We desperately need a digital patient strategy that treats health as an active task, argues Laura Fulcher
When I was a girl of six, I watched my father face cancer for a second time. I didn’t understand why he’d lock himself away until the darkest hours poring over equations – scribbles I’d find piled high on his desk the following morning.
In recent years I’ve learnt these calculations were his attempt to predict the following day: to understand what he’d need to do to make it a good one. In his own peculiar way, he was desperate for agency, searching out what little information he could find so he could act on it.
He was “ready to think what… (he) was doing,” as Hannah Arendt writes in her exposition of the Human Condition – ready to embrace the one source of miracles: action.
Key human themes – information-seeking, decision-making, and acting – were crucial to me during my own cancer treatment too. At a time of ill health, when powerlessness threatens to overwhelm you, it is just then agency is necessary most of all. It helps us deal with the fact that life, often, really hurts.
Yet sadly, the healthcare system just doesn’t allow for human behaviours. Agency is not possible when navigating the NHS.
During my 15-month wait for a cancer diagnosis, I had no idea when and where to go if symptoms didn’t clear up; no clue what services were available to me; nor any notion of the next steps towards diagnosis. My ignorance and lack of autonomy resulted in nine GP visits, multiple hospital appointments, endless scans and tests, and a very narrow escape from death.
You might reassure yourself I’m an anomaly. A sorry anecdote.
But within the 12,000-strong community of Mission Remission, the charity I founded for people surviving cancer, feelings of passivity and the consequent internalised frustration beat strong. Every day we hear stories of confusion, hopelessness, anger and self-hatred.
While Matt Hancock stressed the importance of “communication” at the Nuffield Summit, do you know how often this word features in the long-term plan? Just the once. Whoever writes health strategy has clearly forgotten what it is to be human.
So, where to go?
First, we need a new health language to form the life blood of all future strategy. We need a verb for health as an activity. While we learn, we eat, we bank, we shop, we work, we love, we parent, we live, we die… for health? There’s not a word.
The almost narcissistic fixation on “care” and clinical activity deflects attention from the far more health-defining behaviours of patients. Care, even the language of “personalised care” or “person-centred care” still drives the agenda of health as the duty of the doctor, not the activity of the sick.*
In the world of education, most learning occurs outside traditional schools – I know, I’m originally a secondary school teacher. Eating, thinking, talking, and loving are all learnt long before children reach us.
And the same applies to health: thousands of health decisions occur every day, all made without supervision from doctors. In fact, a small Twitter poll last week found most health learning occurs online, through social media, and in apps.
We need a word for this human behaviour of health, a word like “healthkeeping”, depicting people as active and health an activity.
The mistake of the current digital strategy for patients is that it rests solely on the drive to champion patient access to clinical data alone
And the first place to fix this is within a pioneering digital patient strategy, using the language of healthkeeping and humanising the world of health data.
The mistake of the current digital strategy for patients is that it rests solely on the drive to champion patient access to clinical data alone. The view of policymakers is that access to this data opens a magical door to “empowerment”.
But this access in and of itself is a reductive aim. We need to take a step further: to focus on how the data serves a purpose to people.
Being reminded of my date of birth, as far as digital services stretch for me currently, does not restore my agency. Nor does accessing information recorded for clinical purposes achieve this vague concept of empowerment (a word seemingly used because it’s so hard to define or measure).
“Healthkeeping” and humanising health data can be unpicked to feel far more tangible.
Humanise health data
To humanise health data, we need to be clear how it serves a purpose to individuals: how it can be used for decision-making and result in action. This is vaguely hierarchical – think of Maslow, or Bloom’s Taxonomy from the world of education.
On a basic level, we all need data that will allow us to inform and educate. “Am I normal?” people want to know. We need to understand what’s happening with our bodies and minds. What information is reliable and how can we be certain?
Next, health data needs to help navigate. To explain where we fit within the system. To answer questions like – what services are available on the NHS? What can we request? What are the next steps and waits in diagnosis and treatment?
We need data that facilitates communication, connection, and caring. People often worry about being that “pushy patient”, so you make the mistake of believing GPs psychically know the severity of the symptoms you’re experiencing.
And we’re so scared of being a burden, we don’t like to say anything at all. But the disconnection goes further than this – the health system isolates, medicalises, makes you feel you belong in a hospital bed.
People need information and tools to connect with other people facing their condition – often a far richer source than individual clinicians. And we all need to know our families are allowed to care and that we are caring for them too.
Further, we need data that can be used to reassure, self-comfort, to build confidence, and motivate. This data must help us feel the protagonist of our own story, not the subject of treatment.
Health data needs to help navigate. To explain where we fit within the system
The clichés that people use when facing ill health – the war imagery, the “winning” (and the “losing”) – this language is powerful for a reason. It helps us deal with emotions and feelings that can otherwise seem overwhelming.
Most importantly, we need data that helps us heal and frees us to embrace our agency. Health and care must not become barriers to life (as they currently are).
Humans don’t flourish in restrictive environments, nor when being told what to do. As Chomsky says, to develop all powers, capacities, and talents which nature has endowed us… we need freedom.
To achieve all this, we need a digital patient strategy that uses this language of “healthkeeping”, and not the language of the Victorian model of care.
A strategy that champions health data and tech that serves human actions – informing, educating, navigating, connecting, trusting, reassuring, self-comforting, confidence-building, motivating, healing… and all the other purposes that data might serve for all the other actions people want to perform across the country.
We desperately need a strategy that treats health as an active task. For only through action will people find hope.
*Ivan Illich’s Medical Nemesis is a great, if radical, read to explore more of the consequences of paternalistic health systems.