How is MS care changing? A neurologist panel discussion
A deep-dive discussion with neurology experts about treating MS, including innovative research into the future of MS services.
MS Plus Executive Manager and Nurse Practitioner, Jodi Haartsen chats with Information Officer at MS Trust UK, Simon Webster about navigating the multitude of information found online. An important discussion around how to differentiate factual, evidence-based information from opinion or lies and strategies on how to navigate the internet safely.
MS Plus acknowledges the traditional owners of the land this podcast has been recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their elders past, present, and emerging.
Jodi: So let's talk about the person with MS. I was the one delivering the message, I was the one delivering the content for someone about what MS is going to mean for you.
Then, over time, it really quickly changed to, before I'd even got a chance to see people, they'd already put it into Google, they already had a bit of a base information that was guiding them and so, that really meant that I had to change my practice as well, because I was used to giving this information, trying to make it meaningful for people.
So, how do you feel that impacts people? How is it, in terms of what you know now in your 20 years, in terms of how that early information impacts people and what would be your top tips, I guess, or your guidance for people to say where to look and how to do that in the early days?
Simon: Yes, I'd very much recognize what you're saying there as well. When, the basic level of question that we get now is several steps up from the basic level question we were getting 20 years ago. It's the natural inclination, isn't it? You go online and you type in and you see what comes out, and, if you're lucky, it's something helpful. If you're unlucky, it gives you a tale to chase around and, some of the conversations are dealing with misconceptions that people have started with, perhaps, as well.
I know there was always the thing sort of, don't use Dr. Google, but you know, people do, and you can't blame anybody for doing that, but I think I would advise somebody who's thinking of doing that is to pick and choose where they take the information from. And, I think at a newly diagnosed level I would encourage people to look at the national MS charities, MS Trust, MS Society over here, MS Australia and the equivalence of whatever over in Australia and, go to organizations that will have filtered the information and collated the information and thought about how to present it in a way that is accessible and not overwhelming, and not frightening for people at that point.
It may well be frightening because of the nature of the diagnosis. They will have picked out the information that is relevant for that point in time and, so people won't be presented with all the potential sort of dark corners and worse case scenarios that will naturally be going through their heads as well, but will be given a good sort of solid grounding in, what is MS?
And, What's it mean for me at the moment? Then use that as the basis to talk about that information with their MS nurse, with their neurologist, with their MS team, and use it as a building block, as a way to have informed conversations.
Jodi: Yes, I agree that the messaging about not using Dr. Google, The majority of people I found in my experience were pretty good at filtering and pretty good at looking at it and saying, well, this information's got some problems with it. We're so used to all that information now and filtering it for ourselves.
One thing I found quite interesting as well, was that people with a newly diagnosis, you talked about the information being frightening, and that was certainly really my experience as well. A lot of people would have a quick look and then think, that's all I can take on.
Jodi: And I said, that's okay. You are not the one who has to get all the information. It's there for you when you want it, when you need it.
Jodi: But, you don't have to get all the information at once. So, do you find that when you look at who's accessing your information about newly diagnosed and when you get feedback on that, how do you deliver your information so that it's not overwhelming.
Simon: Yes, there are different styles in information gathering from the sort of people who want everything on day one to the people who are almost in denial, but, will peek from behind the sofa every now and again, just, and I'm picking information up like that, and often we found in partnerships or whatever, the one partner will be behind the sofa and the other one will be the information gatherer.
The more abstract questions somebody might be happy in gathering information, then something specifically happens, like a relapse or something, a particular crisis, and then they might want to shy away from the information. I was talking to a nurse recently, broadly on this topic, and she was saying that she's naturally an information gatherer, but when a family member was diagnosed with something, not with MS, but was diagnosed with something, suddenly she couldn't look at the information because it was too raw and too close and, all of that's fine.
People are going to change in their information needs from moment to moment, and it'll probably be a surprise to the individual that, how they respond to the information. So, be aware of that when trying to present the information as well, particularly through the helpline, to match the information to the person's information needs and also, that person's ability to deal with the information at that time as well. When it comes to presenting our newly diagnosed information, we worked very closely with people with MS on their information needs around diagnosis, and instead of presenting a slab of information about MS we did work hard to sort of chunk it up into bite size pieces that people could pick and choose from.
