Queen’s Speech

Lord Sharkey Excerpts

Wednesday 3rd June 2015 Lords Chamber

[Lord Sharkey (LD)]

My Lords, I declare an interest as chair of the Association of Medical Research Charities and I will speak about medical research and the NHS.

The United Kingdom is a world leader in medical research. More than 75% of clinical research in the United Kingdom is rated as world-leading and internationally excellent. Every morning on my way here, I drive past the magnificent new Crick Institute, which is a tribute to our commitment to leading the field in biosciences, a tribute to the Government’s support and, of course, a tribute to the drive and vision of Sir Paul Nurse.

The Crick Institute is a reminder of what we have achieved in medical research and a token of what we hope and intend to achieve in the future. But all this requires funding and that raises some questions. The ring-fencing of the science budget by the previous Government certainly provided welcome stability and certainty for planning purposes, but it did not allow for inflation, resulting in an erosion in real terms of more than £1 billion during the past five years. Given the leveraged investment that the science budget brings, do the Government have plans to increase and to ring-fence the science budget for this Parliament?

As the Minister will know, a vital part of our spending on medical research comes from charitable donations. Last year, the members of the Association of Medical Research Charities invested £1.3 billion in research in the United Kingdom, which is more than was invested by either the Medical Research Council or the National Institute for Health Research. Ninety per cent of this £1.3 billion research funding is spent in our universities.

The Government help significantly with this via the Charity Research Support Fund. This fund was introduced in 2005 to cover the universities’ broader infrastructure and general operating costs associated with charity-funded research. That means that the Charity Research Support Fund ensures that the money so very generously donated for research is spent directly on research. Unfortunately, the fund has failed to keep pace with the very welcome increase in charity spend. The fund was frozen in 2010 at £198 million. Since then, eligible charity funding has grown by 17%. So my second question for the Minister is: are the Government planning to increase the Charity Research Support Fund so that it keeps pace with charity spend?

There is also a question about funding for the National Institute for Health Research. It is generally recognised that research in the NHS has undergone a renaissance since the establishment of the NIHR, but its budget is less than 1% of the overall NHS budget. Most knowledge-based organisations spend between 5% and 30% of turnover on R&D. There is also a clear business case for increasing research spending via the NIHR. Every £1 of government and charity investment in health research returns between 37p and 40p through health and economic benefits every year in perpetuity. The Government have committed an additional £8 billion of funding for the NHS. Will this result in an increase in the budget for the National Institute for Health Research?

I turn now, in a little more detail, to the NHS itself. The report entitled Every Patient a Research Patient?, commissioned by Cancer Research UK and published two weeks ago, paints rather a mixed picture of the research landscape within the NHS. Professor Dame Sally Davies said in response to the report that,

“there is considerably more to do to improve the commitment, culture, capacity and capability of the NHS to promote, support and conduct research”.

However, I regret to say that evidence seems to suggest that support for research from NHS England remains lukewarm at best. In fact, apart from reference to the 100,000 Genomes Project, research is barely mentioned in its business plan for 2015-16.

The Prime Minister’s own aspiration, espoused at the launch of the strategy for UK life sciences, was that every patient would be a research patient. Could the Minister say how the Government plan to achieve this? How will they deliver on the NHS constitution’s pledge that service users will be informed about research studies in which they may be eligible to participate? The door is open here, surely. We have clear evidence of wide public support.

Finally, there is the question of patient data. The UK has a proud and pioneering record of using epidemiological data to support public health. Successive Governments have outlined ambitious plans to realise the enormous potential in patients’ data. But the current situation is far from satisfactory. Failure to record, link and share data for care and for research has damaging consequences. This failure compromises the safety of patients, reduces opportunities for efficiency gains in the NHS and reduces opportunities for the research which could transform our ability to predict, diagnose and treat disease. Furthermore, the confusion and uncertainty following the care.data debacle have resulted in a significant deterioration of the environment for health records-based research. This is not a satisfactory situation, as I am sure the Government are only too well aware.

There are things that we need to do urgently. We obviously need a simple way to enable patients to opt out of sharing their personal records, if that is what they want, without impacting on their care. We need clarity on which organisations will have access to data and for what purposes. We need clarity on secure storage and on the handling and dissemination of patient data, and we need sanctions—real sanctions, with teeth—for those who mishandle or misuse patient data. And we need, most of all, to get on with all this. I very much hope that the Government feel the same way. I look forward to discussing all these issues in the near future with the noble Lord, Lord Prior, whom I am very glad to welcome to the Front Bench.