Like other noble Lords, I welcome the noble Lord, Lord Stevens of Birmingham, and congratulate him on his frank and witty maiden speech. I declare an interest as chair of both the Association of Medical Research Charities and the Specialised Healthcare Alliance.
Last year, members of the Association of Medical Research Charities contributed £1.7 billion to medical research in the United Kingdom—more than either the NIHR or the MRC. The Specialised Healthcare Alliance’s 120-plus members campaign for those with less common and rare diseases, which affect some 3.5 million people in the United Kingdom. Both organisations bring the patient’s voice and interests to medical research in the UK. I will focus my remarks on medical research and rare diseases.
The Bill before us does not offer any significant differences in these areas from its predecessor, the 2012 Act. In Clause 20 on page 17, the Bill sets out a duty in respect of research for each ICB. As the noble Baroness, Lady Blackwood, explained, it says only that ICBs will have a duty to “promote” research. This is equivalent to the duties already existing in the 2012 Act. In the Commons, there were significant attempts to strengthen this and upgrade the duty to promote to a duty to conduct. We believe that the amendments proposed to achieve this—notably from Chris Skidmore, a former research and innovation Minister, and my colleague, Wera Hobhouse—had real merit. We will want to return to them in Committee.
We will also want to make sure that, to make a duty to conduct research effective, this duty will also extend to eligible organisations for which ICBs are responsible. The benefits of making it a duty to conduct, rather
than just promote, research are well evidenced and wide-ranging. They include improved patient outcomes, improved job satisfaction among health workers and significant gross value added being generated. It is well evidenced that patients treated in research-active settings have lower mortality rates and increased confidence in the care they receive. There is an equally strong body of evidence that shows that engaging in research improves job satisfaction, boosts staff morale and can reduce burn-out. Research also presents the ideal opportunity for patient involvement.
I now turn to rare diseases and patients with complex conditions. The proposed structural changes in dealing with these areas would benefit from some additional safeguards and reassurances. The plan to delegate or transfer the commissioning of certain specialised services from NHS England to ICBs makes it vital that minimum national standards are strictly observed. I know from conversations with NHS England that that is its clear intention. However, we need more detail on how this is to be done, how it is to be monitored and how any corrective actions may take place. Also, what mechanisms will be in place to take advantage of learnings across ICBs and generate continuous improvement? It is especially important that we know what measures will be in place to prevent the fragmentation of the care for people with complex comorbidities. We shall want to ask how the interests of this group can be embedded in the ICB decision-making process.
Finally, I turn to the question of approvals. We want to see provision made in this Bill for establishing a new assessment route for medicines for people with rare and less common conditions, with better engagement with these patients and faster timescales—perhaps something analogous to the approach taken to the creation of the highly specialised technologies appraisal programme of 2012. We will want to discuss this issue in Committee.
The UK is already a medical research superpower, as recent events have demonstrated. If we are to maintain and profit from that position, as the Government wish, investment in research is absolutely critical. That investment does not only require proper funding; it requires collaboration between funders, especially between medical research charities, the NHS, our research universities and industry. It also requires recognition of the importance of listening to patients and patient groups and involving them in every step. I look forward to raising all these matters, as well as the Government’s bizarre and overenthusiastic use of delegated powers, in more detail as the Bill makes progress.
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