In our quest to provide ever more personalisation of messaging and pathways to people, it is essential we remember that data is at the heart of delivering this.

It is relevant here to think of how the amount of data has grown over the years from discreet sparse diagnostic data within EMRs which were at the basis of billing systems to a much more comprehensive assessment of symptomatology as well as diagnostic information supplemented by laboratory and imaging data.

This however is merely the start of the journey. We now are in the realm of “omnidata” – where the amount of data which is at present able to be collected using our mobile devices, let alone wearables, is of significantly greater proportion than the EMR data and some would say even more relevant. If we then consider the value of data associated with “electronic payments” this is of even greater relevance as now one can really paint a picture of how one spends one’s time, as well as the nature of one’s diet, their wealth, and a whole load of other parameters that make up most of the constituents one needs to effectively assist the design of personalised pathways.

Having this deluge of data is of course essential but as essential is devising ways to assimilate it in a meaningful way and this is where interoperability plays a major role, once one has come to grips with the structure of the data – as the quest to achieve an ontology which delivers a common data model is required if one is then to use the data to achieve insights – and for whatever model of AI to be applied to this.

The time is coming fast when we also need to rethink our use of definitions. We still talk of secondary use of data in a world where it is inconceivable that data is only used once . Thus the term “secondary use” could perhaps be thought of as more “foundational” in nature. Data will continue to be collected and continue to be used for a multitude of purposes and this is what gives us all cause for celebration , but also cause for concern if it is used without our consent or used for purposes which are not necessarily one we support.

At the heart of this debate is of course trust. This is not simply about finding ways to use GDPR more effectively but more about the need for the users of data and the people whose data it is about, having open and detailed discussions about what the data should be used for and what it should not. Legislation is a blunt instrument and often leads to unexpected consequence. It is not just through legislation that we will get to the place we need to where the interchange of data for the benefit of people can go ahead unhindered. Dialogue about these difficult subjects is long overdue. It is critical to be radical – about time we had these now.

– Dr. Charles Alessi,
Chief Clinical Officer of éditohealth and Steering Committee member of Radical Health Festival