So, a much more modular approach, if you like, so that people could find their way through the information at their own speed.
Jodi: From your perspective, has it changed a lot over the last 10, 15 years in the information needs and information delivery?
Simon: The growth in use of the internet has brought people who were wanting more immediate answers to issues, and I think social media has sped that up again, even more so, the information gatherers are wanting the information almost at their fingertips immediately, and social media again has also opened up mass information in the now, that it's, kind of peer lead, what topics are talked about, when you're talking on social media, and of course people with MS are not purely a medical case, they are people with lives, work benefits, families, all of these things as well as medical issues, and all of those get pulled into the equation and make the topics more multifaceted perhaps than they were in the past when there wasn't that level of interaction that we have with social media now.
Jodi: I guess that's a bit about how storytelling's become so important. Storytelling's become a way of people giving information and receiving information that wasn't available or wasn't really as much as a resource before social media became a big thing.
Have you seen any impact of misinformation, I guess, in terms of people not getting right information, do you think, there's more needs to correct myths and do myth busting now than there ever has been?
Simon: I think it has made it more prominent. In some cases misinformation and that's certainly true of misunderstandings, and kind of personal hobby horses, if you like, evangelists for particular approaches or particular ideas, have a platform on social media, which can be very persuasive.
I think everyone needs to be very careful about the conversations that they're having with people to, not saying that that people are necessarily wrong, but to consider carefully why the conversation is going this way and, whether there are other options and, to be much more critical in their thinking about the information that they're dealing with.
I mean, in the past it tended to be, this is a fact, here is some information here, you had to judge whether the person telling you the facts was reliable or not. But now, on a personal level, you're also getting people saying, this is a fact and, this is my opinion, and you're getting a whole load of emotion-based information almost really that's coming through and, I think that requires a different set of skills, to assess and sift through and, pick out what is useful and how you respond to what's being presented.
Particularly if you're part of a conversation where you are a dissenting voice amongst a lot of people who support a particular idea, it can sometimes be difficult to think, actually, I'm not sure I believe in this or, I don't believe in this to the extent that these people believe in it, and, I'm not fully going to engage with this if a group is there advocating a particular approach or not?
Jodi: What would you say to someone if they said, what skills do you think I need when I approach, I've got MS. Simon, tell me about how I'm going to approach the information? What skills should I be looking for? What mindset should I get myself into?
Simon: I think with information of any sort, but, particularly, I think online, is thinking, who is telling me this and why, and are they qualified to give me this information. That doesn't need to be, formal qualifications. It doesn't need to be the professor XYZ, from So and So University, but, if somebody's telling me about their experiences, can I validate their reason for telling me this information, but also why they're telling me this. What do they want me to do based on this information? Are they just giving me this information in its purest sense? Are they wanting me to start thinking in a particular way? Are they wanting me to buy something, or are they wanting me to avoid something?
And not taking everything at face value, being sceptical, making every piece of information justify itself, kind of running everything through a filter saying, Do I believe this? Why do I believe this? Why do I think this about this piece of information?
Jodi: Yes, and I think that's really important when you're listening to someone's stories. I would often encourage people to say, Why do I need this information? What's going wrong? or, Where am I at that I need this piece of information? Is it just because I have a doubt, I have a fear. And often that asking, Why? Why I need the information? Who's delivering it for me? You nearly need to get in the head space before you read medical information because it's so easy to be subjective to it and take it all on and to read something and say, That could happen to me. And I would often say to people, be careful because, once it's in your head, it can stay there. You know, once you've read all that information it could be too much, and it can be too overwhelming. I would often also suggest that people don't do it in the middle of the night because your filters aren't on, and you're not sitting there saying, okay, I need to get my filters on when I'm looking at information that potentially can be alarming, overwhelming, frightening, inaccurate, all the things that we know information can be.
One of the things I think that people really struggled with is, understanding research and I want to talk to you a little bit about how you've gone about doing that and how you would encourage people to search and know what is a peer review?
