My journey in health and social care spans over 15 years, nearly 11 of which I’ve proudly served as a Trustee for C-Change (Scotland). At a recent board meeting, I was moved by stories shared by individuals, their families, and personal development workers. Their testimonies vividly illustrated the life-changing impact of the self-directed support model and a human rights-based approach, guided by the PANEL principles (Participation, Accountability, Non-discrimination, Empowerment, Legality).
This insightful experience was in contrast to reviewing the significant challenges faced by care providers in our current political and economic climate. Yet, amidst these pressures, I witnessed the truly innovative ways providers are tirelessly working to ensure compassion, quality of care, and remaining human first, paramount. It was an uplifting reminder that kindness and hope are prevalent with incredible strength and depth within our local and global communities. This meeting remained with me in the following days, compelling me to share my thoughts on a human rights-first approach to HealthTech in the UK. In an era of increasing demand, fiscal constraints, and an ageing population, it’s not just an aspiration but an urgent necessity to fundamentally rethink how technology serves care.
Amplifying human voices: the core of rights-based care
The true measure of any care system hinges on the well-being and empowerment of the individuals it serves. As powerfully demonstrated by the impactful work of C-Change (Scotland), positive outcomes are directly linked to approaches that prioritise the individual’s dignity, choice, and control. When care is truly human-centred, digital technology can amplify these voices.
Imagine a future where every individual possesses a secure, person-centred digital profile — their ultimate tool for autonomy in care. This digital space would seamlessly integrate information from health, social, community, GP, and even pharmaceutical services, providing a truly holistic view. Individuals would effortlessly control their health preferences, manage care plans, communicate needs, and grant granular consent for information sharing, actively bridging fragmented services. This isn’t just about efficiency; it’s about enabling self-directed support at scale, allowing people to proactively shape their own care journeys based on unique needs and aspirations. Informed by real-world validation of person-centred support, this confirms digital technology’s transformative potential to bridge the gap in accessing up-to-date information right at the point of care, providing a holistic view that empowers both care recipients and providers. Ultimately, every technological advancement must foster greater autonomy, reduce fragmentation, and ensure care is responsive to individual circumstances, truly reflecting the voices of those who receive and provide care.
Navigating a challenging landscape: the imperative for digital transformation
The UK’s health and social care sectors face immense pressures: persistent skill shortages, reliance on family carers who effectively subsidise the system, a fragmented landscape of legacy technologies, and significant disconnects between health, social, and community care providers, including GPs and pharmacies. Coupled with economic strains, increased use of private care for those able to afford it, while benefit system cuts to those who can’t, the entire landscape is hugely challenging.
In this context, while there’s a strong drive to innovate with AI, smaller, agile solutions from SMEs often struggle to address pervasive structural issues. Public procurement systems, driven by risk aversion, frequently favour large, established companies that may inadvertently preserve the status quo, consuming significant public funds without delivering the fundamental transformation needed. The essential action to enable speedy data sharing experienced during the COVID-19 pandemic, followed by a reversion to legal bureaucracy, further underscores the systemic barriers to achieving truly integrated, seamless care.
National imperatives: building a rights-based digital future
Despite these hurdles, the commitment to a human rights-based approach to care is increasingly embedded within UK and Scottish policy and legislation, providing a strategic imperative for genuine digital transformation:
- Scotland’s Human Rights Bill: this landmark legislation will incorporate key UN human rights treaties into Scots Law, placing new duties on public bodies to embed human rights in service delivery.
- The UK Human Rights Act 1998: already in force, this Act requires all public authorities, including NHS organisations, to respect and promote human rights in their operations.
- Scottish Digital Health and Care Strategy: this initiative emphasises using data and digital technologies for wellbeing, focusing on citizen engagement and person-led care.
- UK Integrated Care Systems (ICSs) & Health and Care Act 2022: these foster integration across health and social care, aligning with principles of reducing inequalities and improving population health.
- UK social care reforms: ongoing discussions highlight the need for a system that supports independence, leverages care technology, and enhances data sharing, explicitly valuing the voices of disabled people.
Envisioning transformative care: characteristics of effective digital solutions
To truly align with these national frameworks and address the complex challenges within health and social care, digital technologies must embody specific characteristics. Solutions must aim to deliver measurable impact for individuals, families, and the wider system by facilitating seamless integration with existing structures. This means creating transparent and secure data flow, enabling operational alignment, and moving towards proactive and preventative care based on comprehensive information. This will also require innovative partnership models between public and private sectors, embracing shared risk and reward to tackle the significant funding challenges and accelerate progress.
Ultimately, the most impactful digital tools will be those that are:
- Person-centred and co-designed: developed collaboratively with those who use and deliver care, ensuring they meet real-world needs and preferences. This also means supporting family carers, not just placing the burden of care upon them.
- Fostering human connection: recognising that loneliness is as profound a threat to health as smoking, technology must actively support relational working and human connectedness. Prioritising this is as crucial as achieving economic or labour efficiencies.
- Ethical and secure: a focus on data privacy, security, and upholding human rights principles in their design and deployment. This requires moving beyond a fear-driven bureaucracy to a trusted, purpose-driven approach to data sharing, learning from the agility shown during the pandemic while retaining strong safeguards. Building public trust through transparent practices and demonstrating tangible benefits will be paramount.
- Interoperable: capable of seamlessly exchanging information across diverse systems (including health, social care, GPs, pharmacies, and community services) through open standards to create a holistic view of an individual’s care journey. This directly tackles the problem of disconnected providers and disparate products.
- Inclusive and accessible: designed to overcome digital divides and cater to a wide range of abilities and circumstances, ensuring no one is left behind in the digital transformation.
- Scalable and sustainable: not just successful pilots, but solutions with clear pathways to scale nationally, integrate with foundational platforms (like NHS FDP or Scotland’s NDP), and offer long-term value for public investment, moving away from short-term, expensive contracts that preserve the status quo.
By championing digital transformation with these characteristics at its core, and by backing approaches co-designed with providers and supported by national innovation partners, we can confidently move towards a digital care model that is not only innovative but fundamentally inclusive, ethical, and sustainable, ensuring that in the age of digital transformation, humanity truly comes first.
What are your thoughts on how we can accelerate this human-centred digital transformation?