A story is not a luxury.
It is not an embellishment added once other needs have been met. A story is central. It is how we come to know who we are. It is how we declare our presence to others. It is how we resist being erased in systems that too often reduce us to numbers, diagnoses, or costs.
Over the last few months, I’ve had several discussions around data and technology, and the tensions that sometimes exist with the use of personal data and the desire for personal privacy and individual control. As a result, I have found myself thinking again about the question of who owns our stories. In an age where our lives are increasingly digitised, where our memories, choices, and even our preferences are stored in invisible clouds, the question of personal data has become more than technical. It has become moral and ethical.
Following on from those meetings and conversations I have been thinking especially about the stories of older people in our social care and support system. When I speak with older people across Scotland, I hear a recurring theme: a sense of losing control. Not simply over health and care decisions, but over information. Who knows what about me? Who decides what is shared, and with whom? Who holds the keys to my life?
But it goes even deeper than that – it is not just the data that others have of us. It is the sense that people like professionals presume they know the whole story of who I am. So, all this has made me think of stories in the fullest human sense and not the ones written about older people, but the ones they hold within- their own stories. Because far too often, those personal narratives are sidelined. Not intentionally. But gradually. Imperceptibly. Lost in a sea of forms, eligibility criteria, assessments and appraisals. We gather data but lose the person.
In one care home I visited this spring, a woman in her 90s looked me straight in the eye and said,
“It feels like everyone else gets to write my story. But I rarely get the pen.”
What an image – and it’s one that has stayed with me.
Who holds the pen?
Who decides what is written, what is remembered, what is shared- and with whom?
There is great dignity in holding your own story. To know that your memories, choices, and identity are not just scattered across the systems of State, the operating platforms of a software or care provider but gathered, safeguarded, and stewarded by you.
This, at its heart, is what lies behind the growing movement around Personal Data Stores. Platforms like MyDex, Solid Pods, Hub-of-All-Things (HAT), and so many others are not simply technical solutions. They are moral statements: declarations that the right to hold and control your own data is an extension of the right to hold and express your identity.
What MyDex has pioneered is not merely a secure place for personal data. It is a model for digital dignity- a way for people, including those receiving care, to collect, manage and consent to how their data is used. And more importantly, to participate meaningfully in decisions about their own life.
In the world of social care, where so much of our energy goes into managing information about people, we must I feel increasingly ask a different question: How do we enable people to manage their own information?
Not just because it’s efficient or innovative, but because it is just.
In recent months, I have seen inspiring work in Scotland and across the UK where communities, innovators, and care organisations are exploring models that place the individual at the centre and in the lead. These systems do not treat data as a commodity, but as a sacred trust. They build on the belief that to be human is to have ownership of your past, your present, and your future choices.
And this is where care and technology meet. A human rights-based approach to care insists that we are more than patients or residents, more than service users. We are people whose identity is bound up in the stories we tell, and the stories told about us. The secure cloud, then, is not just about firewalls and encryption keys. It is about respect, dignity, and agency.
And that is a challenge, not least because the technology and social care systems and the way in which they have grown up together and apart does not make the ability to retain control and agency easy. The language of digital care systems has been dominated for too long by compliance – GDPR boxes ticked, privacy notices drafted, systems encrypted. But compliance is not the same as ethics, and consent is not the same as participation.
A human rights-based approach to social care- digital, AI or otherwise- must begin with the understanding that older people are not a single demographic category. They are individuals, each with a story, each with values, each deserving of voice.
Yet policy documents still refer to “the elderly” as a bloc. Health interventions are rolled out to “the over 75s.” Service planning talks of “high-risk groups.” And such treatment of individual older people as a homogeneous group was palpably evident during the recent submissions to the UK Covid Inquiry where it because abundantly clear just how little focus was given to the individual as opposed to the ‘group.’ All such approaches mean that the nuance of identity, of history, of individual choice and decision, and of personal journey is flattened out.
There is a slow erosion of personal autonomy when we reduce people to policy targets. Even when we are aware of these risks and we talk of co-design and co-production, too often decisions are made far from the rooms where older people live their lives. We must do better. Not simply because it is good practice, but because it is just.
