We’re half way through the second reading of the health bill in the Lords – first day yesterday and the second day today, starting around 11am. The impact of the bill on research got quite a look in during the debate – I’ve picked out a few interesting mentions below
Background
Second reading is the first big debate of the bill in the Lords. With about 100 peers with their names down to speak, they’ll each have about 7 minutes to outline their thoughts about the bill, indicating the issues they may be considering exploring further and amending later.
The bill’s passage through the Lords is a great opportunity for the government to make further changes to the bill or make commitments during the debates to take things forward. We’re hoping to push them to consider some of our big concerns about the impact of the bill on research, and also explore some of the opportunities this bill presents to improve the environment for research in the NHS.
In the course of the debates, we’d like more detail on how the government will take steps to:
- Provide further detail of how the commitments to promote research and innovation will be delivered
- Develop effective mechanisms to deliver research locally
- Establish streamlined and robust regulation and governance of health research
- Integrate meaningful patient and public involvement in research
- Enable the safe and secure use of patient data for research
- Develop the health research workforce
- Support innovation in the NHS
Mentions of research yesterday
Lord Ribeiro (a former president of the Royal College of Surgeons of England) mentioned the new duty on the secretary of state towards research:
…The inclusion of research as a new duty for the Secretary of State puts an onus on him or her to promote the use of evidence obtained from research, a duty which also relates to the NHS Commissioning Board and the clinical commissioning groups. Other noble Lords will, I am sure, speak about the importance of research, but it is important that the Chief Medical Officer who, as the Chief Scientific Adviser and Director of the National Institute of Healthcare Research, must be given the independence of action to ensure that the Commissioning Board and the clinical commissioning groups take account of the evidence of research.
Lord Willis, chair of AMRC, focused on the impact of the bill for research
…this Bill is woefully weak on scientific research and the use of the NHS database. True, we now have Clause 5, which places a duty on the Secretary of State to promote research. A parallel duty to promote research is placed on the NHS Commissioning Board and the clinical commissioning groups-but this is merely window-dressing, without real substance.
and introduced his plan to pursue some of these issues, including pushing the government for more detail of their vision for the new Health Research Authority – the single regulator of health research which the government is establishing – more background here.
Setting up a health research authority as a special health authority is welcome but, apart from finding a home for the Medical Ethics Service, it answers few of the fundamental questions raised by the Academy of Medical Sciences. Equally, plans to improve the NHS R&D permissions process by making future funding conditional on NHS trusts meeting new approval timelines is very welcome, but how autonomous trusts will be persuaded to fast-track approvals is far from clear. What if the new commissioning groups say, “Research is not our priority”? How will the Secretary of State, without those powers, deal with exactly that?
..I hope that amendments will come forward to consider setting up a new authority, though I recognise that unpicking our existing governance framework in order to streamline it will require a phased approach, the transition of several functions, and therefore co-ordination between a number of bodies. It will also mean dealing with the fall-out from the Public Bodies Bill, which seems to have been forgotten, and dismantling organisations such as the Human Tissue Authority and the Human Fertilisation and Embryology Authority. However, the academy has created a clear vision so that all those involved in undertaking research are clear on the end-point we are aiming for, and what is expected of them during the transition.
Baroness Warwick echoed the importance of research -particularly the need for training tje the health workforce, doctors and nurses, to engage with research:
That brings me to another area of concern, which is research. I am pleased to follow the noble Lord, Lord Willis, in his spirited advocacy for research. It is vital-for patient care but also for the economy of the UK-that research is not overlooked as we debate this Bill. The structural changes to the NHS proposed in this Bill could, as I see it, be a threat to the UK’s important biomedical research industry. We must ensure that every healthcare provider has a duty to train the next generation of doctors and nurses. Having a research culture embedded in the NHS, from the Secretary of State to clinical commissioning groups, is vital if we are to tackle some of the health challenges we face.
