Care Bill [HL]

Earl of Erroll Excerpts

Wednesday 7th May 2014 Lords Chamber

[Baroness Brinton]

I agree with the last comments of the noble Lords, Lord Lester and Lord Ribeiro. One of the problems that your Lordships’ House has faced with this is the issue of data used for research versus data used for commercial purposes. That becomes a very grey area when some commercial firms are doing pure research. It may be worth your Lordships’ House remembering that even commercial research, whether it is carried out by research departments or within universities and other research bodies, is bound by the strongest ethical codes in which we should all have trust and assurance because they are respected around the world. I would be grateful if the Minister could confirm again—I know he has already done so—that commercial data will not be released so that, for example, an insurance company could raise premiums for a particular group of patients. That is the fear that the public have, rather than the issue of using research data, for which we already have many structures and for which the Health Research Authority is properly the correct authority to make sure that the codes are followed absolutely. There is a difficulty in that pseudonymised and anonymised data can sometimes be undone, but that issue already exists in other research areas and there are plenty of mechanisms to hold researchers to account should they use any of that information themselves. I support the point of the noble Lord, Lord Lester, that we should be content with the Government and that if we start to overprescribe, we will end up unravelling some of the complex but effective arrangements that already exist in the research world.

Secondly and very briefly, I have previously raised with the Minister one very specific point on this issue, and I have asked him this question in writing in advance. Has there been any progress on the timetable for inclusion of primary care musculoskeletal data into the care.data programme? I understand that it was an unintentional omission earlier in the process but, given the number of people in this country suffering from musculoskeletal problems, it would be quite extraordinary if they were not included at an early stage.

[The Earl of Erroll (CB)]

My Lords, I would just like to say a few words about this because I am very involved in the whole world of IT, personal data and identification and the issues around examining the data. One of the things that has become apparent to me is that if care.data is to be effective, public trust must be maintained in it—that is the core problem. It needs to be there so that we can do epidemiological studies, and to do those some information will have to be in the database—such as postcodes, so that you can look for clusters and so on—which will potentially allow people to be identified. Once you compare it and link it across to other databases, if you are looking for someone who is of a certain age, a certain health profile and in a certain area down to 100 yards, it is fairly easy to start working out who they are by cross-linking. However, it may be important to take that risk from time to time, as long as it is done properly. What we do not want if this is to work is for people to feel a need to opt out. You cannot do epidemiological studies if half the population decide they are going to opt out. It is essential that the public trust the database, trust that they will be protected as far as possible and trust that the information will not be misused against them. That is the core to getting this whole thing to work, and if you fail on that you have had it.

The noble Lord, Lord Lester, made a very good point about the human rights stuff being in there and that we have the Data Protection Act and all these things. The Minister also mentioned the Data Protection Act. However, there are some challenges with this. One of them is how you bring a case under the Human Rights Act when a department or the health service is acting incorrectly. It is quite tricky; it does not happen overnight and you would be lucky to stop it. There are wonderful protections in the Data Protection Act but there is a certain amount of vagueness about exactly where the limits are and, worse still, it will all be changed this autumn or winter when the new European Parliament assembles. The proposals nearly got through before the coming elections. Under the digital single market agenda, a new Data Protection Act regulation will almost certainly come out of Europe somewhere towards the end of the year. That will have direct action in this country. We have no control over it as it is a European law that is directly effective in this country, and the Information Commissioner over here will be the person who will enforce it. We will have no say in whether it relaxes things too far or becomes too prescriptive in what it does. We cannot rely on it for certainty in the future

[Lord Lester of Herne Hill]

The noble Earl may not be aware that nothing that comes from Brussels will be able to offend the European Convention on Human Rights or the charter of rights with regard to EU action.

[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.