Bulletin – July 2016

A New Government…

We wait to see what will happen with Theresa May as Prime Minister, and her appointment of Ministers. The Home Secretary focuses on national security – the Prime Minister will focus on what is in the wider national interest.

The Conservative Manifesto said: “We will give you full access to your own electronic health records, while retaining your right to opt-out of your records being shared electronically”.

Will this be done, and will this be seen to be done?


…but the spirit of care.data continues?

In the overview of her recent report, Dame Fiona Caldicott quoted the (then) Health Secretary saying: “Exciting though this all is, we will throw away these opportunities if the public do not believe they can trust us to look after their personal medical data securely. The NHS has not yet won the public’s trust in an area that is vital for the future of patient care’”.

As such, we’re disappointed in the “keep going” approach of the Department of Health. These are issues covered in the current public consultation, so aren’t on the immediate in tray of new Ministers. We’ll cover details next time.

Care.data was the spark that created widespread interest, but the fuel for the fire was the surprising data uses much more widely. Adding a care.data nameplate just showed that the data governance emperor was naked – with the health data of everyone on display.

Snuck out in a long announcement, the care.data name has gone, but the plans continue as they were originally designed back in 2013.

A simple name swap for the same goal might have worked with the last Prime Minister; we’re not sure it will work for this one.

Patients should not be surprised by what happened with data about them. Will the surprises continue?

What’s next?

If, as Recommendation 11 says, that “There should be a new consent/ opt-out model to allow people to opt out of their personal confidential data being used for purposes beyond their direct care. This would apply unless there is a mandatory legal requirement or an overriding public interest.” – then that must be true.

The new focus on the use of doctors and trusted individuals to explain the arrangements to patients are important. As care.data showed, what they say has to be true to avoid great harm to those relationship. The researcher community was burnt supporting care.data, hopefully they will not do the same thing twice.

Government promises being explained by your doctor will mean those who make the promises will have no ability to ensure they are kept.

We’ll cover the details of the consultation in the next newsletter, and how you can respond to say why promises made to you should be kept.

Government may want doctors to make promises to patients, but it will remain politicians and accountants breaking them.

We’ll be here.