Health and Social Care (National Data Guardian) Bill — House of Commons, 2018-07-06
Topic: Civil Rights
Michael Alex Burghart (Conservative, Centre-right): 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.