RDS YH Interview
Christopher McDermott (MBChB FRCP PhD)
Professor of Translational Neurology
Faculty of Medicine, Dentistry and Health University of Sheffield
Honorary Consultant Neurologist
Department of Neuroscience Sheffield Institute for Translational Neuroscience
“RDS have helped me collaborate and develop my programme of research in Sheffield. When I or my team go to RDS we get a very supportive and favourable response. They support the overall development of our research programmes and collaborations as well as guiding individual researchers. I encourage researchers working with me to go early to RDS with their ideas before they start down the wrong track.”
Since 2006 Professor McDermott has led a substantial programme of research focusing on delivering supportive and symptomatic care for patients living with motor neuron disorders (MND) and studying the mechanisms of neurodegeneration in order to develop treatments for patients with MND and hereditary spastic paraplegia. He set up the Sheffield MND Research Advisory Group (RAG) and is Academic Director of the Trust as well as the Chair of the National MND clinical studies group. His research funders include the National Institute for Health Research (NIHR), MND Association UK and the Medical Research Council (MRC).
He cites RDS YH has having played a key role in kickstarting his research career ten years ago and continuing to provide him and his team with high quality expert advice and practical support on all aspects of the research process including:
- research design and methodological approaches
- links to research collaborators
- public involvement
- innovative ways of disseminating research findings to patients.
“My contact with RDS Y&H goes back quite a way – not long after I was appointed a Senior Lecturer back in 2006. One of the first research grants I applied for was to NIHR’s Research for Patient Benefit (RfPB) Programme on non-invasive ventilation (NIV). I had a sense that firstly whilst we knew it was an intervention that prolongs life I had concerns that there are some people with MND who just do not get on with it. Secondly, towards the end of peoples’ lives, they were using it in a different way than how we initially start them off and I was worried that it was impacting on their end-of-life process and perhaps at that phase of illness, NIV was a problem – it might be a barrier to communication with their relatives, for example or be causing all sorts of other issues. I had these questions about NIV that I wanted to research so I went to RDS and we discussed how to approach this.
Back then there were two major things that the RDS taught me then which I knew nothing about:
- the concept of including qualitative research in the design; and
- what we should be doing about public involvement
The RDS worked with me to translate the vague hypothesis I had into a mixed methods grant application mainly using qualitative methodology. They helped me identify co-applicants as I didn’t have team members who could do qualitative research and gave me a steer on what I needed to do to meaningfully engage with PPI.
The grant was successful. It launched my research programme and things have built on from that first grant. Now I’ve quite a lot of experience of qualitative research and use qualitative/ mixed methodologies in so much of what we do.”
RDS advice on research – research methods
“I didn’t know that it was qualitative research I needed to include to answer the question. I was going to do a more quantitative process where we would just follow people up, get them to fill in questionnaires and ask about outcome measures – an approach which really would not have been correct. It was RDS who said – well have you thought of a qualitative approach? And no I hadn’t. The RfPB application was put forward as a mixed methods study but really the quantitative work didn’t contribute much because the numbers were small. It was the qualitative stuff that helped answer the questions. Now a lot of our research includes mixed methods.”
RDS advice – Public involvement
“Influenced by my contact with RDS I set up a Sheffield Motor Neuron Disorders Research Advisory Group (SMND RAG) based on the principles of INVOLVE. Rather than seeing it as an ad hoc thing where people go scrabbling around for PPI as a tick box exercise we set up a panel in 2007 which at the time was quite advanced in doing this. The panel started with about 15 members – patients, carers, past carers – and is still thriving 10 years on. We encourage all our researchers to go to the panel with their research ideas and to get ideas from the panel – it’s a two way thing.
It’s fair to say that we initially set up SMND RAG as a result of suddenly becoming aware of PPI and how important it was. I suppose if we’re honest, to begin with it was important in filling in that box on the application form and being able to write about it. That’s what drove us initially because we had to and then we thought actually it was the right way of doing it and then the whole ethos of the department doing clinical facing research changed.
We have what I call a ‘tax’ – anyone who submits a clinically facing research grant into a funding body that will allow us to do it, puts in a sum of around £2,000 as a flat fee to cover SMND RAG overheads. This is in addition to any involvement the group is going to have in specific projects so that the group can continue to function even if there isn’t much grant capture. We want it to be there all the time and it needs to have some running costs that aren’t just about paying people who are project specific. That was our idea back then and it all stems from our initial meetings with RDS.”
RDS advice – dissemination of findings to MND patients and carers
“The RfPB study on non-invasive ventilation (NIV) was a very successful project and at the end of the project it was RDS that put me in touch with a video/ media company who have expertise in ‘user dissemination’. Rather than just publishing the research findings in journals that no one ever reads – and patients certainly never see – we wanted to disseminate the research working with MND patients to do it. Again it was RDS that gave us the contacts with how we might do that.
It’s worked very well. We took the research findings of the RfPB study on NIV to SMND RAG to explain the research findings. Working with video designers the SMND group were asked to integrate the key messages of the research with their life story for other patients. At the end of the day their work was sense checked from a clinical point of view and also sent to MND Association to check over it so it got their approval. The video resource ‘my NIV’ is not only for patients but also for non-expert health care professionals – GPs or non-specialist physiotherapists – who may not see many MND patients.
We recently repeated the process reporting research findings on gastrostomies called ‘my Tube’. This video aims to support people thinking of getting a feeding tube fitted and people who would like advice about using one. It’s even better than the NIV one!”
“RDS helped and directed me to the right research methodologies and public involvement needed to answer the questions I had, put me in touch with other researchers and with patients that I could collaborate with to carry out the research and disseminate the findings.”
RDS research advice – on-going support, capacity development
“I am the Academic Director for Neuroscience in the Trust and we have various research themes within neuroscience some well established and others which we are trying to encourage – neurosurgery for instance – we have some new neuro-muscular consultants starting out. I encourage them all to go to RDS really early on before they waste too much time thinking about what methodologies they’re going to use. My own case is a good example. I didn’t know much about qualitative research 10 years ago and I wouldn’t have thought of the way they suggested to address the problem. So I encourage others to go to RDS with their hypotheses and seek advice and direction about what they’re trying to do long before they think they might put in a grant application and also to get advice on which grant to go for.
Often there could be several visits to the RDS before a grant application is considered ready to submit. Particularly for people going to RDS who are new to research thinking about which is the appropriate way to answer this question – or sometimes people aren’t sure what the research question is. We have a neurosurgeon who is very new to research. He’s getting a lot of support from the RDS and he’s beginning to develop and gather a collaborative group involving people from across the country because he’s being advised correctly about what an application to NIHR would need. He’s working with experienced co-applicants and getting good advice in trials design.
I also chair the NIHR MND Clinical Studies Group (as part of DENDRON) which has monthly teleconferences and an annual meeting. In 2016 as part of the portfolio generation of research ideas the group took the newly published NICE MND guidelines and spent the day scoping out research priorities and potential sources of funding. We successfully set ourselves the task to come up with two sketched out research proposals for grant applications by the end of the day. The RDS YH facilitated the day which was excellent.”
“RDS – they are involved in everything really!”