Time for a Civic Community Data Bank?
In 1854 John Snow, a Yorkshire-born doctor working at the Westminster Hospital in London, was responsible for a discovery which is generally seen as one of the founding moments of the science of epidemiology.
As members of a democratic society we all contribute to the state in return for the provision of services that are most efficiently provided by the state. It is a persuasive argument to suggest that part of the deal; the individual should be prepared to allow the state to use data to support research and other “good works”. But as we have seen there is a difficulty in defining what the scope of that “good work” may be. Should a university research team discovering new insights into to a major global disease be able to licence the outcomes of their research to a commercial company for profit? And if they don’t, what is the purpose of creating that knowledge? How to monitise the value of that data insight and ensure that it is distributed equitably is one of the big challenges facing “big data society”.
No matter how logical and persuasive the argument for sharing data might be and the potential value that can be created as a result, ultimately it will be about confidence and trust which will be the factor that determines how that data is used.
As we know from our work and personal lives, trust is precious. It takes time to build, but the work of a moment to destroy. Those to whom we trust our valuable assets must maintain that trust and demonstrate their personal integrity. While coloured by individual high profile cases, nevertheless politicians and bankers are shown to be by far the least trusted professions, while doctors, teachers, professors and judges are the most trusted.
Opening a new bank
So how might we address this challenge?
Over twenty years ago I worked with a physician, Dr Bill Dodd. Bill often talked about the concept of a Health Information Bank – a place where people could deposit their health data for safekeeping, and withdraw that data when it was needed or give authorisation for others to withdraw that data for specific purposes.
Technology has moved on enormously since and some of the problems that Bill was trying to address about data sharing have solutions, but the issue about trust and safekeeping remains.
Perhaps we can look once more to the Victorians. The early years of Queen Victoria’s reign saw the rapid growth of the mutual building society and co-operative movements, particularly in the northern cities. People would put their saving into local building societies, trusting them to look after their savings, content that their financial assets would be put to good purpose for themselves and others in their town and at the same time generating a valuable return.
I wonder whether the time has come to look to the creation of a health data bank on a mutual or co-operative basis – a repository of health data which is held on trust for its members, working within a clear charter and with a set of trustees who will take responsibility for the use of those digital assets in line with that charter.
We could see a range of different data banks with different objectives. Some may have a very cautious charter, only allowed to share and reuse that data for clearly defined specific research purposes. Their investors would be motivated by altruism, prepared to have their data used for the benefit of society and not expecting a financial return.
Other institutions may have a more aggressive approach, allowed by their charter to go beyond the use of the data for clinical research, and selling packages of aggregated data for market research, thus generating a positive return on the data assets of their investors.
The most aggressive institutions might offer to resell data at a personal level but for an even higher price. For those who don’t mind signing away their privacy and are prepared for the consequences, this might be a price they feel worth paying.
Time for a civic community resource?
But I also wonder whether we could learn again from Victorians and the growth of civic society. Is there a place for the idea that a city that creates an independent “city community big data bank”, holding data for and about its citizens on trust and allowing it to be used only in accordance with a clear charter? A trusted third party which would collect, collate, curate and use that data for the benefit of its community of data investors, and which sought to maximise the social value that could be derived from the use of this data.
The city that takes such a bold step may become the game-changer. It is unlikely that it will be an existing institution that opens up the bank. The trustees will need to command the confidence of the community, and while local politicians will have a legitimate role to play in representing their constituencies, the emphasis should be on local community involvement with the aim of assuring trust and strict adherence to the data bank charter.
The consequence of inaction may be that commercial interests will seek to exert control of the data, knowing that data is the raw material of the knowledge economy and that in the rush for the data land grab, the fastest to move will be the winners.
We read much about the modern digital city of the future, but we may only achieve that future if we learn from our Victorian past and the efforts of people like John Snow.
About John Farenden
John Farenden is a Director in Ernst & Young’s Health Advisory practice in Leeds. John has worked in the field of health informatics for 25 years and has a particular interest in how disruptive informatics can help to improve health and social care services. The views in this blog are personal and do not represent the views of Ernst & Young.