The caring side of data
I have become a victim of data or at least I have succumbed to the world of fitness data. Last year I was given a Fitbit and started using it in the autumn. I wasn’t aware of the massive advertising campaigns behind the Fitbit which is basically a cloud-based fitness-tracking device. But according to the advertisements this small device – with a little help from myself in the form of walking and sleeping more (though not together) – will enable significant life-quality changes. I will leave for others to decide the truthfullness of that statement viz-a-viz my waistline. But what I have been astonished by is the sheer amount of data that I am sent every week from this small device which sits on my left wrist everything from my average heart rate, my calories burning, my steps walked etc.
There has been an obvious shift in the data available to us about our own health in the last few years. I remember the early devices which enabled you to track your blood pressure or heart rate but what we now have is an empowerment of the individual, what some specialists have called the ‘democratisation of self-care.’ My device can now be used to adjust, alter and direct my behaviour – I have control and choice in its applicability and use. There is therefore huge potential in the realm of preventative health and self-care.
The accumulation of statistical data indicates a shift of legitimacy and power from the medical expert to the individual.
Many of you will be familiar with the concept of Big Data – defined as:
extremely large data sets that may be analysed computationally to reveal patterns, trends, and associations, especially relating to human behaviour and interactions.
But it is not the size so much as its applicability to determine trends, behaviours and patterns for whole populations that has become significant for social scientists and planners. This has especially become the case in the world of health. In some senses the data information I get and which is produced by my Fitbit gives me ‘Small Data’ –
‘data in a volume and format that makes it accessible, informative and actionable. … Small data connects people with timely, meaningful insights, organized and packaged – often visually – to be accessible, understandable, and actionable for everyday tasks.
So what is the place of such Data, Big or Small, in social care?
One of the issues facing those of us who work in social care is that we need to take a greater degree of ownership of the data and the debate about data – we cannot leave this to technicians and data analysts alone but must increasingly work in partnership to enable a shared determination of what data can do to enable better outcomes for individuals who use and seek to access services. Data has a tremendous potential to advance care and improve health but it is one which has to be managed and to some extent controlled.
So much of our world is being increasingly defined by an analysis of numbers, statistics and data. Are we making the right decisions from that data? Is the picture of our health and wellbeing which is painted, a true one? Just as we get suggested reading from an Amazon account or Tesco might determine what it offers us in our shopping trolley from what we have bought before – are we sufficiently aware of the streamlining of choice as a result of someone else’s analysis of our data? That may be an issue for my shopping but it becomes a critical one if data becomes a key determinant of health and social care choice.
There is therefore an important ethical debate to continually be held about the use of both Big and Small data which necessitates an awareness of the ethics behind not just the use of technology which has been much articulated but the ethics of the use of health and social care data both individually, at community levels and wider society.
Other fields are much further ahead in exploring the use of Big Data in transforming the way we do things, especially education. There is clear potential but we have to guard against a whole-scale adoption of approaches that will serve to unhelpfully alter our care landscape.
Next month sees the first ever conference to be held in Scotland which will explore some of the ethical and social science questions behind the use of data in Scottish society. This Edinburgh Data Summit is part of DataFest17 and will hear from international thinkers. But its debates and the messages which come from the conference will doubtless shape our response to data. Those of us involved in policy development, in preventative care, in empowering choice and control over health and care; those of us working or caring in care homes and in communities need to be alive to and aware of these debates.
Donald Macaskill (Dr)