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Case study: Tools to improve treatment for motor neurone disease

NIHR's Research for Patient Benefit funding programme supports research ideas from professionals across health and social care.

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Tools to improve treatment for motor neurone disease

Author: Dr Esther Hobson

Applying to the Research for Patient Benefit programme

I was a neurology specialty registrar at the University of Sheffield, where I’d already had NIHR funding for an academic clinical fellowship. Following that I completed an NIHR doctoral research fellowship at Sheffield Institute for Translational Neurosciences.

During my time as NIHR doctoral research fellow I worked in the motor neurone disease (MND) specialist care centre in Sheffield. MND is a terminal disease that affects the brain and nerves and causes muscle weakness that gets worse over time.

I realised that non-invasive ventilation (NIV) is a really important intervention in MND as it helps people live longer with a better quality of life. NIV uses a machine to help move air into and out of a patient’s lungs, helping them breathe when the muscles that do this are weakened by MND.

I knew NIV wasn’t always being used effectively - some patients struggle to use it for long enough periods of time to get the most benefit. Previous research funded by RfPB had highlighted some of the reasons for this through interviews with patients and carers. But we needed to bring all the research together, finding out what clinicians are actually doing on the ground and what the barriers are to effective NIV use. We then wanted to translate this into useful tools to support clinicians day-to-day. So I decided to apply for funding from the NIHR Research for Patient Benefit (RfPB) programme.

Developing the proposal

It started with a discussion with my mentor and supervisor Professor Chris McDermott, and my co-lead investigator Dr Haris Stavourlakis. I also sought advice from the NIHR Research Design Service, which led me to one of our key co-investigators Dr Sue Baxter.

Dr Baxter suggested how our idea could be expanded from a simple systematic review into a project that would have real clinical impact by helping clinicians, carers and patients to improve the way NIV is used. It’s the: “so what?” moment: how will your findings impact practice? This should ideally be pretty much straight after the project is finished, especially as patients don’t have time to wait for solutions.

One challenging aspect of developing the proposal was the finances, because as the idea expands you have to ensure that you keep within the budget and funding limitations of the programme. The RfPB team suggested we extend the timelines to allow for slippage, which has made the project much less stressful and ensures there is enough time to make sure the project has the desired impact.

We also worked with the Sheffield MND Research Advisory Group - a patient and public group that reviewed the application, helped with the lay summary and gave a lot of comments.

Leading the project

After we knew we’d been awarded funding, there was a period of time where we had to sort out the finances and also appoint new staff. We were lucky to have a student who made a start on the first phase which has meant we’re ahead of ourselves and this has resulted in our first publication and presentation at an international conference.

I share the lead researcher duties with a colleague at a similar level who has complementary skills. I think this has helped me to develop the project and share some of the responsibility and stress.

Leading the project is not as tough as I thought because you are employing professionals to do what they are trained to do. But you have to be organised and make sure people are keeping to task. Delegation is a real challenge early in your career: you can’t do everything and it can be hard to let others get on with things and also to make sure they understand what is expected of them. However, it’s been great to see it take shape and see the results emerge.

Advice for early-career researchers

Think about your collaborators early. Chose people with whom you enjoy working and who will deliver on the project. If you aren’t an expert in something, get someone who is: you can’t do everything yourself!

Give yourself plenty of time in the grant to allow for simple things: holidays, problems, breathing space. Draw up a timeline of exactly what you will do at each stage to help you work out the costs, and keep updating things as your project develops. Talk to people about your work, they’ll give you ideas and share their knowledge. Make sure you commit enough time to the project: you need to deliver!

Be enthusiastic about your work and share this with others at every opportunity and through every medium (social media, professional and lay talks, websites, lay summaries etc.). We have been lucky to be approached by many people who are interested in our work and keen to offer their help.

Plans for the future

We are well underway with the project.  It has been presented at several international conferences and two papers have been published. You can read about our progress on our website.

It’s early days yet but I hope the impact of our research will be pretty wide and the findings will support other grant applications. We hope to deliver a practical and useful tool that staff will use to help people get the most out of their NIV machines. Watch this space!

Find out more about how to plan for impact in your research.