http://www.theyworkforyou.com/debates/? ... o2id#g31.3Life Sciences
Oral Answers to Questions — Communities and Local Government
3:32 pm
5 Dec 2011
Andrew Lansley (Secretary of State, Health; South Cambridgeshire, Conservative)
With permission, Mr Speaker, I would like to make a statement about the strategy for UK life sciences that the Prime Minister is launching this afternoon at a leading life sciences conference.
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We must also ensure that we make better use of our unique NHS data capability. It is often said that the NHS is data-rich but information-poor. As a national health service, it contains more data about health than any other comparable health system in the world, but neither the NHS nor scientists developing new drugs and treatments have always been able consistently to make good use of the data or to use them to drive further scientific breakthroughs.
We have seen how powerful the release of data can be. For example, South London and Maudsley NHS Trust and the Institute of Psychiatry now have access to a database covering 250,000 patients. It includes their brain scans, medical records and notes—a wealth of information, all consented to and all anonymised, that is helping them find new answers in the fight against dementia.
We need powerful data-handling capacity and the skills to write the software to mine them. That is why we are investing in e-infrastructure, which will provide secure data services to researchers. The clinical practice research datalink is being introduced by the MHRA in partnership with the NIHR and will provide a specialised service to the research and life sciences communities. Let me reassure the House that we will take all necessary steps to ensure safeguards for patient confidentiality.
We will also make sure that more UK patients get the opportunity to take part in national and international clinical trials and play a much greater role in the development of cutting-edge treatments. We believe that patients should have the right to access new treatments and be involved in research to develop new medicines.
We have responded to calls from research charities and clinicians for Government to get patients more involved in supporting research. A recent Ipsos MORI poll in June found that 97% of people believed it is important that the NHS should support research into new treatments and, in addition, 72% would like to be offered opportunities to be involved in research trials. We will therefore consult on changing the NHS constitution so that there is an assumption, with the ability to opt out, that data collected during a patient’s care by the NHS may be used for approved research.
That would make it clear that researchers and companies with new and potentially life-saving medicines could access the data of patients and could approach patients whom they feel could benefit in order to discuss their involvement in research studies. This would encourage growth in the life sciences industry as more people and more detailed data would be available for the important trials and research needed to get breakthrough treatments used more widely.
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Andrew Lansley (Secretary of State, Health; South Cambridgeshire, Conservative)
I am afraid that the last sentence was not really worth it, Mr Speaker. The right hon. Gentleman, while talking about things that were completely irrelevant to my statement, asked a number of questions. Will patients be able to opt out? Yes. It is clear that they will be able to opt out, as I have said. Are there risks relating to a small number of patients being identified? No. As he should know, and as has been done in relation to the general practice research database, where there are small populations of patients in which it might be possible to indentify individuals, or where a small number of patients have very specific sub-sets of conditions and there is a risk of identification, it is perfectly possible to ensure that that information cannot be accessed through the database. We have made it clear that data would be not only anonymised—in fact, it would be double anonymised—in order to ensure that it cannot be recreated, but viewed in such a way that will make it impossible to identify from the circumstances of the data where the patient comes from.
The right hon. Gentleman asked whether the database must be used for approved research or could be used for other purposes. It must be used for approved research and cannot be used for other purposes. It is not a database that people, whoever they may be, whether from universities or pharmaceutical research companies, can simply access in order to go mining for information; they must do so only through the MHRA and for approved research purposes.
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Andrew Miller (Ellesmere Port and Neston, Labour)
It is good to see that the Secretary of State is now on the same side of the debate as me regarding NO2ID and similar issues. Nevertheless, there is an important issue about ensuring the greatest public buy-in to the issue of data sharing, and careful work is needed on that. May I specifically ask him about the catalyst fund? To what extent is this new money? Can he assure the House that money from patient care is not being transferred into the catalyst fund? Will the Technology Strategy Board be able to control its use, or will it be directed by Government?
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