My Lords, I am grateful to the Minister for that full and helpful description of the background to this whole area of the use of confidential information. There is little doubt that public confidence in the uses to which their confidential information may be put has been badly shaken. For example, a number of recent revelations that access has been gained by one means or another by commercial organisations, insurance companies and so on has made the public—and many general practitioners—very wary and anxious.
That is why I want to put my own amendment, Amendment 45C, into the context of Amendment 45F, proposed by the noble Lord, Lord Owen, which emphasises a much stronger oversight by a statutory body: similar to, but stronger than, the Confidentiality Advisory Group chaired by Dame Fiona Caldicott, who commands such public respect and confidence. That is why I intend to support it if he moves it.
It is only against that background—of strong oversight and carefully controlled and limited access to such sensitive data—that we can even consider the very specific circumstances under which we can allow their use: not only legitimate use, but those uses which are vital for the benefit of the public and their health.
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This brings me to my Amendment 45C, where we come to the exceptions under which access to such data will be allowed. Here the current wording of the Commons Amendment, although well meant—we are pleased to have it—leaves open too many questions for interpretation. Their amendment suggests that use of patients’ data may be allowed for “the promotion of health”. This leaves us open to two types of possible interpretation that may be undesirable. For example, “promotion” could be taken to mean that food manufacturers could use data in their marketing campaigns for so-called healthy foods. That may or may not be desirable but it would put many off if it appeared that their data were being used for commercial gain in a competitive market.
On the other hand, the phrase “promotion of health” may be too restrictive and place limits on the types of research that may be carried out using patients’ data. I do not want today to rehearse the enormous value to
patients and the public of research based on their data. No one doubts that anywhere; we have had many opportunities in this House to confirm that view from all sides. However, the research community out there, from the Academy of Medical Sciences, the Medical Research Council and the Association of Medical Research Charities—here I must express my interest as scientific adviser to the AMRC—to the Wellcome Trust, Cancer Research UK and so on, have all expressed concerns about the ways in which “promotion of health” may be interpreted and may limit some types of research. For that reason, I have suggested an amendment so that the words “biomedical and health research” are placed in the Bill so that we are absolutely clear what it is that we are aiming for.
The problem this is trying to avoid is the fact that it may not be apparent that much basic biomedical research may well not be immediately promoting of health. The implication of that research may also not be felt for some years. Then there is the issue that some population-based research—epidemiological research—may not appear to be promoting health. For example, there is much research carried out by perinatal epidemiologists who use data from GP and hospital records to examine the interaction between social factors and access to maternity services. There, we are in the realms of trying to interpret what “promotion” means in this and similar circumstances. It is there that we need absolute clarity. I believe we can achieve that with my Amendment 45C which, coupled with stronger oversight of who will have access and for what purpose, should provide the essential reassurance about the safety of data while ensuring that vital research can be carried out.
I know that my noble friend Lord Hunt has tried in his Amendment 45D to reach the same end result by suggesting that the interpretation of the phrase “promotion of health” should be placed in regulations but I much prefer primary legislation to secondary legislation for such an important topic.
I make just one further point, which concerns the impact of what we are trying to do in this legislation on the data regulations being considered in the EU at the moment. There are undoubted threats coming from the EU that would make the use of patient data so limited that much of our current research—cancer registries, bio-banks and so on—would be completely blocked. It is vital that we get our legislation right if we are not to add fuel for those who are promoting such restrictive regulation. I look forward to the Minister’s response and I beg to move.