The data revolution is being driven by data wonks. This must change!
The champions of data in healthcare are mostly people who understand data and who are excited by the potential of data but should they really be leading the charge?
The thing about data is that data in not the thing. Data, like money, has no value until you do something with it. It is the ways that we are planning to do things with data that we are least sure about. For now, at least, the champions of data and the people driving the data revolution are people who understand data and who are excited by data and the potential of data. The data revolution is being run by data enthusiasts. This needs to change.
The real power and promise of data is what it can do for people. In Scotland, for example, the Diabetes Collaboration Database, used to help manage the care of 288,000 patients, has led to a 40 per cent fall in local amputation rates.
This is wonderful for the patients avoiding amputations, but it is nothing compared to what will happen once we come to a better understanding of what we have to do to optimise the outputs and benefits that we will achieve by exercising data. Using data, not data itself, will transform the lives of larger and larger cohorts in ever more profound ways.
The people who should be banging the drum for what data can do and leading the charge should be the front line service providers who affect the daily lives of people at a practical level. And those charged with arranging policy at a local or national level should be working with these service providers.
In Birmingham University Hospital, for example, electronic prescribing data showed that only 30-40 per cent of patients received antibiotics within agreed time limits. When this was fed back, to front line staff, the proportion rose to 90 per cent, reducing the length of time that many patients spend in hospital.
It is a racing certainty that the nursing and prescribing staff who made these changes happen are more interested in, and knowledgeable about, patient care outcomes than they are about data and the transformative power of exercising data. And it is just as certain that those patients feeling the benefits have little understanding of how the benefits arose.
Getting the agreement of those who will provide their data is not easy, and it is too important to be left in the hands of data champions. Data enthusiasts are rarely very good at presenting the data/results to ordinary people, and yet it is to them that policy makers are turning to plan how we will get the data-advantage into our daily lives.
After a year long investigation, the Sowerby Commission, a group of experts established by the Institute of Global Health Innovation at Imperial College London with a grant from the Peter Sowerby Foundation, has concluded that there are major benefits to health from sharing records.
These major benefits will arise "Firstly" the Sowerby Commission says, "by ensuring all staff caring for a patient have access to details of their condition, medication and test results, and secondly (by improving) care for the whole population through audit and research - the results of which should be advertised to bolster public support."
The Commission is right in every way, but they have got the emphasis all wrong. Advertising results to bolster public support is too little, too late (in the journey), as well as wrong headed. There is a massive communications task needed to get the public to understand and embrace data driven benefits. A massive sea change in public attitudes is needed, and advertising some data in support of some other data will not do it.
The policy makers need to consult the communications experts or the troubled journey of the care.data initiative will be repeated in other initiatives and other arenas.
In the 1980s and 1990s the private sector came to understand that marketing communications was not a bolt-on to be applied at the end of the route to market. And now the wider public sector, including the health sector, need to understand that if you want your stakeholders to listen to your messages and then buy into your worldview, it is necessary to start by thinking about the communications.
Professor the Lord Ara Darzi, Director of the Institute of Global Health Innovation at Imperial College London, got it right when he said: " we need to do everything possible to protect the individual’s privacy, while explaining the good that sharing data can do for all patients". The word "while" is key. It means from the start and throughout.
When the first UK motorways were opened we were treated to a series of public information films on TV explaining how they worked and how we should behave. The future of data will change our lives in ways and to a degree that will make the introduction of motorways seem unimportant. We need a massive programme of public education so that we are all "doing data" not "having data done to us" by a handful of enthusiasts.
No integrated, prioritised communications plan/activity? No consumer buy in!
No consumer buy in? No data driven benefits!
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