S3E11 NEU: What’s on the research horizon with Associate Professor Sandra Neate

Geoff Allix  00:01

Welcome to Living well with MS. The podcast from Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I’m your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don’t forget to check out our show notes for more information and useful links. You can find these on our website at overcoming ms.org/podcast If you enjoy the show, please spread the word about us on your social media channels. That’s the kind of viral effect we can all smile about. Finally, don’t forget to subscribe to the show on your favorite podcast platform and so you never miss an episode. Now without further ado, on with the show. Dr. Sandra Neate is a clinician researcher who is head of the neuro epidemiology unit or NEU within the Melbourne School of Population and Global Health at the University of Melbourne in Australia. The NEU researches lifestyle related risk factors in MS and health outcomes and the experiences of people who adopt lifestyle modification. The NEU is also developing a researching novel ways to deliver evidence based information about lifestyle modification to people with MS including online modalities. Sandra’s personal research interest is in talking with people with MS and their families regarding the experiences of lifestyle modification. Welcome to the program. Dr. Neate, or may I call you Sandra?

Sandra Neate  01:30

Of course, Geoff. Thank you.

Geoff Allix  01:32

So you’re presently head of the neuro epidemiology unit at the University of Melbourne or the NEU I’m glad to say NEU because neuro epidemiology definitely. Can you tell me what the NEU actually is?

Sandra Neate  01:48

Yes, they were quite happy to call it the NEU too, it is a mouthful. The neuro epidemiology unit is a research unit that sits within the Melbourne School of Population and Global Health, which is also a little bit of a mouthful at the University of Melbourne here in Melbourne, Australia. We’re a small group, relatively small group of researchers, there’s nine of us who come from clinical and research backgrounds. And the research backgrounds vary between sort of neuroscience and epidemiology which looks at how often diseases occur and different groups of people and why. We have been there for five years, and we were set up with some very generous philanthropic funding from people with MS who’ve had experience with the Overcoming MS program. And our aim is really to research the risk factors that are known to influence the development and the progression of MS and how the modification of those risk factors, those lifestyle factors can affect health outcomes. And so we look at specific outcomes in MS like depression, fatigue, disability, but we also focus a lot on quality of life that is, you know, people’s experience of their day to day lives. And we believe that it’s extremely important the way a person experiences their life, they may have symptoms, or they might not have symptoms, but their own personal experience of that is really what matters the most. So that’s who we are. And what we aim to do. There’s other things that we’d like to undertake, as well as that sort of major focus. And we also do some work, where we talk to people or examine their written comments and try to gain a deeper understanding of people’s experiences of lifestyle modification. And this is where we gain insights more into the way people feel and their experiences and their perspectives, which is a sort of a different kind of information, as well as just sort of harder outcomes of health outcomes like disability and depression and fatigue.

Geoff Allix  03:58

So you’re actually interested in this sort of subjective rather than just the objective. So you’re not looking because everyone else seems to be like, what’s your EDSS score, or really, like, define number that they can tell how many lesions are in this area of your spine or things like that? So you’re also interested in actually, how are people doing? How are they feeling?

Sandra Neate  04:22

Yes, that’s right. And personally, that’s, that’s my area of interest. And what I the the research projects that I tend to undertake those, what we call qualitative projects, where we, we talk to people, we also have talked to people’s partners about their experiences of lifestyle modification and MS. And so we tend to try to broaden out the focus, I mean, all those hard outcomes like you refer to, you know, your EDSS and all that are very important, and we certainly do examine those in great detail. We don’t look at MRIs and things because all our information comes from patients. It’s all patient reported data so we don’t get MRI data and other things like that. But we do look at those outcomes like you described. But we also have this interest beyond that, or as well as that in people’s experiences and the insights that they are able to give us.

Geoff Allix  05:21

And it’s the NEU you carrying on the research studies that were begun by your predecessor, Professor George Jellinek, who people might have heard of, such as HOLISM, and Stop, MS.

