Care Bill [HL]

Baroness O'Neill of Bengarve Excerpts

Wednesday 7th May 2014 Lords Chamber

[The Earl of Erroll]

I fully agree with the noble Lord. My challenge with it is how easy it will be to raise a human rights case if we find that the regulation does not comply with something on which we have legislated here and there is a conflict. I accept that it is theoretically possible. I would argue that maybe the way proposed by the noble Lord, Lord Owen, is another way of trying to make sure that we do not have to go to that step.

Briefly, there are some commercial issues with this. One of the changes is that the National Health Service may end up giving away data that are all good for research purposes but which would be very useful for pharmaceutical development and stuff like that. Companies will make a lot of money from information that they get from the data, but I would like to see the NHS benefit. I do not have a problem with it selling the correct data if it is properly controlled for the right research purposes. There will also be some businesses and companies that will make a business out of analysing such data and selling the analysis back to the NHS. It would be useful because the NHS does not have the time or the skill to do that work, but the NHS should benefit from the work and effectively charge for the data that it sells.

There are two reasons why I like the amendment of the noble Lord, Lord Owen. On the Minister’s interpretation of statistics, if we take the more general wording, “the promotion of health”, and it is possible for the food industry to use it to bolster some of their stuff, we have to look at some of the underlying assumptions of the statistics, which can be dangerous things. We need to see how that is done. Even if we go for the newer wording in Amendment 40C, there could be problems in this area. I do not think that anybody is capable of regulating themselves. We always have our own internal biases towards our own objectives and can be regulated only by someone who is looking at it from another point of view, from outside.

We have had the Caldicott guardians for a while. The system works as they are looking after the public interest. They give the public confidence that things are not being misused in their names. Therefore, why are we throwing away a few years of experience of something that works? It is not tampering with the wording of the Bill or playing around with a mish-mash of words; it is merely re-establishing something that already exists. It is a sensible balance. If you cannot check yourself, checks outside the organisation have to exist. Therefore, I suggest that we support the amendment.

[Baroness O’Neill of Bengarve (CB)]

My Lords, I hope that the Minister will comment on a fact mentioned by the noble Earl, Lord Erroll: namely, that on its imminent coming into force the European data protection regulation will indeed supersede our Data Protection Act, which implements the current European directive. I am sure that the debate in Brussels has been conducted with the highest aims for the protection of privacy but I also believe that it is based on considerable illusions. It aims to introduce reliance on specific and explicit consent for each and every reuse of lawfully held data. This is an illusory standard. In the commercial world it works as we can tick and click as giving consent to terms and conditions, but it does not provide an adequate model for the world of medical research. I fear that when this draft regulation comes through, which it is very likely to do, we will not have secured better standards for the protection of patient privacy in research, and nor will we have secured the future of medical research.

This seems to me to be a very poor moment at which to have to make decisions on protecting the privacy of patient data, because the ground rules are about to change. They will of course be compatible with an interpretation of the European Convention, but they will change a great deal. I declare an interest as chair of the ethics, regulation and public involvement committee of the Medical Research Council, and as chair of the Equality and Human Rights Commission.