Data Protection Bill [HL]

Baroness Neville-Jones Excerpts

Report stage (Hansard - continued): House of Lords
Monday 11th December 2017 Lords Chamber

Moved by

[Baroness Neville-Jones]

24: Schedule 1, page 118, line 33, at end insert—
“Processing by patient support groups
(1) This condition is met if the processing—(a) is necessary for the purpose in accordance with the conditions listed in sub-paragraph (2), and(b) is necessary for reasons of substantial public interest.(2) The processing is carried out— (a) in the course of its legitimate activities with appropriate safeguards by a foundation, association or other not for profit body with a patient support aim, and(b) on condition that—(i) the processing relates solely to the members or former members of the body or to persons who have regular contact with it in connection with its purposes, and(ii) the personal data is not disclosed outside that body without the consent of the data subjects.”

[Baroness Neville-Jones (Con)]

My Lords, I introduced the same amendment in Committee and do not intend to repeat what I said then. I am glad to say that, since I put down that amendment, there has been a very helpful meeting between DCMS officials, the Genetic Alliance UK and Unique. I very much hope that that meeting will form the basis of a solution on which we can build for Third Reading. I thank my noble friend the Minister for his personal contribution to the progress that we have made.

My understanding is that at that meeting it was accepted that an amendment would have to be brought forward to ensure the legality of the work of patient support groups. My understanding also is that the Government would prefer to do this by their own amendment, and I am certainly very happy to accept that. I also hope that it will be possible to agree such an amendment before Third Reading.

My noble friend has said that he is concerned about defining the scope of the amendment. I certainly accept that that is a legitimate issue. The family of patient support groups is quite large, but I accept that it is right to prevent any amendment becoming a loophole for evasion of the Bill’s provisions. I am conscious of that issue. However, the purpose of the amendment is not controversial and I am happy to look to finding words and drafting that will both safeguard the points that we want to make and provide the right scope for the amendment. It would be highly desirable to be able to deal with this matter in our House.

I hope and trust that my noble friend will be able to confirm that he shares my understanding of the point that we have now reached and that he will be able to give me an assurance at least of best endeavours to present a government amendment at Third Reading. I might say that Genetic Alliance and other patient support groups stand ready to help in any way that they can to meet this deadline.

[Lord Clement-Jones]

My Lords, I will speak briefly to support the noble Baroness, Lady Neville-Jones, in her amendment. Clearly, this is of great importance to patient groups. I very much hope that the Minister will carry on the good work and come back at Third Reading with something substantive for the benefit of patient organisations that collect vital health information from their members, so that they will not be required to destroy or anonymise data. Without amendment, the Data Protection Bill has the potential to seriously damage the work of these patient support groups and hinder the work of certain public agencies, too, such as Public Health England and NICE—so I very much support the noble Baroness.

--- Later in debate ---

[Lord Patel]

Before the Minister sits down, I thank him and his team immensely for taking on board the concerns that I and others expressed about the interventional medical research that the government amendments will now allow. It cannot be overstated: this will now allow important research, including clinical trials, to be undertaken that will advance medical research in the United Kingdom, making it an attractive place to do such research. I thank him immensely; I am most grateful.

[Baroness Neville-Jones]

My Lords, I am extraordinarily grateful to noble Lords who have spoken in support of my amendment, and for the comprehension that the Minister has shown for the work of the patient support groups. They will have greatly appreciated hearing how much the Government support what they do.

I very much hope that we can work on an amendment that will both meet the Government’s concerns and effectively cover the work of those organisations, which, as I think the Minister understands, work in difficult circumstances. They stand ready to participate with the Government in getting language that will both cover their concerns and ensure that we do not open the door to those for whom it is not intended. On that basis, I beg leave to withdraw the amendment.

Amendment 24 withdrawn.