I came across a Royal College of General Practitioners document recently – “Fit for the Future” – It is a vision of General Practice in the UK for 2030. There is a lot in it that I’d support but one of the statements is this –
An overhaul of the GP-patient record into a personalised ‘data dashboard’, accessible by healthcare professionals across the NHS, and that will draw on data from the patient’s genomic profile and wearable monitoring devices.
Now, maybe you read this and it excites you, but it made me stop and think “Hang on a minute! A ‘data dashboard’?”
I remember a line from the English philosopher, Mary Midgely, in her book, ‘Wisdom, Information and Wonder’.
One cannot claim to know somebody merely because one has collected a pile of printed information about them.
She wrote that back in 1989, and it’s clear that, since then, we have, to some extent, replaced the piles of printed information with hard drives full of data. But the point remains the same – you won’t know somebody just by looking at data.
One of my roles when I worked at the ‘NHS Centre for Integrative Care’ in Glasgow was to train young doctors in holistic practice. They’d be allowed to spend as long a consultation as they wanted with a patient then they would come to “present the case” to me. In other words, they’d consult their notes (often several A4 pages of notes) and tell me what they’d learned about the patient. At times what they actually communicated to me were detailed descriptions of the patient’s symptoms. Sometimes so many symptoms in such detail that the amount of information was quite overwhelming. By the time they’d finished I would find myself saying “Well, you’ve told me a lot but I don’t know who this person is'” I had no picture of the patient, their life, how illness came into it, how they’d coped, or the effects the illness had had on them, their family and their friends. A holistic case history is not a “pile of printed information”.
Data, or information, as Midgley pointed out, makes “much better sense when [it has] a context”. The context is revealed by the story. I don’t see how you fully understand a person without hearing their story.
Yet, one junior doctor told me she was being taught elsewhere “Never believe patients. They lie all the time. You can only believe the data” (meaning the results of investigations). That appalled me. What kind of Medicine can we practise if we think “patients lie all the time”? What kind of Medicine can we practise if we distrust their personal, unique stories, but trust only in “data”?
Now, I’m not saying that data isn’t useful. It can be. It would be daft to ignore that. But putting data up front and centre to the point where it replaces the relationship and the story? That’s my fear. That someone will think, “all we need is good algorithms and they will deliver all the right answers once we feed the data in.”
I’m sceptical. It doesn’t seem rational to me. It doesn’t seem realistic to me. And it risks shoving aside human values and the crucial importance of relationships.
Then, just yesterday the UK Health Secretary, Matt Hancock, put forward an aspiration for every newborn child in the UK to have their genome sequenced. Interestingly, a poll of doctors revealed – “>2000 responses. Only around 10% of doctors would find genetic data more useful than postcode in planning the care for a newborn baby.”
I think we have to claim the ground for the importance of the unique human story. If, as doctors, we fail to consider the environments and circumstances of an individual life, we will fail our patients.
Data without contexts has some use, but it is not a full understanding of, or even a “knowledge of”, a patient.
