Authored article

Make your views heard about your health and care information

The National Data Guardian encourages a wide range of people to take part in the consultation about data security and consent/opt-out model.

Dame Fiona Caldicott

It is 7 weeks now since I published proposals to strengthen security around health and care information and to help people make informed choices about how their health and care data is used.

There is currently a consultation taking place on the proposals and I very much hope that as many people as possible will take this opportunity to have their say about the recommendations that I have put forward.

When I published my review in July, I was very encouraged to see the level of interest. I was also pleased that a wide range of organisations and individuals welcomed the review, including members of the public, researchers, clinicians, service planners and others.

I was glad that the government was able to launch the consultation on the day of the publication of my review. This was particularly important to me because a central recommendation is that much more must be done to engage members of the public about how their data is used and the choices they have.

During the review’s evidence gathering stage we spoke to many people. I was struck by how little awareness there is generally about the ways in which health and care information is used and safeguarded.

And yet, when you begin to talk to people about how information about their own treatment, illness and care can be used, many do show great interest. Once it is explained how pieces of information about individuals can be connected with information about others and then analysed, people see the benefits that can be gained.

They understand that such information can be used; by planners to identify which illnesses are increasing in frequency, and so what kind of services are needed and where. They understand that researchers might be able to see patterns, for example that one medicine works better than another for some people with a particular condition, but not others.

But many people are also quick to perceive risks to data sharing and we heard that people do expect their information to be kept safely. We also heard that there are some uses of health and care data – such as for insurance purposes or marketing – that the vast majority of people simply will not tolerate.

When formulating my recommendations, the views I heard from clinicians, researchers, security experts, planners and – most critically the public – were very important indeed.

Now I think that it is vital that these recommendations are put to the test. Great advances can be made to health and care through the use of data, but this can only happen if the public supports the way that the information will be used to achieve these benefits. The consultation currently underway is one step in what must be an ongoing conversation, about listening as well as speaking.

I hope you are able to take part and encourage others to do so too.

Published 26 August 2016