 

Sandra Neate  05:33

We are, I mean, HOLISM and Stop MS are still probably our, what we call our flagship projects, our flagship research projects, the holism. One is the really big one. And so far, we’ve published about 40 peer reviewed papers from HOLISM. And as people, I don’t know whether they’re familiar with HOLISM, but it’s a survey of originally about two and a half thousand people with MS from all over the world who answered this question questionnaire about their health and their habits. And we’re now at the 7.5 year time point where the people who’ve participated in the study have provided data to us at baseline 2.5 and 7.5 years. So we now have this incredibly rich data about what people do and what their health outcomes are, over time, related to what they do with their life. So we can look at things like their diet, and how much vitamin D they receive, and how many stress reducing activities they undertake, and look at the impact into the future, on their health outcomes, such as depression, fatigue, disability, and other things like that. So there’s some really important studies coming up, or that have that we’ve published recently and that are in front of journals at the moment, I think probably the most important one is one that we’ve just completed, which is called higher quality diet and non consumption of meat are associated with less disability progression. So we’ve found that over the 2.5 years that a higher quality diet like the Overcoming MS recommended diet, and in particular, the non consumption of meat, people who adopted those behaviors that, at the beginning, 2.5 years later, have a significantly less disability progression. So some really important findings coming out of those studies where we look at what happens to people into the future, what we call prospective studies,

Geoff Allix  07:43

What’s the overarching game of the NEU as a research body?

 

Sandra Neate  07:51

Well, our aim is at the moment, to to look at the impact of lifestyle modification on people with MS on their outcomes and their quality of life, and to understand their experiences, as I said, but we also want to look into in the future, which is these are our sort of future directions. Look at how we can best deliver the information that we have gained from the research that we’ve already done. So the things that we’ve learned about what can affect people and what those lifestyle behaviors can result in, we’re attempting to determine what is the best way to deliver that message to people. So in the past, we’ve delivered face to face residential workshops over a period of time, the Overcoming MS workshops where this information has been delivered to people, and we’ve researched, which is the Stop MS project that you referred to. We’ve researched how attendance at one of those workshops influences people’s outcomes over time. And we’ve had some interesting results there, of course, about improvements in quality of life and all those other outcomes that I described, that people who attend and continue to adopt the modifications that are recommended. But obviously, that’s a very time intensive way of delivering education a face to face intervention with a certain number of people who can attend at one time. So we’re also investigating an online course that delivers the same information just on the internet in the form in a similar format to how the information is given during the workshops, but, you know, online forum so that’s just about to go live our MS online course. And we’re initially doing a feasibility study looking at how to deliver the course and how it’s best delivered and how people experience the course, and then we’d like to roll out the course on a bigger level on a greater level and find out not only what people’s experience of the course is, but does that change their behavior? And does it affect outcomes like we believe the residential retreats have done in the past. And so that’s one big project. And we’re also looking to do a similar thing, interestingly, in a collaboration with the UK MS register, which is an enormous database kept over in the UK, and the Imperial College London, and we’re hoping to do a trial in a similar way, looking at the delivery of an educational intervention and seeing how that affects people’s outcomes. But also looking at how well people take to that intervention, whether they enjoy it, what they get from it, and whether they change their behavior, and whether that change in behavior is continued into the future. So they’re really interesting questions that we want to know. What’s the best way of delivering information? What’s the best way of changing people’s behavior? How do people maintain that behavior? And what are the outcomes if they’re successful in doing that? So those are the main questions that we’re looking to answer.

Geoff Allix  11:15

Just a quick reminder to our listeners, that World MS day is May the 30th. So consider market by donating to OMS, and supporting the work we do to improve the lives of people with MS. You can make a donation online on our website at www.overcomingms.org. Thank you for your support. I mean, you mentioned there’s a team of you working there. So who are the researchers that work with any you?

Sandra Neate  11:43

Apart from me and I come from a clinical background as an emergency physician, believe it or not, but have transitioned over many years into research with an interest in these chronic conditions and the management of them by lifestyle modification. We have Associate Professor Tracy Weiland, who comes from a clinical psychology background actually, but has worked with us for many years. We have three senior researchers Nupur Nag, Steve Simpson, and Jeanette Reece, who come from epidemiological and neuroscience backgrounds. And we have some junior staffs and research assistant staff who do a lot of the work with analyzing data and cleaning data and preparing research project applications and ethics applications and all the hard work in the background. And those people Will Bevans PhD student, we have Alex Fidao and Maggie Yu and Xin Lin. We have a very diverse group of people,

Geoff Allix  12:54

You haven’t forgotten anyone there?