Autonomy is not just about choice. It is about voice. It is about having your story held in respect, not just your needs measured in minutes and tasks. When we take a human rights-based approach to care, we are not only ensuring that people are safe or well-fed or medically supported – though all of these are vital. We are affirming something deeper: that people have the right to shape the telling of their lives, to be authors still, even when age or illness might seek to steal the script.
When we fail to do so it is no wonder that people feel unseen.
Ethical software development in care must shift away from systems designed for people and toward systems designed with people. This is what Personal Data Store developers and others are exploring: the digital infrastructure that places the person not the provider – at the centre. Systems and approaches that understand that my data is mine, not the State’s. the social care provider or the software business.
But we must go further.
We must ask, not least as new Ai-driven software systems are being developed, whose knowledge counts in system design? Are older people being consulted, or simply processed? Does our software reflect the principles of dignity, autonomy, and rights?
Too often, digital care solutions are designed around efficiency, interoperability, and cost-saving- rarely around emotion, memory, or personhood. We need ethical innovation that is rooted in relationship, not just functionality. And that may mean that a thorough rights-based analysis and evaluation of what we are already using in care delivery, and what we may want to use in the future requires, some designers to go back to the drawing board and some packages to be made obsolete because they do not sufficiently protect the rights and ownership of the citizen.
The challenge ahead of us in social care is not merely technical. It is ethical, cultural, and narrative.
We must reclaim the importance of the personal story and individual autonomy- not as a nice-to-have – but as the starting point for every decision, every plan, every policy. We must hand back the pen so that people can write their own futures, not have them dictated by systems.
This is not sentimentality. It is justice.
It is time to design care – from analogue to digital, from bedside to browser- based on the belief that every person holds a story that deserves to be told on their terms. That includes building digital platforms that do not mine, manipulate, or monetise human lives, but honour, protect, and empower them.
Because the future of care is not just data driven. It is human-shaped. And it begins by asking:
“What’s your story?”
Then giving people, the time, space, and tools to answer.
And for those who say the systems are too far down the road to change tack, that people are comfortable with their data being accessed by others – then we need to be very cognisant of the fact that there is a sharp generational change happening around public attitudes to data in society, as well as in social care. If we want to prepare for that changed ethical perspective, then we need to start now.
Specifically, a growing volume of research projects and reports are showing us that younger adults, being more digitally immersed, are seeking personalisation, and actively asserting their data rights and thus appear more likely to adopt tools like personal data packs. So, the social care recipient of the near future will increasingly want systems and models over which they have greater control, agency and the ability to write their own story and decide who sees it.
In the end technology will always be a tool. It is our values- the values of respect, autonomy, and dignity- that will continue to matter the most. The future of care is not just digital or data-driven. It is human. And it starts with giving back the pen to the real authors.
I leave you with a poem from the American 20th century poet Maxwell Bodenheim which casts the inner world of the aging self as a place of memory and continuity, not decay. The “painted square” symbolises identity – the space where one’s thoughts, relationships, and stories live. It speaks deeply to the value of preserving and honouring personal narrative, especially as one grows older. It affirms that autonomy and identity endure, vividly and vulnerably, in the spaces where others might see only age.
Old Age
In me is a little painted square
Bordered by old shops.
I walk in these narrow places,
And hear the creaking of flesh that is still alive.
And outside, people pass,
Strong men with firm strides,
Women whose hair smells of scented leaves,
Children who forget to laugh too loudly.
Inside my square I am comfortable.
The old men sit smoking before the shops,
Their faces like neglected icons,
And they nod to me as I pass.
They are my thoughts, my reminiscences,
And each evening I return to them
With food from the present.
We talk of things long gone,
Of people who changed with the seasons,
Of women whose lips we kissed in forgotten cities.
Some evening I shall not return.
But the square will remain,
The old men still smoking,
Waiting for my cart of thoughts.
And someone else, in some other square,
Will pass and see them,
And wonder.
Old Age by Maxwell Bodenheim – Poems | Academy of American Poets
Donald Macaskill
Photo by jesse orrico on Unsplash
