Peers call for commitments to research

Posted on January 25, 2012 by

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Three cross-party peers have written to Earl Howe to outline the key actions which they believe are needed from government to embed research throughout the NHS and public health system.

Representing the Coalition, Labour and the Crossbenches, Lord Willis, Lord Turnberg and Baroness Morgan are writing on behalf of all those peers who have been focusing on the impact the changes planned in the health & social care bill will have on research.  They lay out the concerns that are shared by those funding and supporting health research in the UK – the concerns raised in this letter are  shared by the association of medical research charities’ members including Breast Cancer Campaign, Cancer Research UK, and the Wellcome Trust and the Academy of Medical Sciences – and spell out the actions they would like the government to commit to.

They have asked for a response ahead of the next debate of the bill, which will be the beginning of report stage on Wednesday 8 February. The government’s response and any commitments they make in the light of these concerns,  will help the peers decide whether they need to pursue any of these issues further during the report stage debates, or whether they are now happy with the progress that has been made to embed research throughout the health system.

Background

The Health & Social Care Bill was introduced to the Commons. It then moved to the Lords and is in the process of being debated. Committee stage finished just before Christmas and the bill is due to be debated again on Wednesday 8 February. This will be the beginning of report stage which is another opportunity to raise ongoing issues and push for government commitments.

You can see the full timeline with links to all the debate here.

Once report stage and third reading are complete, the bill will head back to the Commons for MPs to discuss any changes the peers have made before deciding whether to allow the bill to pass into law.

The NHS supports and conducts health research – in fact it offers a world-class research environment –  so the changes planned in the bill will have a big impact on research in the UK.  In response to calls from the medical research community, considerable changes have been made to the proposals in the bill aimed at building research into the system. Peers have been continuing to probe and push further steps which could be taken to better embed research throughout the system – more detail about the key areas they have been pursuing here.

What are they calling for?

The letter lists six areas of ongoing concern, indicating government actions that could address these.

Ensuring the independence of the Health Research Authority (HRA). The Authority is now up and running as a special health authority and is getting to work. This is welcomed by the whole health research community, but it is really important that we can all have confidence in the authority to do a good, thorough independent job. It is going to be in charge of regulating research which has a huge impact on patients, and may in the future take on a role regulating the use of human embryos in research (depending on what the soon to be launched consultations on the Human Tissue Authority and Human Fertilisation and Embryology Authority conclude) so it is really important that patients and public can trust it. To ensure this, the peers are calling for the Chair and at least two of the board members to be independent.

Clarifying the extent of the duties towards research and the use of evidence. The bill introduces a duty on the secretary of state, the NHS commissioning Board and Clinical Commissioning Groups to promote research and innovation and the use of research evidence. This is brilliant – making sure all the people and bodies across the NHS must get involved with research is the best way to embed it throughout the system and get everybody doing it. But we’re not sure how powerful these duties actually are – will they require the Secretary of State, the board and the CCGs to do anything to fulfil them, do they give them the power to act to make sure research is promoted. So the peers are calling for a bit more detail on what these duties actually mean in practice.

Ensuring the necessary accountability and reporting structures are in place to embed and monitor research throughout the health system. If we want all the bodies in the health system to conduct and support research, we need to make sure they both plan for it when they are deciding how they are going to spend their money, and report on how well they’ve done it – so that research doesn’t slip unnoticed through the gaps. With this in mind, peers have tabled amendments during committee stage suggesting that research and innovation be singled out for a specific mention in the planning and reporting requirements on the NHS Commissioning Board and CCGs. The government are not convinced this is necessary. But, many of the newly established CCGs are publishing their plans at their moment and there is scant reference to research in them so the peers are asking the government to reconsider. They are suggesting that now is the time to build planning for research & innovation into the authorisation process that CCGs go through before they are properly established, to make sure it is built into the NHS structures from the very beginning.

This may also help tackle ongoing problems like the payment of treatment costs for patients involved in charity-funded research projects. The government is committed to covering these costs through normal arrangements for commissioning patient care (a commitment made in their response to the NHS Future Forum back in June), but currently responsibility for the costs is not always clear in practice and clarifying which body should pay them can delay research projects getting off the ground.

Reviewing the policy on attribution of costs associated with charity funded research. Charities pay the direct research costs of studies but do not generally pay for the costs of hosting and supporting research (things like the upkeep of the buildings it is conducted in etc) because this falls outside their charitable objectives. The means that when they fund research in the NHS, the costs that the NHS will cover and the costs that charities cover need to be clearly defined. The current policy determining who will pay which costs is being revised. However this process is taking a long time and in the meantime there is uncertainty over who pays what, which makes it difficult to get research projects off the ground. So the peers are pushing for a working group to put together a new policy as quickly as possible, to get it up and running as all the structures in the NHS are changed.

Unlocking the potential of patient data for research: ensuring a secure and proportionate framework. Patient data are a huge resource for medical research (see more info on how and why it is used here). And the government have recently launched a number of initiatives aimed at ensuring our data can be used safely and securely to do research – including a new secure Clinical Practice Research Datalink which will bring together data from GP and hospital care in once place that can then be used for research and a plan to consult the public on introducing an ‘opt out’ clause in the NHS constitution exploring whether we should move to a system where anonymous data collected during a patients care in the NHS may be routinely used for research unless the patient has asked to opt out. The new Health Research Authority is also going to take on some responsibilities in overseeing the regulation of research using patient data.

The government are also planning to publish an information strategy by April this year. This strategy will look at the management of all information by the NHS for lots of different purposes. Peers are concerned that it must include a focus on the importance of making data safely and securely available for research. And it must tackle the tricky problem of in some cases enabling identifiable information to be used in research. Sometimes researchers need access to some identifiable information, for example, to explore whether there is a correlation between children growing up near powerlines and incidences of childhood leukaemia, researchers need to know where the individuals involved in the study live. But we need to ensure that this can be done safely and securely so we can all have confidence in the system that our data won’t be abused.

Providing clarity on the proposals for education and training. It is important that the NHS has a skilled workforce, and important that they are confident to research and innovate to improve patient care. Getting education and training right is key to this.

In response to concerns, the government have published lots more detail on how they plan to manage education, including establishing a body called Health Education England to provide national oversight of a series of Local Education and Training Boards.  The peers welcome this in their letter but do stress a few steps that will be important to make sure the system works, including close links between the Local Education and Training Boards and universities.

The government are planning to introduce new amendments in this area at report stage.

What next?

The peers have requested that the government respond to the issues they have raised in this letter ahead of the next debate of the bill, report stage on Wednesday 8 February. The government’s response and any commitments they make in the light of these concerns,  will help the peers decide whether they need to pursue any of these issues further during the report stage debates, or whether they are now happy with the progress that has been made.

Posted in: Policy