In hospital wards and GP practices, dialogue between staff and with patients is far more important to quality care than big data, says David Gilbert
The debate about Care.data is fiery. The scheme, whereby data about individual patients held by GPs is aggregated and passed on to others who can then undertake research, has people at loggerheads.
‘The yea sayers argue that the NHS is “flying blind” if it cannot have access to vital data about our health habits’
Proponents of the scheme argue that access to this crucial data about health conditions and treatments will be a powerful tool for ensuring better research and improved healthcare. Those who are against it say that safeguards around confidentiality are insufficient, that researchers (including pharmaceutical companies and insurers) could de-anonymise data and use if for their own nefarious ends.
Powerful assumptions made
However, there is another way of framing this debate. It is the assumptions being made that I want to explore here.
The yea sayers argue that the NHS is “flying blind” if it cannot have access to vital data about our health habits. The metaphor is striking and rests on several levels of assumption. First, it invokes a sense that we are flying – itself a powerful metaphor about a potentially dangerous situation.
Second, it is redolent of impending catastrophe – we will only be safe if we regain our sight. And how are we to regain our sight?
The third and crucial assumption is that only through gathering more and more data are we to “land safely”. The metaphor turns on a way of seeing the world; a lens through which NHS England (and others) views what needs to be done.
I think that current approaches to quality improvement and patient and public engagement are largely based on this technocratic mindset and approaches that overrely on gathering data.
We have mechanisms galore for gathering information but often this does not have much of an impact on decision making. In my view, this is largely to do with the fact that it is “professional” leaders who make decisions without recourse to patients as part of the decision making process.
In a reductionist data-driven model, people are seen as chunks of information; data sources to be provided to the system, so that professionals can decide what to do about things. This strategic level approach seems to mirror what often happens in the doctor-patient relationship – patients are seen as a bundle of symptoms.
An alternative is to see engagement as involving the whole person and their relationships. It is also about people having a fair say in decision making. We see healthcare organisations not as mechanical systems, but as living systems comprised of people. In our model, it is not data that is missing, but meaningful and transformative relationships. Without those relationships, we are also flying blind. In a way perhaps, NHS England has got the right metaphor for the wrong reasons.
Critics of the scheme, including me, also argue that the approach assumes patient passivity (through an opt-out rather than opt-in policy) with communication efforts focused on allaying irrational fears. This feels like a “doctor knows best” model. This seems at odds with the patient and public voice agenda. On the other hand, proponents of the project argue that this policy breaks open the culture of paternalism that prevents true accountability.
‘I believe that Care.data is merely the latest in a long line of policy decisions that has been made “for us, without us”’
It seems that both sides are touting themselves as the voice of the people. In my opinion there seems little evidence of any serious patient and public engagement in the way the scheme has been designed or rolled out.
The Centre for Patient Leadership has long argued that patient leaders should be one leg of a three-legged stool in decision making; they should be equal partners with clinical and managerial leaders when it comes to deciding on health policy and practice. I believe that Care.data is merely the latest in a long line of policy decisions that has been made “for us, without us”.
But there may be a deeper reason to question the scheme: it might not help.
Drowning in data
Last week I met two busy members of staff at a hospital, one a nurse and head of patient experience, the other a lead on quality improvement and transformation. Both complained that they had plenty of data – indeed, that they are drowning in it.
Their issue was how to have difficult conversations with people about change. Services need improving at a time when money is tight, staff are demoralised, complaints about staff attitudes are on the rise and patient groups seem adversarial. For them, providing more data for central agencies to mash up would seem a waste of time.
What they said they wanted was to develop sustainable relationships between staff, and between staff and patients. In the real world of the NHS and patients, dialogue trumps data. Without it, we are all flying blind.
David Gilbert is co-director at the Centre for Patient Leadership