Research gets a look in at the Health Bill committee

Posted on February 14, 2011 by

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The committee scrutinising the Health and Social care bill took evidence last Thursday from Cancer Research UK and they got on to some of the issues the Bill poses for health research and opportunities in the NHS for patients to get involved in research.

Background

The Commons public bill committee is in the process of scrutinising the health and social care bill clause by clause. More background on how this works here. This includes calling in witnesses to give oral evidence.

What was discussed on 10 February?

You can read the transcript of the session here.

The interesting researchy bit is at question 292, where Owen Smith turns to Sarah Woolnough, Head of Policy at Cancer Research UK. Annwen Jones, Chief Excutive of Target Ovarian Cancer comes in at the end.

This questioning begins to explore the big question of where research fits in the new health system; particularly who has a duty to promote it.

Cancer Research UK call for the new NHS commissioning board – who will lead decision-making over what services should be commissioned across the NHS, although GP consortia will do most of the actual commissioning – to include a “research champion” who can make sure research gets a look in, especially in times where money is tight and research can seem expensive.

Recent research conducted by AMRC and UKCRC focused on the use of patient data for research found that GPs generally have low interest in research; regarding involvement as difficult and too time consuming alongside other pressures which suggests it will be particularly important to support them to recognise its value, especially with their enhanced commissioning role. (UK Clinical Research Collaboration Board Sub-Group on Public Awareness Board Sub-Group on Public Awareness, Attitudes and awareness amongst general practitioners (GPs) and patients about the use of patient data in research, August 2010)

Sarah echoes something that was mentioned in the NHS White paper back in July, that “patients treated in research environments tend to do better” and also points out the UK is currently a world leader in research.

Also covered in this discussion is the Academy of Medical Sciences recently published recommendations on how we can improve the regulation and governance of health research in the UK (see my summary of what this says here). Sarah mentions delays caused to getting research trials off the ground, a recent Cancer Research UK analysis actually found that after their funding for a study had been agreed, it takes an average of 621 days to recruit the first patient. We are waiting at the moment to hear how the government plans to act on the Academy’s recommendations to improve this.

Q292 Owen Smith: Sarah, research and development has been one of the focuses of Government policy recently. They have tried to get the NHS to concentrate on research and, hitherto, PCTs have held the funding budgets. What will happen to that research and who will pay for it? If it is GP consortia that will henceforth be involved with that, will they have either the requisite expertise or the interest to engage in R and D?

SarahWoolnough: The Bill does not make clear what will happen. It is really the excess treatment costs that PCTs currently cover for clinical research. What we have said is that this urgently needs to be resolved. It could be GP consortia or it could be a proportion of budget taken from the NHS commissioning board that would cover excess treatment costs. What we absolutely want to happen is for research to continue to be championed in the NHS. Although the commissioning board has aduty with regard to research, we would like a research champion to be on the commissioning board.We would like a research champion—or somebody with a duty to promote research—to be on or involved with every GP consortium to ensure that we get the kind of support for research in the NHS that we think we need. The context is that patients treated in research active environments tend to do better. Cancer has been a real success story. Nearly one in six cancer patients are involved in a clinical trial. We are world leaders, so we have to ensure thatwe maintain momentum and continue to progress.

One other critical point relates to where we are not very good.We are not very good at getting trials off the ground quickly, smoothly and efficiently. The Academy of Medical Sciences recently published a report with some recommendations that have been broadly welcomedby the community. We would like them to be taken forward in parallel with the Bill. The most important matter is trying to solve the problem of NHS trusts duplicating because they are all having to approve trial protocols. That is ridiculous and delays trials totally unnecessarily and in a lengthy way. We want the Bill to take account of that and be an opportunity to get this right.

Q293 Owen Smith: So to bring it alive, the risk is that a patient will turn up at a GP’s surgery with a cancer and the GP may not have—as would happen undercurrent circumstances—sufficient insight into where the clinical trials that might be of relevance are going on.They also might not understand how to navigate the patient to those trials.

Sarah Woolnough: Then, it is a couple of different issues. One critical issue is that we know patients want to be told about research opportunities and want to beinvolved in research if they can be. We would like to make sure that patients have every opportunity to do so. Often that will be through primary care or early after a diagnosis. They want to be told about research opportunities. That is one side of it. The other side is making sure that, as we go through this big organisational change, we do not lose sight of the importance of research. We know that PCTs sometimes disagree with trusts about paying the excess treatment costs and I suppose that our concern would be that, in a time of financial constraint, research might not be at the top of a GP consortium’s list as something to support. However,it has been critical in driving improved cancer outcomes,which is why we have highlighted it in our evidence.

Annwen Jones: I endorse everything that Sarah has just said. This is such an incredibly exciting time in cancer research, and we are seeing so many new approaches, particularly in targeted therapies. In ovarian cancer, we have not had any new treatments in more than 20 years. That is shocking, and it is one of the reasons why we have had such poor survival rates, with late diagnosis, of course, being the main reason. We would like some clarity on how we can protect the clinical trial process and how that will work. We strongly support the need for better information, but we would like to know how the funding for those clinical trials will work in the new environment, and where the decisions will be made.

What next

The Committee will continue to take evidence and discuss the bill until the end of March.  It is possible to submit evidence to the committee right up until this point – see here.

The Government is likely to respond to the Academy of Medical Sciences report A new pathway for the regulation and governance of health research soon.

Posted in: Policy