futures is essential – including those of older adults
Digital technology is a ‘disruptive’ technology with the power to sweep ‘away the systems or habits it replaces’, creating new challenges and problems in its wake. Concerns have been growing about the extreme, large-scale risks that transformative technologies like powerful AI systems could pose for society, and in 2024, the Washington D.C.-based Center for AI and Digital Policy warned that the ‘race to replace people in the workplace, in schools, for elder care and nursing is on’. Amidst the push by governments and private sector industry for the speedy digitalisation of nearly every sphere of human life, calls such calls for more time to explore the long-term consequences of digitalisation struggle to be heard. Innovation today, including digital innovation, is predominantly driven by a privately funded, profit-motivated, knowledge economy. This can leave little room for the upstream, public engagement in Research & Development (R&D) processes as those recommended by Responsible Research and Innovation (RRI) guidelines. Discussions around the development and governance of AI, in particular, are dominated by the private sector industry. This situation has led to pleas for a slow science where scientists and innovators make time for listening to divergent and opposing views about their work, taking them on board, and for the bottom-up co-production of techno-futures where those ‘standing the most risk of being harmed’ can have a full say. This particularly includes older adults, and they could once again be the ones drawing the short straw. In recommendations recently made to robot device developers reminding them of the importance of stakeholder engagement in decision-making processes around the role of robots in care homes (Carebots), older adults were conspicuous by their absence. Yet, they will be the ones most affected by them where care homes go down that route.
Interviews carried out with older adults as part of the DigiAge project underline the need for more people-centred approaches in the design of digital technologies and the decision-making around their governance, regulation and use. Of the sixteen older adults aged between sixty-eight and ninety-two years of age we interviewed in 2024, the large majority were concerned about the pace of technological change, feeling unable to keep up with it. Many were also worried about how their private data was being used, and not in support of the automation of telephone services. Concerning in-home monitoring and ageing at home, some felt trapped. There was widespread concern that the focus on ‘machines’ was putting society in danger of losing what it meant to be human, which led many of them to call for a ‘slowing-down’ and ‘re-think’ of digitalisation.
However, is disengagement from digital technology still an option amidst the strong mantra of solving social, economic, environmental, and political problems with digital ‘transformations’ and ‘transitions’? Do people still have a choice? The view of older adults as ‘dependent’, particularly when monetary costs are associated with looking after them, is a strong driving force behind the push for the digitalisation of health and social care. This negates their own choices for their future whilst, at the same time, turning them into technology consumers, which benefits the economy. However, unchecked digitalisation here, and in other spheres of life, should not obscure the real needs and wants of people. Framing technology as a panacea to complex challenges faced by society and the planet runs the danger of providing cover for more deep-seated structural and systemic inequalities and injustices, inhibiting truly transformative, meaningful change.