‘It can feel very isolating’: Why brain research is a team sport

20 May 2024

Image: © Benjavisa Ruangvaree/Stock.adobe.com

As the FutureNeuro research centre enters a new phase, we hear from the people involved about why brain research matters.

“I’m a person living with MS (multiple sclerosis).” Amy Holtby doesn’t often lead with this when she meets new people. “I don’t think it’s the most interesting thing about me,” she says. But Holtby is meeting me to talk about her role on the Patient and Public Involvement (PPI) panel at the Science Foundation Ireland (SFI) FutureNeuro Research Centre.

She describes her “somewhat serendipitous” involvement with FutureNeuro. She went along to a public engagement event, a music recital, and got talking to centre members.

At the time, she was training for the Dublin marathon. “I was really keen to do something useful with that opportunity,” she says. “I’m not really public about my MS, I don’t lead with that.” But she was so impressed with the work of FutureNeuro, (she describes herself as “a bit of a FutureNeuro fan girl” and had been following their work for a while), she decided to run for the centre and raised about €5,000. “I really wanted to raise money for the researchers because I’m a researcher and I’m very science led. I could see that the funding they get, they really turn it into impact, so I was very motivated that if I was going to do something hard, I wanted it to be worthwhile.

“Chronic illness and MS in particular really can affect your energy and how much you can do,” Holtby explains. “If you’ve got limited energy and limited resources, I want to spend that on the things that matter.”

Phasing up

Holtby isn’t the only one who thinks the work of FutureNeuro is worthwhile. Just last week, the Irish Government announced funding of €104m for four SFI research centres, including FutureNeuro, with an additional €21m from industry partners. This funding will support the launch of phase 2 of the centre which expands its remit.

FutureNeuro director Prof David Henshall tells SiliconRepublic.com that the expansion came about because of the success of the first phase which launched in 2017. “The scientific advances we’ve made, the impact we’ve had on how care is delivered in our hospitals and the wider ecosystem … There is great momentum and a collective wish to build on that,” Henshall says.

The aim of FutureNeuro is to deliver diagnostics, treatments and digital healthcare solutions for neurological, neurodevelopmental and neuropsychiatric conditions. Henshall says phase 2 “is all about scaling up”.

“We’re bringing in new science and teams to join us, plus a larger operations team that will, together, accelerate the pace of the work and bring us capabilities we didn’t have in the past.

“It’s also about bridging neurology and psychiatry. Too often the clinical care pathways run separately, whereas we see these as essential to tackle together. Likewise, the brain and immune system, usually studied by different branches of biology, are brought together in phase 2. We’re looking at how the two systems communicate in health and disease and how to turn this knowledge into medicine.”

‘A team sport’

It seems almost inevitable that the centre would expand its remit when you consider the multidisciplinary approach of the research undertaken there.

For Prof Lorna Lopez, a member of the FutureNeuro research team based at Maynooth University, the complexity of research undertaken at the centre means that being able to draw on the expertise of your colleagues is incredibly useful.

Speaking about neuropsychiatric disorders, Lopez says: “There are so many factors that could contribute and so many factors that need to be thought about when you’re doing research. And the only way you can do that is with a multidisciplinary approach. And that’s why FutureNeuro is so excellent in terms of the different technologies, the different skills [that the centre brings together].”

FutureNeuro team members pose at a conference in a dark room.

Susan Byrne (second from left) and Lorna Lopez (third from right) at the FutureNeuro phase 2 launch. Image: FutureNeuro

Lopez joined the centre for phase 2. She says that the expanded plans “tied in really nicely” with her research, which looks at the genetic basis of neurodevelopmental and neuropsychiatric conditions. One of her projects investigates the genetic links between autism, bipolar disorder and sleep and circadian rhythms, which overlaps with other FutureNeuro researchers’ work on circadian rhythms and epilepsy and other neurological conditions. This means that Lopez has access to a network of researchers, clinicians, bioinformaticians and others to get feedback and insights to progress her projects.