Sandra Neate  12:57

I hope I haven’t forgotten anyone. I should have written them all down.

Geoff Allix  13:02

And so the MS online course and it’s really interesting, particularly at the moment as we’re still going through, lock down to various parts of the world. And I think the idea of having big face to face meetings, is probably some way off. So what do you think the future impact? Or what do you hope the future impact of that will be?

 

Sandra Neate  13:27

Well, I think it will be a resource that could be widely disseminated, you know, amongst the MS community, and would be there for anyone who would like to undertake a course that is likely to lead to them being able to change their behavior and also just to understand the what risk factors there are for the development and progression of MS and how they can modify those risk factors and how they can improve their lives, basically, and improve their health outcomes. So that’s what we would hope that this message is more widespread than it can be in a face to face version, that it’s widely available, accessible, free, all those things that can help people access the information and make choices about their lives that might change their outcomes.

Geoff Allix  14:21

And you also mentioned collaboration of the UK MS Registry, which sounds amazingly promising as well. So what are your expectations of this relationship? And how can it elevate the cause of lifestyle intervention, or modification?

Sandra Neate  14:38

What we’re hoping to do, it’s a bit of a long term project. The first step is to do another observational study, that is to collect data from the people who are already within the UK MS Register who are already contributing their data on an annual basis and asked them to quit assumes that the UK and is registered normally asks them about their health and their behaviors, and add a few more of ones of interests that we in the NEU are interested in. We’re also interested in things like a sense of mastery, how much control do people feel they have over their lives? How many stressful life events they have? Those sort of quality of life things that we were describing before. So we’re going to add a few more questions into their normal baseline questionnaire, and follow people over a year to find out like we have in HOLISM, what their outcomes are. And then what we want to do is a trial where we introduce an intervention, a bit like the MS online course, or perhaps a Zoom intervention, or perhaps a face to face intervention, if that’s possible, to deliver the Overcoming MS program to them, and see whether that changes people’s behavior and whether that changes their outcome. So we’ll have all this information from the one year study that precedes that trial. And then we can look at what happens to those people. So we’ll have a lot more objective data, a lot more data and data from another population, you know, a very, very cohesive population that the UK MS register has developed over many years. And of course, from our point of view, it’s exciting to collaborate with Dr. Richard Nicholas, who’s at Imperial College London, and Rod Middleton from who runs the UK MS Register runs the data. He’s from Swansea. So for us, it’s also academically exciting to have those collaborations and affiliations and to have their knowledge and enthusiasm, added to ours, that’s a very productive relationship. And one that we’re excited about. It was, unfortunately stalled through COVID. But we’ve just got really up and running again and have met everybody online again, and got the whole thing, trying to get the whole thing a kickstart again,

 

Geoff Allix  17:08

And what’s on the horizon, the NEU and what sorts of projects and collaborations are you hoping for the future?

 

Sandra Neate  17:16

Well, really, the two major ones are what I’ve just described the MS online course, because that’s just about to launch. So we want to do the big trial, of course, as well. And the UK MS Register is the big one, too, because they’re really both in their infancy there. We’ve got them sort of ready to go, but they haven’t started. So they’re the big projects into the future. We have other interests as well. We’ve got some interest in Parkinson’s Disease, as well as MS. And we’ve got some projects going with a group called the Roy Morgan group in Australia who do a big population based survey there actually, market survey type people, but they’ve got an enormous amount of data. And we’re looking at behaviors and things of people with neurological conditions. We’ve got other qualitative studies looking at the influence of a meditation course on people’s lives and those sorts of things. So we’ve got some other projects running in the background. But our HOLISM 7.5 year data and our MS online course now UK MS Register are our big projects going forward into the future that have the potential to yield some very exciting results. And not only exciting results, but results that will be much more not accepted, but randomized controlled trials are the sort of gold standard in terms of evidence. So it will build out evidence base enormously to have results from randomized controlled trials. And will have an impact on on the neural, neurological world, so to speak, that once those results are in if they are what we hope they might be or what we expect, they could be very important to the management of people with MS.

