UK Parliament / Open data

Care Bill [HL]

Proceeding contribution from Lord Owen (Independent Social Democrat) in the House of Lords on Wednesday, 7 May 2014. It occurred during Debate on bills on Care Bill [HL].

My Lords, for those who have not been in the debate I will try to deal with the specific responses from the different speakers. First, perhaps I may deal with the response from the noble Lord, Lord Lester. I agree very much with what he said. I believe that the European Court of Human Rights and the human rights legislation, coupled with the privacy Act, do enough to safeguard confidentiality and privacy. With respect, however, that is not what this amendment is essentially about. This amendment is essentially about

how you release those documents, what the procedures and mechanisms are, and what the criteria are for release. That is what is so very sensitive at the moment. That is why we need the reassurance of outside scrutiny not only over NHS England, which is effectively a quango, but also over a matter as sensitive as the regulations that might come from the Secretary of State.

In his speech, the noble Earl, Lord Erroll, reminded us of the complexity of this issue. In fact, the issue is geared into a lot of the technology and science of how one collects this information. As for the noble Baroness, Lady Campbell, she warned us seriously about what is likely to come out of Europe, which could have profound aspects. I believe that legislation is coming. However , the key issue is what the noble Earl, Lord Howe, said in his speech. With his characteristic courtesy, he had already given me an indication of how he was likely to reply. Those who were present earlier will remember that I did not try to summarise his views; I thought it was more important that the House should listen to them. I listened as carefully as I could, and I do not want to be churlish about this—what he said was important and will give some comfort to people outside. He said that he was sympathetic to the desire to put an oversight panel on a statutory basis and I very much welcome that. He also referred to how Dame Fiona Caldicott was uniquely well placed to be the chairman of this body and, by implication, a new statutory body. I think that all the contributions from both sides have agreed on that issue.

The noble Earl said that there may well be merit in establishing the existing panel and went on to say that in his conversations with Dame Fiona, she said that she would look first at the question of statutory underpinning and then at it in terms of the relationship. The problem, as I explained to the noble Earl this morning, is that I should like to have a letter from the Secretary of State committing himself to that. Those of us who have been in government know that the time of the legislative committee is very much fought over: everybody wants to legislate but time is short. An unequivocal commitment to legislate would be necessary for me to withdraw this amendment, but, with respect, we did not get one. We got a lot of sympathy, and I hope and believe that legislation will come. I even hoped that the noble Earl would say, “The Government will be neutral. We are not taking a position. Let it go to the Commons and let’s see what the Commons view is”. I think that that would be helpful and would give him more time to build a consensus around the pattern and form of legislation.

If the House does not mind, I would like to ask for its agreement to this amendment—in the spirit that I believe that it would do a lot to ease the current suspicion and distrust over the whole issue of medical data, patient data and hospital data. I say to those who did not hear the speeches that no one in this entire debate has questioned the absolute importance of these data: they could be crucial for this country’s future in the biological sciences and in pharmaceutical research. If the issue is handled properly and with confidence, I believe that we can ensure that the number of those opting out—which is a natural right—will be very small. As long as the number of those opting out

remains small then the data will be statistically significant and extremely important. The danger is that the number of those opting out could become quite substantial. I hope and pray that that does not happen. In our vote tonight, we will at least be showing those who are concerned that we believe that there should be a statutory underpinning. I beg to move.

About this proceeding contribution

Reference

753 cc1530-6 

Session

2013-14

Chamber / Committee

House of Lords chamber
Back to top