Simon: Yes, there is an awful lot out there, and, of course, the challenge of science is that it never stops and there aren't absolutes, and, over time, opinions may change and different studies may come to contradictory answers or, answers that seem to undermine what's come before. And, I know that people sometimes find that frustrating that, a couple of years ago you said X was good and now you're saying it's not so good. But it's important to recognize that science is always probing itself and asking itself questions and trying to build on itself and move forward. Ideally, it's going back to the source really, to the basic information where it started from but, as with other things, it's sort of thinking, “Who is telling me this?” and, “Why? Is this written by people who have expertise in the area? What is their expertise? Is it appearing in a peer reviewed journal?” So, it's gone through a panel of independent experts who tested the information before it got to publication. So, the information's as robust as possible by the time it's published.
Jodi: So how would people know that as a lot of articles that are published under the guise of research, it seems anyone can do research really. I had a little cue that I would say to people, if you're looking at it on Google Scholar, look how many people have referenced it.
Because if a lot of people have referenced it, it usually means that it's got credibility. There's lots of ways of determining credibility. If 2000 people have referenced this article and it's cited, which is means referenced, then it's got a bit of credibility
Simon: Yes, and I would also keep an eye on how many people are involved, a study of five people can give interesting information, but it's hard to extrapolate for wider numbers. If you're dealing with hundreds of people then it gives more confidence in the findings when it is done over a large population.
But equally though, bearing in mind that the results of a medical trial is the average across that number of people, it doesn't mean that that, whatever the outcome will be the case for an individual. It's just means across a large average of people, that was the sort of level it came to, and some people will do better, and some people will do worse. So, not seeing a medical trial as meaning, This will happen to me.
Jodi: Well, you talked earlier about skills that people need and I guess in terms of, that practical, How do I look at information? One of the things that people talk about is confirmation bias. Can you explain that to us and how that impacts when you are looking for information and how you use information?
Simon: Yes, confirmation bias is the phenomenon that we tend to look at information or look for information that agrees with a pre-existing point of view. We will be drawn towards things that agree with what we believe in, or which fit with what we were hoping to find. And, we all have sort of prejudices and, opinions and, points of view, so it's very difficult to approach information in a sort of completely pure zen-like state without any of these things. But it's also important to be aware of them and examine yourself when you're looking at information and perhaps, I chose this one over that one. Is there any reason why the one I didn't choose wasn't good? Or is it just because it's not saying the sort of things I wanted to say. So, it's a case of maybe challenging yourself to read things that maybe, contradict your biases and, I don't think you could entirely get rid of confirmation bars in one's approach to information, but being aware that that such a thing exists.
And social media does make that harder in that they will tend to present you with information that's similar to the information that you looked at previously, so I'll push that towards the top of the list or, present that thread for you. So, there is a risk that you end up in a little bubble of opinions that you already believe in and it's harder to get to the information that presents the other point of view.
Jodi: Yes. It's certainly not made any easier, I think that's really important. And, do you think there's any particular areas where that's a real hotspot, I suppose, in the management of MS that can really be, I guess, really challenging for people. Is there any areas that you would say that you even notice in your MS Trust information delivery, that there are certain areas that that's particularly challenging for people with MS.
Simon: I think it could be an issue when you are dealing with things that are considered a little bit left field so, for instance, in stem cells, HSCT recently, people travelling overseas for treatment, which I think has been the case in the UK and I believe also in the case in Australia as well. And you're constantly fed sort of information about people who've done that and have had successful treatment overseas and so on, you're not necessarily going to be presented with the people who've had a different experience with it.
And you might start to see a biased view of the topic based on what you've already searched for. And, there'll be other instances of, not that HSCT is necessarily a left field treatment, but it sort of started as something experimental that has been talked up by people who are very keen on it as an idea, but I mean there are other approaches that people might have tried. So, CCSVI I think, which was a thing a few years ago.
Jodi: That was a huge one in terms of where it really showed how, information was, CCSVI was an example, that information can really take people on a journey. Most experts don't come eagerly to presenting their point of view because often the news, the media, they're much more, the story appeals rather than the fact. And often the neurologists, in particular, were misinterpreted so often they were reluctant to speak about it at all.
And people would say, well, if you think that way, why aren't you talking on the TV? It was because their messages were so often misinterpreted. I remember in CCSVI that the neurologists in Canada were starting to get threats and had to close some services because the social media became really so big on that.
