Informing the public on information

Blog post

Published: 17/01/2014

Most of the services we receive nowadays (be it internet shopping, high street banking or health care) have a trail of data associated with them. We’ve come to expect that these trails will be used to help future interactions be more efficient for us and/or those providing the service.

This applies as much to public as private sector services – though we’ve also come to expect that the public sector lags well behind the private sector when it comes to IT matters.

In many cases this perception of the public sector is probably true (any luck making a GP appointment online recently?) but surprisingly few people realise how adept large public bodies like the NHS have become at consolidating their data and using it to improve the quality and efficiency of their services.

Even more impressively, in recognition of the fact that most of the time health care spans many different care providers, organisations are working together to pool their information (subject to strict controls to protect people’s confidential data).

It’s vital that we stress the robust governance when discussing the way data are used, but that shouldn’t be the end of the debate

This makes the data even more useful for researching the way services are used and how they can be developed to better meet the needs of their users.

While you may not have been aware of these processes going on in the background, you may well be familiar with some of the vital work that has built on it, such as:

  • Underpinning thousands of studies using clinical audits, disease registries and research data sets, which have led to demonstrable improvements in patient care;

These types of analyses are possible because patient-level data are centralised, de-identified and then made available to users (who must pass an accreditation process first).

These processes also allow an incredible amount of information (aggregated to service or area level) to be made available to the public; indeed the United Kingdom leads the world in this regard. It’s a shame we don’t celebrate this achievement more.

This week every household in England will receive a leaflet that describes the way health data are brought together. The timing is deliberate. From March, data from GP practices will be collated and linked to hospital records on a national scale for the first time.

As more and more data are linked in this way it is increasingly important that people remain informed about the way in which their data are being used to improve the services they receive. The leaflet also reminds people that they can opt-out of the system if they wish to.

But why would anyone object? People are understandably sensitive about their medical records, and particularly so about any suggestion that they might be disclosed. However, this is not the intention of the programme, and it has powerful safeguards to ensure personal details remain confidential. These include:

  • Any details that might reveal anyone’s identity (such as your name, address or postcode) are removed before researchers are allowed to access the data;
  • Access is subject to strict legal controls, covering requirements on data security and ethics;
  • It is all but impossible to re-identify anyone from the data provided to accredited users, and if there is any doubt further data items may be removed to ensure this;

These measures are important to assure people that their personal data are safe. It’s the presence of safeguards like these that have galvanised more than 40 UK medical research charities to support data sharing in the NHS and prompted us to join up with two other leading health care research organisations to welcome data sharing in the pages of today’s Telegraph.

It’s vital that we stress the robust governance when discussing the way data are used, but that shouldn’t be the end of the debate. The best way to encourage people to support data linkage is to identify and highlight the benefits everyone gets from their data being securely pooled.

The NHS does some of the most impressive data linkage in the world and the analysis it enables is ground-breaking. We should be more than aware; we should be proud.

Suggested citation

Blunt I (2014) ‘Informing the public on information’. Nuffield Trust comment, 17 January 2014.