 

Geoff Allix  19:13

So if people are interested in MS online course, where would they find out more information about how to take that course in the future?

 

Sandra Neate  19:21

Well, we don’t want them to know at the moment because we want to run our

 

Geoff Allix  19:25

No one’s listening. It’s just between you and me. That’s

 

Sandra Neate  19:29

We want to run our intervention first. So to run an effective randomized control trial, you have to have people who don’t know about it, or you don’t know what the course is about to deliver to them. And so they’re in a control group and an intervention group. So once we’ve done that trial, then we would hope that that we can circulate the message broadly about how to access it and how to engage with it, etc. But I think we want to get that done as quickly as possible so that it can be put into circulation. But at the moment, we’re still testing it because before we release it to the general population, we’d like to be confident that it’s number one, accessible and usable. And that, that it works and that people are benefiting from it.

 

Geoff Allix  20:14

And you’ve mentioned OMS a few times. So how does the NEU engaged with OMS?

 

Sandra Neate  20:23

On many fronts. Number one, the evidence that the NEU provides underpins the Overcoming MS program that OMS, you know, is is the fundamental part of Overcoming MS charity that it’s the recovery program, the seven step recovery program. So we provide the evidence that underpins that. And we provide updates in research that can be circulated to the Overcoming MS population. And OMS assists us by supporting financially the open access publications of our work, meaning that these days journals charge you to put your work online, so that someone can click on your article and read the full text of the article. So that’s quite an expensive proposition. And OMS supports the open access publication, meaning that anybody who wants to read the article, whether they’re a neurologist, or a member of the public, or someone with MS can click on the article and read it, not having to have special access through university library, etc. So that’s an enormous assistance to us, and to the MS population to have that information freely available. We also engage in forums like this, and with blogs and other other things like that. We’ve had a long relationship with OMS. And the two things are so closely intertwined in some ways that it’s hard to describe, because there’s this two way flow of information. And it’s just a relationship that’s existed for a long time. And although the NEU is clearly a very separate organization, and when it comes to being a research body, you must be very clear that you have a research agenda that is not influenced by external parties. But you know, there’s a clear relationship there that I think that’s beneficial to both parties.

 

Geoff Allix  22:31

And just the final question, in your opinion, what do you think the next generation can realistically expect for MS treatment?

 

Sandra Neate  22:42

I think there will be an enormous acceptance of as there is in many other diseases now, like in heart disease, and stroke and things like that, that what you do, what the choices you make with your life, your diet, your level of activity, whether you smoke, whether you drink, all those sorts of things will be the key to you remaining well. I mean, we all have an enormous influence on our own health just by what we choose to do every day. And I think that will be the key message that underpins the management of any chronic condition, any autoimmune condition that influenced this condition yourself by the choices you make daily. I think there are many treatments emerging on the horizon. I’m no expert in the pharmacological management of MS. But I know that the pharmacology, pharmacological management is becoming more and more promising and more and more effective. And so I think that people can realistically hope for good outcomes after being diagnosed with MS if they take the time to understand the evidence and the possibilities that are there. And they make informed choices that they can expect and they are assisted by their health care professionals. Whoever they may be, there may be a very broad team of healthcare professionals, they can realistically hope for a long and healthy life.

 

Geoff Allix  24:15

With that, thank you very much for joining us on living with MS. Dr. Sandra. Neate.

 

Sandra Neate  24:21

Thank you very much, Geoff. It was a pleasure.

 

Geoff Allix  24:27

Thank you for listening to this episode of Living Well with MS. Please check out this episode show notes at overcomingms.org/podcast You’ll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at [email protected] We’d love to hear from you. You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS is kindly supported by grant from the Happy Charitable Trust if you’d like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at overcomingms.org/donate Thank you for your support. Living well with MS was produced by Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity. We are here to help inform, support and empower everyone affected by MS. To find out more and subscribe to our E newsletter, please visit our website at overcomingms.org

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