Lost in translation: why research innovation doesn’t always reach people with MS
Professor Roshan das Nair tells us how his work makes sure the results of MS research reach people in the real world.
Even with so many disease-modifying therapies (DMT) available for MS nowadays, we still see people experiencing significant disability. We know fatigue and cognitive difficulties (like problems with attention or memory) are, for instance, still the biggest reasons people drop out of work.
My research focuses on non-drug interventions for MS symptoms. Therapies that don’t involve medication, like psychological or rehabilitation programmes.
It’s sometimes considered less ‘sexy’ research, but it can make a real difference to people’s lives. It might mean someone can walk down the aisle with their daughter at her wedding. Or remember to pick up their kids from school. Or stay in a job.
Moving beyond effectiveness
We’ve started seeing good evidence from research that non-drug interventions for things like cognitive difficulties do work.
Our cognitive rehabilitation programmes help people recognise when their cognitive symptoms are occurring in their daily lives. And we help put strategies in place to cope.
Yet people aren’t actually getting these programmes. That’s the gap I’m focused on now. If we know something’s effective, how do we implement it in the real world?
NHS under pressure
For a lot of research innovations, the healthcare sector is responsible for delivering the intervention. Commissioners need to be willing to pay for it. Providers need to figure out how they can deliver it. Clinicians need to be comfortable delivering it.
But we all know much of the sector is at breaking point. Everyone’s overstretched. Trying to add in more responsibilities isn’t always wise.
Solutions might be things like changing who does a particular activity. For example, screening people with MS for cognitive symptoms is typically done by a clinical psychologist or neuro-psychologist. There’s a very limited number of those specialists available.
This means long waiting-lists, and for some people, their condition getting worse while they’re waiting.
NEuRoMS study
I’m leading a study called NEuRoMS. We’ve developed digital screening for MS cognitive symptoms. And it’s done by people with MS themselves.
We can then evaluate the impact of rehabilitation for people with mild to moderate cognitive difficulties. This group is most often left out. So that’s another potential solution: not only asking, does this intervention work, but also who does it work best for?
We’ve implemented the cognitive screening in seven NHS trusts, where it’s become part of usual care. We’ve screened about 7,000 people with MS now.
Find out about the study on the NEuRoMS website
Building in solutions from the start
When we design programmes like this, we should figure out what might be a barrier down the line. So we can build in solutions right from the start.
We faced some reluctance to embed our screening in clinical practice. Some clinicians were worried it could make people worse. What if it alarmed them or made them feel less confident in their cognitive abilities?
So we did a study to check this. Thankfully, we demonstrated doing the screening doesn’t have that risk. If we hadn’t taken this approach to test issues and reassure stakeholders, the whole thing could have ground to a halt.
Raising visibility
Ultimately, even if you have a tool or technique that works really well, it’s not miraculously going to be absorbed in routine care. If we want large-scale, meaningful change, we need to make sure everyone who matters is actively involved right from the start of every research project.
We fought hard for a long time to raise the visibility of non-drug interventions. Now we need more focus on health services research, to make sure effective interventions reach the people they’re intended for.
This blog came from an article in our MS Matters magazine. You can explore the full back catalogue of the magazine.
You may be interested in
Join the Research Network
Our Research Network make sure all the research we fund reflects the needs and interests of people living with MS. And they help us talk about it in a way that’s accessible to everyone.
Anyone who lives with MS or cares for someone who does can get involved. It doesn't matter where in the UK you live or how much research experience you have.