Similarly, paediatric neurologist Dr Susan Byrne describes the multidisciplinary team at FutureNeuro as a “lovely synergy” of scientists, doctors, data specialists and others, who work together and “everyone learns from each other”.

A key example for Byrne, who works at Children’s Hospital Ireland and at the RCSI University of Medicine and Health Sciences, is when a patient or their family asks her a question that isn’t really in her area but she thinks is really interesting. “All of a sudden you have this network of amazing scientists [at FutureNeuro],” she says.

“If I wasn’t involved with FutureNeuro, it would be very hard to translate some of those questions to the basic science to get an answer. Whereas it’s really easy to bring together really interested people and then projects can kind of take stream from there.

“And I think there’s a huge amount to be said for having lots of people with different skillsets in the one room when you’re designing something because you might have an idea, they might have a different idea, and then that little idea in the middle that may have come from the clinic will suddenly become a really broad idea. And it’s much better for discovery science and for the patient’s condition.”

Through her clinical work, Byrne is in a position to see the positive effects of research in action. Her role in FutureNeuro is to help with diagnostics. She talks about setting up the CINDI register for children who have neurogenetic conditions. With the register, children with a genetic diagnosis can be recruited for clinical trials or precision medicines much quicker, and “that’s really important for families”, Byrne says.

However, of the children Byrne sees in the clinic, fewer than half of them have a genetic diagnosis. And this is where the benefit of a centre like FutureNeuro can really be seen.

“When I see a child in the clinic, there are lots of tests that we can access but often we can’t make a diagnosis on the basis of those. And that’s the beauty of the FutureNeuro 2 diagnostics programme, which looks to move beyond what’s currently available for clinical diagnostics.”

With access to more advanced testing and technologies, the team at FutureNeuro can help more patients get a diagnosis. The field of genetics in particular is moving really fast so this enables patients to get the benefit of the latest research much quicker.

Henshall is excited about the breakthroughs that will be possible in the next few years. “The field as a whole and our centre specifically are on the cusp of solving some of the biggest puzzles in brain function in health and disease,” he says. “But we have a long way to go. The reality is we still have almost nothing that works for most brain diseases and diagnosis remains a drawn-out odyssey for many.”

Putting the patient in the centre

Henshall says that one of the goals of phase 2 is to bring “patients deeper into the centre, helping us with experimental design, evaluating our progress and communicating that to the public, funders and policymakers, so that we align and deliver research that meets their priorities”.

Everyone I spoke to for this article emphasised the importance of PPI to their work and to FutureNeuro. The theory behind PPI is that the best research is carried out with or by members of the public rather than to or about them. According to the HSE, PPI ensures research investigates what patients feel is important and helps improve research outcomes.

Lopez says she embeds PPI into every aspect of her research. For example, there are members of her team who are “lived experience experts”, that is, people who live with or care for people living with conditions she studies. Another example is working with a FutureNeuro PPI panel member, who met Lopez’s summer interns to talk about her experience of living with epilepsy. The students’ work is mostly computation-based, Lopez says, so “for them, it was a huge insight into why they’re actually doing this work. That was really valuable for all the researchers in the team.”

Lopez believes that to do the best work possible, you need to have everybody on board. “We need input to make sure we’re doing the right thing, asking the right questions and practical things like our language statements, how we’re managing data.” PPI panel members provide input at every stage of the research process, she says.

I ask Byrne if she thinks PPI is a branch of the overall process and she replied that it is the middle, the core of the process. She says her team meets with members of the PPI panel to “pitch ideas to them and see what their thoughts are”.

She gives an example of how it can be valuable: “When we’re designing studies, sometimes someone might have a really set idea of what project they want to do. But then, we’ll ask some families how they feel about this. You know, if we’re going to do a test three times a day, the families might say that’s not very convenient.” This kind of feedback gives the team an insight into the realities of testing and trials and research for patients.

“It’s super important to have the families involved,” Byrne says.

Lived experience

As important as it is for researchers and clinicians to engage with patients and their families, the other side of that is patients and their families giving their time and energy to engage in often lengthy research projects.

