NHS Data Sharing – II

What follows in this post is a very short summary of two of the NHS data sharing initiatives (care.data and Summary Care Records) which I wrote back in 2014 when they were new and care.data was still very much alive. I record this here in order to provide more background and clarity to my post of yesterday on NHS Data Sharing. This is unedited and provided in its entirety; note the date at the bottom!

Summary Care Records and Care.data
A Very Brief Introduction

By Keith Marshall, Chairman, Barnabas Medical Centre PPG, Northolt

The NHS currently has two initiatives to share patient medical data electronically: Summary Care Records and care.data. The two initiatives are very different. Let’s look at them.

Care.data is the initiative which was in the news a lot early in 2014, and is what was referred to in the leaflet which should have been put through your door in January 2014. It is about sharing aggregated data with a variety of organisations (public and commercial) to enable better healthcare planning and research. The programme will take GP and hospital records, remove or obscure anything which can identify you, and then merge all the records into a single national database. Any record which can identify you, as a patient, is not permitted to be shared outside the NHS. This is not new: hospital records have been used in this way for many years and the system is now being extended to include GP records. The intention is that over time this improves everyone’s healthcare by looking at where, and why, better outcomes are being achieved. The start of this has been delayed to at least Autumn 2014 in recognition that it has not been well communicated.

Summary Care Records [SCR] are different; they are about sharing data within the NHS for the provision of your immediate medical care. They will make your essential data (your drugs, allergies, drug reactions) available electronically to other parts of the NHS, but only when they need to treat you. So A&E and out of hours services can see your record if you need emergency treatment. This will mean you, as an individual, get better and safer care especially if you end up, unconscious, in A&E. Only healthcare staff with a special authorisation card and a PIN number will be able to access your data – just like you using your credit card – and if you are conscious and capable they must ask your permission at the time of access.

A very senior A&E consultant of my acquaintance, who works at a major South Coast hospital, recently commented to me:

Please think very carefully before opting out. I have just received my SCR access card, and it has been a revelation. Most elderly people are on lots of medicines and can remember about 10% of them. They turn up at my Emergency Department confused and unable to remember much. I can now get their medication list and their past history exactly and it means that they get much better treatment, especially with medications like Parkinson’s disease ones that are time-critical. I’m not saying that you are elderly and confused, but I am saying that you may be one day, and you won’t have opted back in. Is SCR secure? It seems no worse than the security to access my bank account.

Quite reasonably many people have concerns about the privacy of both Summary Care Records and care.data records. While we can never absolutely guarantee that security cannot be breached or abused, there is no reason to believe your data will be less secure in future than it is now.

Of course, you may opt out of one or other or both of these systems. Opting out of one does NOT opt you out of both. It is your right to opt out if you wish to do so – you just need to tell your GP. But please think very carefully before you do opt out.

Version 2 filed: 2 November 2014