NHS: Association of Medical Research Charities Report

Earl of Selborne Excerpts

Thursday 27th June 2013 Grand Committee

[The Earl of Selborne]

My Lords, I start by congratulating the noble Lord, Lord Turnberg, on giving us the opportunity to discuss this most important report. I pay tribute in his absence to my noble friend Lord Willis, who is chair of the AMRC. As everyone does, I strongly endorse the case made so powerfully by the report to ensure that every patient has the opportunity to take part in research. However, my plea today is really about ensuring the realisation of the potential of the vast amount of data held by the National Health Service.

The scope of the National Health Service’s database is one of its greatest assets. The potential of these huge datasets, which could be drawn on for research, is much greater than the present rate of exploitation. That is not to say that there is not some excellent work being done. I draw attention to the press report which came out when the survey was published, as referred to by the noble Lord, Lord Turnberg. Professor Peter Weissberg, medical director of the British Heart Foundation, stated that:

“It’s vital we create a system where researchers have better access to patient data so we can use it to help find new life-saving treatments for heart patients”.

After “heart-patients”, read “and every other patient”. We should take great lessons from the example of 10 years ago, when the Medical Research Council and the Wellcome Trust established the UK Biobank to support the investigation of risk factors for the major diseases of middle and old age. The recruitment of more than half a million men and women aged between 40 and 69 was successfully achieved, with a great deal of support from the public, and their health has been monitored long-term. When the House of Lords Science and Technology Select Committee published its report on genomic medicine four years ago, it quoted the evidence of the Wellcome Trust Sanger Institute:

“The UK Biobank initiative has set a gold standard for ethical principles and guidelines concerning the large population studies”.

In other words, there was recognition that there was a need to protect patient privacy and to reassure the public that their concerns about the data being abused or misused were being adequately and most properly addressed. The procedures for ensuring the protection of personal privacy were considered exemplary. Yet Professor Collins of the UK Biobank told the Select Committee that if he were able to make one recommendation, it would be to remove the bureaucratic obstacles to using health records to improve the health of people in the United Kingdom. The report came out just after the Information Commissioner at the time, Richard Thomas, and Sir Mark Walport, now the Government’s Chief Scientific Adviser, had conducted a data-sharing review in 2008. This review concluded that,

“the complexity of the law, amplified by a plethora of guidance, leaves those who may wish to share data in a fog of confusion”.

What has changed over the last four years? First and foremost, the technology has changed. The ability to collect, store, share and integrate ever greater volumes of data has advanced exponentially. However, our ability to unlock more of the vast database that is available from the National Health Service has not matched these advances in technology. We are still not using these data to their full potential, to ensure that research findings are transferred to clinical and therapeutic use. The huge datasets that could, with public support, be drawn from the National Health Service and which could underpin new and exciting opportunities for the diagnosis and treatment of disease are still waiting for full exploitation.

The biobank has been an outstanding example of what can be achieved. When the public are effectively engaged, there is overwhelming support for their own data to be used to support the public good. It is therefore essential to reassure the public that their data will be handled safely. This requires effective systems and good communication among practitioners, researchers and patients—and, indeed, among all healthcare professionals. The UK Biobank has shown that this can be done.