Holtby feels grateful that she is currently at a stage with her MS where she is able to be involved with advocacy and fundraising work. “I know that if I wasn’t able to do this, I’d be relying upon someone else being able to do it, and so if I can use the skills and the experiences I’ve had, and learn from the mistakes I’ve made, you know if I’m able to use my energy to help other people in some small way, I think that’s the best kind of thing you can pass on to other people.”

Amy Holtby holds up a QR code for her fundraising effort after running the Dublin city marathon. She wears lavender active wear and stands in a park.

Amy Holtby after running the Dublin marathon. Image: FutureNeuro

Holtby is a researcher herself with a PhD in equine science. When discussing her role with FutureNeuro, she says, “I wear both hats. I wear a scientist hat and I wear a patient hat.” This dual position gives Holtby a uniquely powerful voice in speaking up for patients and ensuring they are central to the work of FutureNeuro.

“I’m really passionate in both my professional life and in this [patient advocacy] … about access to information and education,” she says.

Holtby was diagnosed with MS about five years ago. “I feel like I would be misrepresenting other MS patients if I were not to acknowledge in the first instance that everybody’s experience is entirely different,” she says. “I am extremely well and that is, you know, I’m extremely lucky, but it’s not entirely luck.”

At the time she was being diagnosed, Holtby was just starting out on her research career and learning how to find and critically evaluate scientific information. Being able to access and understand the latest research about her condition meant she was able to take back a sense of control. “There were things that I tried that I felt, well they can’t harm me but they might help me, and it has turned out since then that some of those things are now recommended.

“I think I was really, really lucky that I had this access to information and I was really lucky that I had doctors that really saw what was going on and made good decisions.”

Holtby describes herself as lucky a lot during the interview but it’s her insight and tenacity that really stands out. Receiving an MS diagnosis and at such a young age – it’s hard to grasp how difficult that would have been for her. “It’s had a huge impact and changed my perspective and my outlook entirely. I think it brought with it a lot of worry and uncertainty, a lot of fear,” Holtby says.

“It really was challenging to my identity … I think for me some of the biggest impacts have probably been around feeling like it was potentially going to put limits on me, but I think I took a very proactive approach.”

One of the challenges of neurological conditions is that they are often invisible. “It can be very isolating,” Holtby says. “I had a lot of visual problems and I used to get on the bus and I’d find it really difficult to even see to the back of the bus but it just would have looked like I was drunk … or, you know, it doesn’t look like there’s anything wrong with [me] but my body felt like it was made of lead. You know there are lots of things that are not perceivable to people, and I now realise there are people walking around with those types of symptoms with many conditions.”

Looking to the future

Holtby takes the time to share her experiences with the FutureNeuro team but what does she get in return?

Insight into their research processes, certainly, and the satisfaction of being heard and her opinion being valued. “It’s amazing to feel like a part of their team,” she says, “because when you’re diagnosed with something, it can feel quite dark … and if someone had told me when I was being diagnosed and I was sitting in the hospital what I was going to be doing a few years later, I would genuinely not have believed them, and a huge part of that is thanks to FutureNeuro and the way that they’re involving people.”

A man sits with a wired device on his head while two men and a woman look on to hear about FutureNeuro research.

David Henshall (left) at the FutureNeuro phase 2 launch. Image: FutureNeuro

Henshall says there are “immense opportunities” for the centre to deliver innovations in technologies and therapies, but the scale of the task is huge. “There is still so much more to do,” he says. But he believes that the people and resources behind phase 2 will ensure that FutureNeuro will become a “world-leading research centre with national and global impact”.

And Holtby, for one, is going to be right there to witness it. “So, I think you know my experience, it was real shock to the system and it took me a long time to make peace with it. It wouldn’t be truthful to say I’m 100pc at peace with it all the time, things come up, things happen, and I feel some of those fearful things all over again. But I think since being involved with FutureNeuro, it kind of gives you hope, and it makes me feel more optimistic about the future and where things will go.”

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Rebecca Graham is production editor at Silicon Republic