Jonathan Miall, chief executive of Spinal Research UK, speaks to ePolitix.com ahead of its forthcoming parliamentary reception.
Could you tell us about the forthcoming Spinal Research parliamentary reception?
This is our first venture with a reception in Parliament and our first venture into Westminster with this proposition. We thought it would be a good idea to gather a few of the strategically placed people in the health area of spinal cord injury, and additionally to meet politicians to help them understand the scenario we have in this country in regard to spinal cord injury and research into spinal cord injury repair.
What we want to do is establish what we are here for, who we are as a charity, what we do, and what we are aiming to achieve over the next few years. The reception is an opportunity to set out our stall at the Palace of Westminster to MPs and peers, but also to the administration as well.
What are the main objectives of the reception?
Initially, they are to raise awareness of spinal cord injury amongst health, scientific and political communities and to raise awareness of the benefits resulting from the potential gains of research into repair. We also want to raise awareness of the research and development status in spinal cord injury and the poorly targeted research and development funding in spinal cord injury.
We, as Spinal Research, are the only funders of research in this area in the UK and that has to change, otherwise the implications for the UK are quite serious. Having said that, it's not surprising that it has been poorly targeted, as the research had not got to a point where people needed to sit up and look at it. Now it has, that is why we want to go out to the world, the public, and to Parliament to say here we are, this is the situation and this is what we have to do about it.
We want to secure support from key public figures and politicians who recognise the need and justification for long-term investment in any research strategy, but in particular this one.
We want to introduce what we term our 'translational initiative'. For the last 27-30 years we have been funding projects that have been looking at the possibilities of spinal cord injury repair. Much of that has been in the laboratory; we call that basic science. Now we have got to a point where we need to apply that to humans. We are getting very close to when we will have a trial on a human being.
To ensure that happens effectively and carries the greatest chance of success, we have to develop a strategy for pushing those trials forward. That is what we call the translational initiative; we are translating the gains in the laboratory into the clinic. We have published within our own community our translational initiative and we want to bring that to the attention of those at the reception. We want to engage the government of the day and other relevant organisations, such as the department of health, to invest in this translational initiative.
Can you tell us a little more about the translational initiative?
The translational initiative consists of three key areas:
We are establishing a specific funding stream to encourage research in the clinical setting, with clinical partners. We want to encourage academia and its partners to undertake translational projects. These projects are obviously within the strategy we are developing, and so we are now setting about raising serious money to get these moving.
Secondly, we believe that we need a centre of research excellence. Throughout the country there are individuals with specific skills in one particular area, but we do not have the coordination to bring those people together with others in another part of the country that have skills in a complementary area. We need a centre to coordinate the development of the research. It needs to be based in a centre of excellence for research and clinical work. This is something I know politicians of all persuasions are very keen to see.
Finally, something which is a crucial precursor to the success of any trials, is the establishment of a patient registry, in other words a database of patient details. This is so important because spinal cord injury is very complex, and every injury is different. If we want to undertake a clinical trial on a particular area of the spinal cord, we need to know who has an injury in that area. At the minute we do not have the details to do this. Also we need to develop a clinical trials network, involving existing spinal injury centres in the UK. We need three to five key centres that will be research centres as well as clinical centres of excellence. That is a challenge to the NHS, as well as to the researchers.
Do you feel that parliamentarians pay enough attention to the work of Spinal Research, and what more can be done to promote these specific issues alongside receptions?
The answer to the first part of the question is no, but not in a critical sense. In fairness to parliamentarians, nothing has been put in front of them yet. We have just got to the point where we have something to propose. Everyone focuses on the idea of having a breakthrough, but actually we are not in that situation. We have very small incremental developments in multiple potential therapies that lead to quarter-inch by quarter-inch developments.
We can suggest to parliamentarians that this development will slow and stop unless we have the government of the day and administration investing in the infrastructure that will support this work. This work needs to go into centres around the country for trials, and this involves an investment from a whole variety of agencies. Parliamentarians will not know about that yet; it is difficult to criticise them for not paying enough attention.
Having said that, parliamentarians have started to pay more attention recently and that is one of the reasons we are staging this reception. The all-party parliamentary group on spinal cord injury has been founded, relatively recently. It was formed 18 months to two years ago, and has met two or three times. That is a good start but research needs a lot more attention because it is very complex and expensive.
What we need to do is put in front of politicians our 20-year business plan - the upside of these plans, for partial repair of spinal cord injury, will be very large indeed. This reception is a modest starting point. What we aim to do is make a few contacts and follow up with individuals in their specific areas of work so that we can develop a network of support - then pull together a public strategy for the development of the research.
What other events or campaigns does 2010 hold for Spinal Research?
We are not currently planning anything more formal in terms of Westminster. Instead, we will develop the public affairs campaign with individuals such as ministers, research heads of the NHS, the Medical Research Council and other major agencies.
We will also engage policy-development groups such as the Clinical Research Collaboration and other interested parties including universities, spinal injury centres and key clinicians. There is a plethora of agencies and people out there with whom we need to engage. So we will be doing a lot of groundwork that will not be publicity-orientated at this stage.
This reception is a kick-start, but we will follow up with other channels in parallel. What we will try to do, that is more publicity-conscious, is develop a network of support amongst MPs. The numbers game is against us as only 50,000 people are injured with spinal cord injuries. This is bad enough, but compared with 2.3 million people suffering with cancer, it is a relatively small number. In pure political terms it's not on the radar when it needs to be, as the cost of keeping people and looking after people with spinal cord injury is crudely estimated to be the equivalent to the cost of strokes in this country.
This puts it at number-three in cost terms as a health issue. I think politicians will understand that argument, and if we can get the support of that network of MPs then I think we have a good chance of influencing the policymakers through ministers and the civil service. We will see how it is received at the reception, and that will determine how we kick-start our campaign and move off into the next phase.
To find out more about Monday's parliamentary reception, please view this Spinal Research press release.