Quite understandably there has been some concern amongst readers in connection with the Government’s proposals to share patients’ personal records. So we thought we’d find out more about what exactly is being proposed by the Government and the NHS, what the implications are for individuals and what can be done, if anything, about it.
What is happening?
This will become a little clearer to everybody in the near future as you will receive a leaflet from the NHS entitled ‘Better information means better care’ – this leaflet essentially explains that the NHS is upgrading its data systems in the Autumn, which means it will be updating how it stores information about you, its patients, what information it stores, where it stores it, who will have access to it and what it is used it for.
The database is intended to store information relating to people’s medical records, including past illnesses, the medications prescribed, as well as weight and blood pressure information.
But is this new?
The project might be, but the fact is that the NHS has been collecting and using data on patients it treats for many years. Since the 1980s it has been collating information about every hospital admission made nationwide and has been using this information to compare the safety of different NHS hospitals, monitor trends in different diseases and treatments, and to plan new health services.
So why the change?
As the system stands at the moment, only data from hospital admissions is collected and analysed. This means that all data stored by, for example, your GP, or Community Health Service, is not included and the fear is that administrators know worryingly little about how all the different parts of the NHS are working together to provide what they call ‘safe, joined-up care for patients.’ They state that the aim is ‘to bring together all of this missing information in order to obtain a more rounded and more complete picture of the care being delivered by the health service.’
Supporters of the project, which is estimated to be costing upwards of £50m, say that it will improve healthcare in the UK by increasing the understanding of the health needs of everyone and the quality of the treatment and care provided. It also has research benefits – the information can be used to help support studies that identify patterns in diseases, responses to different treatments and the effectiveness of different services.
How is data about me collected and stored?
Information is collected and held at the Health and Social Care Information Centre (HSCIC), which is a public body based in Leeds. It was established in 2013 and is the central source of health and social care information in England. With effect from Autumn of this year information from GP practices will be brought into HSCIC and will be added to that already held. Additional areas of the health and social care system will be added to the database over time.
Should I be worried about my privacy?
The information that is collected on you will be identifiable using your postcode and NHS number and this is how it will be held in the secure database. However, when information is made available to others, personally identifiable information will be removed – the HSCIC conforms fully to the requirements that are laid down by the Information Commissioner’s code of practice on the storage and usage of data. So, the answer to this question is no – you shouldn’t be worried about privately sensitive information being made freely available.
But how can you be sure?
Well, the simple answer is that we can’t. This is a new system that is being introduced with the utmost regard for the privacy of the individual and the information that is stored as its central tenet.
However, as we all know from the many stories we read in the media, information systems cannot be guaranteed to be 100% safe all of the time and the NHS does not exactly have a spotless record in this regard.
In fact it’s quite the opposite – official figures show that since the start of 2011 the NHS has registered in excess of 2 million serious data breaches – that’s a staggering figure.
By Patricia Vine