This Daily Mail screamer was triggered when a nurse visited a frail older patient as part of a scheme to get GPs to identify their 2% most frail patients and draw up care plans for them to try and prevent unplanned admissions to hospital.
The nurse and the patient had never met but the nurse worked dutifully through the NHS England template form, which includes two questions about whether the patient wanted to die at home and whether she wanted to be categorised as ‘DNR’.
Witnessing all this was the woman’s son; who happened to be Roy Lilley. Understandably outraged, Roy wrote about the incident in his usual trenchant way on his widely read blog – with the result that the above story ended up on the front page of the newspaper.
No technology is value neutral
One lesson of this tale is that the technologies we use structure our intimacies. This is as true of old, paper-based tools as newer glitzier ones like Facebook or the electronic patient record.
The paper technology used here may be old fashioned; but it still poses a question of extreme intimacy (“Do you want to be ‘DNR’d”?) as a straightforward bureaucratic transaction.
There are good reasons for knowing the answer to this question; but it is almost impossible to ask it with sensitivity unless you know the person well.
For hassled staff, the form invites an implicit brutality (“Well come on then, do you or don’t you want to die at home? We need to know so we can organise your integrated care pathway”).
It is impossible not to embed values into technology. Twitter’s limit of 140 characters defines it as a medium – as night follows day, brevity is a core value.
Apple’s new HealthKit OS (the operating system that allows your iPhone to be used for health applications) operates on data held only on your device. No sharing of data in the cloud; so more individual, less social.
By contrast, Google’s Android health OS is cloud based; facilitating much more sharing of data but perhaps less security. Is this a good thing or a bad thing? Who knows? The point is that the technology is defining the choice on offer.
Given that technology always embeds a particular way of seeing the world, we should think carefully about the values embedded in our big ticket public-facing programmes, such as the Summary Care Record and care.data.
Here are three suggestions about how such programmes could embody some explicit patient-centred values.
One of the worries that patients and those concerned with information governance should have about the SCR is that record will be viewed inappropriately by staff.
So why not let the software of the record itself mitigate this risk, by notifying the patient which staff have viewed any part of their clinical information? This might say something like ‘Since you last logged in the clinical part of your record has been viewed by three people at your GP practice and two at the haematology department at Barchester General.’
Over time such openness would build trust, while also acting as a powerful deterrent to staff thinking of going on fishing trips.
Secondly, the current regulations governing what can be uploaded to the SCR ‘may be amended from time to time’ by the powers that be.
People may be happy for the present, uploaded data set of current medications, allergies and major current diagnoses to be seen by staff treating them for a major event miles from home.
But would they be so happy for a more extensive set of the clinical information that has already been thoughtfully Read-coded by their GP to be visible on their SCR? What about that episode of depression five years ago? Or that prescription for Viagra that was never used?
Of course we are not at this position yet, but one way to build trust around what is and what is not visible to others via the SCR would be to display all SCR information in a different colour within the patient’s online GP record.
This demonstration of what was in and out of scope for the SCR would fuel debate about what patients, as opposed to clinicians and managers, want to be included on the SCR.
Finally, let’s think about the values that care.data should embody. The main motivation for patients to share their pseudo-anonymised data is to improve care for everyone either through local planning or research.
So how could we reinforce this altruistic behaviour within the care.data infrastructure? One way would be to notify people every time their anonymised data had been used. For example, every time you logged in to your online GP record you might see something like:
‘Since you last logged in, your anonymised data has been used to:
- Plan care of people with heart failure by NHS Barchester Clinical Commissioning Group
- In a study by the University of Birmingham on the early diagnosis of heart failure
- As part of a national study by GSK developing new treatments for heart failure.
Thanks you for letting us use your anonymised data in this way. We are currently looking for volunteers to help us plan a new heart failure service in Barchester. Click here if you would like to be involved’.
Perhaps we are going to see such patient centred software in the SCR or care.data. But including the patient in this way adds friction for both professionals and managers. Patients are rightly going to be curious, intrigued, or inclined to know more.
They are going to ring up and ask why their records have been viewed by this particular person. Or object to that particular trial using their anonymised data. Which is of course exactly what ‘involving patients’ means.
I suspect that the Health and Social Care Information Centre and its clients at NHS England will opt for an easy life and choose not to ‘involve patients’ in this way.
And it is at precisely this point that you see that technology is not neutral. One set of values (managerial convenience) are being embedded in preference to another (actively seeking patient commitment to data sharing).
Sherry Turkle, one of the doyens of the sociology of the digital world, wrote: “Technology proposes itself as the architect of our intimacies.”
Those who develop care.data and the SCR have a great opportunity – and a huge responsibility – to protect and extend the communal intimacies that lie at the heart of the NHS. Get it wrong – as the appalling care.data debacle did last year – and we will all pay the price.
Paul Hodgkin is founder and chair of Patient Opinion, a website on which patients, service users, carers and staff can share their stories of care across the UK. Patient Opinion is a not-for-profit social enterprise based in Sheffield.
Until 2011, Paul also worked as a GP and has published widely including in the BMJ, British Journal of General Practice and the Guardian and the Independent. Follow him on Twitter @paulhodgkin.