Computer says share – ethical judgements about information sharing


Stephen Curtis,
Centre of Excellence for Information Sharing

On Saturday, I saw a double headline, front page news in the Daily Telegraph: “Security fears over GP records of 26 million patients… Doctors urged to switch off IT system that shares patients records”. My immediate reaction was about the impact on service users – could someone die as a result of switching off data sharing? An angle not covered by the Telegraph, although it does acknowledge that it would make it difficult to work with hospitals. However, it got me thinking about the range of issues that the article touches on.

In the article, a TPP (the company that make SystemOne) spokesperson was quoted as saying that practices using SystemOne must either “fully inform patients about who might be able to see their records, what parts of their records and in what circumstances” or “turn off record sharing”. In our work with places, there is an increasing focus upon public engagement around information and data sharing. It is increasingly acknowledged that this engagement needs to be meaningful i.e. couched in changes to services, and what it means for you, the person using the service.

This statement also pushes the responsibility to the practices for making the decision around informing patients, or turning off. Indeed, the theme about the difficulty of this decision runs all the way through the article. On the one hand, it is important to respect the privacy of the service user / patient. On the other hand (and this is not really drawn out), the impact of turning off could be critical to the lives of those people. How many headlines have you seen relating to serious case reviews where ‘information wasn’t shared’ resulting in (at best) poor service and (at worst) death of a person who should have been supported by public services? Much of our work focuses on this aspect of information and data sharing. Two recent case studies (Trafford Care Coordination Centre, Wigan Share to Care) focus on how this information sharing improves the provision of services.

The point is, that sharing of data is not simply a case of putting the IT system in place and turning it on. There is pro-active work to be carried out around engagement of citizens in how their information and data is to be used, both at an individual level, but also at a ‘campaign’ level. It also needs staff to know how to handle the management of data sharing, adapting working practices as required, and knowing how to communicate with people about how their data is going to be used. And new capabilities around use of data to identify patterns of need, and how to target communications when necessary. All this requires leadership around new service models that require much greater use of information and data, with decisions being owned in the business, putting in place all the required capabilities and safeguards needed to keep information and data safe and secure.

Elizabeth Denham, the new Information Commissioner summarised this eloquently in her speech at the 2017 data protection practitioners conference, “… let’s not lose sight of what good data protection can achieve. We have an opportunity to set out a culture of data confidence in the UK. We just need to keep in mind that when we lend our name to projects, we should think about how they can be of benefit to citizens.”

In modern public services, information and data sharing is essential. Sometimes we find ourselves on the back foot (as in Saturdays Telegraph article), because the technology or the operation of services do not match the needs and requirements of services to share data. We need the leadership, cultures and capabilities to manage better information and data sharing, engage and communicate with those who need our services, and make those professional judgements about what to safely and securely share, with whom, and the consequences of doing so.

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