Baroness Morgan of Drefelin, a crossbench peer and chief executive of Breast Cancer Campaign which funds research, focused on research as one of three key issues, touching on the need for further detail on what the new research duties on the secretary of state and commissioning groups mean, the plans for the new Health Research Authority and the need to develop a safe and secure system to allow patient data to be use in health research:
On research, we have already heard from the noble Lord, Lord Willis, that the role of medical and scientific research in the promotion of high-quality healthcare is extremely important and highly significant. I am delighted that I am not the only one who has highlighted research today. The noble Lord, Lord Darzi, also made a very important point. We should not forget that long-term improvements in treatments are largely derived from and are dependent upon medical research, which requires long-term investment. The NHS offers a unique setting in the world for research and has enormous potential to enable and support advances in research. My concern is that we are still far from maximising the potential for patient benefit.
I am pleased that the Government have responded positively to concerns about the future for research in the NHS by introducing duties to promote research, which will be placed on the Secretary of State and commissioning consortia alongside the existing duty on the Commissioning Board. The AMRC and other medical research charities, including my own, have campaigned for that. However, I will be pressing the Minister to provide further detail as to what these duties will mean in practice. As the noble Lord, Lord Willis, said earlier, we need to be very careful that these duties are not just window dressing. In particular, I want it to be clear that there should be measurable benchmarks developed as a result of these duties.
I, too, must raise the issue of the regulation and governance of medical research. The key report by the Academy of Medical Sciences on this subject has been widely welcomed and I look forward to hearing more from the Minister about a timetable for the further development of the Health Research Authority-I do not understand at all why this cannot be in this Bill. Surely there is a great opportunity here to get that right and establish the authority.
The same Academy of Medical Sciences report raised the need to simplify the use of NHS patient data. This is a really important opportunity for progress. Another example of the positive use of patient data is the million women study-a collaborative project among Cancer Research UK, the NHS and others that involves more than 1 million women aged 50 and over-which identified the cancer risks of hormone replacement therapy, which is a key issue for women in this country. Will the Minister explain what consideration he and his colleagues have given to taking action on patient data to ensure greater simplicity within the system in order to promote such vital research?
Baroness O’Neill went on to echo this concern over enabling the use of patient data for research (The EU directive governing the use of personal data across Europe is currently in the process of being revised by the European parliament):
That control of the proliferation of damaging requirements for accountability also affects medical research. For example-the noble Lord, Lord Willis of Knaresborough, and the noble Baroness, Lady Morgan of Drefelin, referred to this-current interpretations of the Data Protection Act 1998 impose an extraordinary and, in my view, unnecessary burden of complexity on clinical research in this country.
Lord Walton echoed the concerns over research, singling out the work of the NAtional Institute for Health Research (NIHR) and concern that this should be protected:
The noble Lord, Lord Willis, made an excellent speech, and so did the noble Baroness, Lady Warwick, about research. One must recognise that although there are three sentences in the Bill about the responsibility of the NHS for research, they are not enough. Today’s discovery in basic medical science brings tomorrow’s practical development in patient care. Years ago I chaired an inquiry into research in the NHS, which led to the Culyer report and led, eventually, to the establishment of the National Institute for Health Research. The Government of the day said that 1.5 per cent of the national health budget would be spent on research. It has never got up to more than 0.9 per cent, but nevertheless could the Minister confirm that the work being done by NIHR under the inspired leadership of Dr Sally Davies and others will be protected? Will it be made clear to commissioning groups and independent foundations trusts that they have a responsibility for research? I echo entirely what the noble Lord, Lord Willis, said about the crucial importance of accepting the report of the Academy of Medical Sciences, so expertly chaired by Sir Michael Rawlins, which will make the organisation of clinical trials, which have become so incredibly complex, very much easier. It is important that this be enshrined in the Bill.
Baroness Royall also signalled her support for the concerns over research:
The noble Lord, Lord Willis, made a superb speech about research and development. I very much hope that the Government will take on board absolutely everything he said as I believe it is very necessary for a modern health service.
What next?
Another day of debate today – look out for more mentions of research – and then committee stage, where the bill is scrutinised clause by clause and amendments are tabled to probe the governments intentions and suggest how the bill can be improved, will start in about two weeks.
The All Party Parliamentary Group on Medical Research are planning a briefing focused on research and the bill ahead of committee stage to give peers the opportunity to speak directly to researchers about their concerns ahead of the next debate. The coalition of organisations supporting health research are also working hard to produce more detailed briefing ahead of these debates to support peers.
AMRC blog 
Posted on October 12, 2011 by beckypurvis
0