Health and Social Care (National Data Guardian) Bill

Alex Burghart Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Friday 6th July 2018 Commons Chamber

[Alex Burghart (Brentwood and Ongar) (Con)]

It is a pleasure to speak in support of this extremely important private Member’s Bill. To pick up where my hon. Friend the Member for North Devon (Peter Heaton-Jones) left off, data—data ownership and storage—is one of the big questions that society and this House will have to grapple with in the decades to come. I have noticed when talking to younger constituents how increasingly aware they are of where their data on social media goes and, most importantly, who the owner of that data is. Does the owner remain the subject of that data, or does ownership transfer to whoever is holding it? These are important conceptual issues that I am sure the House will have to continue to grapple with in the years ahead, and I am pleased that my hon. Friend the Member for Wellingborough (Mr Bone) has contributed to us moving in this direction.

I first had to come to terms with issues around personal data when I went into public policy research about 10 years ago. Two things became immediately clear. First, although the Government were collecting a lot of data on individuals, the way that they felt obliged to keep that data meant that they were extraordinarily bad at joining it together. We had very good information on children, for example, but rather lousy information on families. Building that context around an individual is absolutely vital if we are to build a decent series of research questions and answers that allow us to interrogate the causes of particular problems, or to see what positive influences in somebody’s life might have led them to avoid certain problems.

On a professional level, although the Bill does not deal with children’s data—children’s safeguarding is covered by different legislation—when I worked on child protection I saw powerfully the consequences of poor data sharing and safeguarding services. I read a large number of serious cases reviews that were published in the event of a child being killed or suffering serious harm, and time after time the findings of those serious case reviews were that agencies had failed to share data at key moments. Time and again, recommendations were made that better information sharing procedures should be created. We had a series of organisations which, albeit with the best intentions, were in effect working in silos, and by not working together they were missing opportunities to protect children, and in some cases to save their lives. That reluctance to share data was not laziness or professional neglect; it was often because agencies were scared of the potential legal consequences of sharing private information with other professional bodies.

[Mr Jim Cunningham (Coventry South) (Lab)]

The hon. Gentleman is making a good point. Over the past two or three years we have had this problem of child abuse and so on. One thing that struck me is the fact that agencies do not co-operate with one another or share information in the way they should. As a result, something that could be prevented is not prevented. Does the hon. Gentleman agree?

[Alex Burghart]

I absolutely agree, and I am grateful to the hon. Gentleman for that important intervention. If we create a framework that helps agencies to share information about vulnerable individuals safely, that enables those agencies to become greater than the sum of their parts, and to combine and enhance their professional interrogations, so that they can join the dots and create a true picture of what is happening in someone’s life.

As I saw earlier in my career, however, if done incorrectly such an approach can be taken to dangerous lengths. In about 2008-09, the Government proposed to create a service for children called ContactPoint. The programme was well intentioned, and it intended to bring together all the information on all children in one single place. However, it would have given access to that information to around 350,000 professionals nationwide, and civil rights campaigners immediately became concerned that that would effectively put all information about all children into the public domain, that it would not take long for that information to be out in the public space, and that once there, the process would be irreversible.

Today we are seeing exactly the right civilised and sophisticated approach to data handling. As I understand it, the National Data Guardian will work with professional bodies to ensure that they understand what they can do. She will be in a position to work with the public and ensure that they understand how their data is shared, and how it might be shared in future in order to improve services. Like my hon. Friend the Member for Wellingborough, I believe that the National Data Guardian will ultimately help people to choose whether they want their data involved in this sort of analysis.

I draw the House’s attention to a very significant initiative taking place in New Zealand. Using this sort of sophisticated data handling arrangement, the New Zealand Government have built the Integrated Data Infrastructure, which brings together pretty much all public, and some private, data held on individuals. It combines it by creating unique identifying numbers for each individual, taking out their names so that all records become anonymous, and then matching the data. This is done in a way that prevents track-back to the individual, while allowing large amounts of interconnected and complex data to be analysed by researchers, so that they can better understand the causes of social complex problems and how it is that some individuals with similar characteristics do not suffer from the dangerous long-term outcomes that some of their peers do.

This is groundbreaking stuff. The fact that the New Zealand Government have managed to do it in such a way as to take the public with them to create a world-class research resource gives us all hope that it can be done. When I talked to the people who lead the project in Wellington, I asked them how they got over the public’s concerns. They said that when they first took it to public consultation a lot of the public said that they rather assumed their data was being used for decent purposes already and found it very strange that their private data was not being used anonymously to solve the big health questions and social problems of the day. Yes, they wanted guarantees that their private information would not end up in the public sphere, but they said, “For goodness’ sake, get on with it.” I think there is a very important lesson for us all in that.

I very much hope the Minister will take a moment or two in her remarks to reflect on how the National Data Guardian may be able to help us in our jobs as MPs. As Members, we often have to handle sensitive information, and we are often responsible for the exchange of sensitive information. I therefore believe the National Data Guardian will perform a service to this House in due course. I am absolutely delighted to support the Bill.