Simon: It seems to be less so; it seemed to have its moment and it has gone. But it was a reasonable theoretical idea that then sort of got rather blown up on the social media side of it and, that aspect of it, which, did sort of alter how an aspect of MS, and MS research for a for a number of years and, turned out to be a bit of a side road unfortunately.
But, I suppose it shows the power of social media to do that, but also, the risk of social media as well, in that a lot of people demanding something doesn't necessarily mean that they are right, or what they are hoping will be investigated will turn out to be right.
Jodi: I guess a lot of likes doesn't make it a truth.
Jodi: And a lot of likes is a good story and, it certainly, I think, reflects that what we were talking about earlier on, on why you want the information, who's delivering in the information. Those are such important questions to ask yourself before you read any information, in terms of saying, why do I want something better? or, who don't I trust here to say that I'm not on the best treatment for me, or this is not the best pathway for me?
And I think they're really good questions to ask yourself when you go about seeking information. And, most countries have an organization that do sometimes slowly and, sometimes a lot less glamorously, present information about where you can cross-check, and say, okay, let's cross check what they're saying about it. And yes, it's likely to be more conservative. That's the truth, but nonetheless be that, I guess, that not confirmation bias, that person who sort of presents the facts and presents the information, by and large to the very best of our ability to be completely unbiased.
Simon: Yes. It's sort of trying take the steam out of the conversation sometimes I think, is important. There are strong opinions, and people who advocate particular approaches, which is that you need people like that to drive change sometimes, but they're not necessarily best to give you an objective overview of the topic, to allow you to make your own judgment about what the situation is.
So, we have had several situations where we've gone into a topic and, tried to present it in as a dispassionate way as possible to balance some of the information that's also available out there.
Jodi: Yes, it can make us all seem quite boring.
Jodi: But certainly not in MS Trust so, wrapping up a little bit, what would you suggest for people, in terms of information seeking? And, my other question is, are there any red flags that you would say to someone, Hey, check yourself and know yourself. This is a red flag.
Simon: I think it's going back to reliable sources, and, knowing, as we said at the beginning, who is telling you the information and what angle they're coming from. It doesn't mean that, talking to people on social media, is bad and you should only talk to an MS organization or read medical journals, but being aware of how the information is being presented and the sort of information that you are getting from the different sources and, judging it.
The manufacturer will want to present their product in the best possible light and maybe play down the less useful aspects. But so long as you're aware of that, then there's useful information there. There's medical research might, or the MS charities, might give you sort of an objective point of view.
Some people might consider that sort of the establishment view and maybe have issues there, but that’s what they're going to present. What you get from people on social media will be a personal opinion, which you have to take into account where they're coming from. But equally, it'll give you an idea of how that topic feels to an individual who's gone through it as well and give you a personal aspect.
And I think gathering information is a patchwork of all of those sort of different things and seeing how they fit in together to give you the wider picture. If you talk to a doctor, they will give you a medical opinion about something, but you might want a social opinion as well from other angles and, picking and choosing the information, but being aware of where you're picking and choosing from, and how you're putting together that patchwork of information, I think is helpful.
Red flags. If something feels too good to be true, chances are it might be, and at the very least, corroborate it somewhere else and try and find other sources that tell you the same information and see if they present it in the same sort of way. But, yes, particularly bearing in mind if you're getting the information from people who are trying to sell you something because, even indirectly, of course they're trying to sell you something and, you don't advertise by being self-deprecating. You advertise by being bold. If in doubt, double check the information and triangulate things and, also being very aware of oneself I think is important. If you are faced with information, people's experiences of various things, they will be coming from a different place from where you are starting.
So, just because something has been wonderful for one person, it's important to think, Am I in a similar situation? If that happened to me, would that actually be what I wanted to happen, and how would I use that information? Something that we suggest sometimes, particularly in areas where there isn't a lot of definitive information, some of the lifestyle issues and diet and so on, is, check that what's suggested is safe, you're not going to poison yourself by taking supplement X, is it affordable? And then keep a symptom diary for a test period and, just sort of measure it how it affects you.
If the internet is for the people saying this is the best thing ever, give it a trial for a month or two. Keep a note of your symptoms day to day and any changes in activity, medication, other issues as well and, at the end of the trial period, look back and think, well, what did it do for me? And if it did make changes, keep on doing it. If it didn't, well, you know that it didn't work for you, regardless of what anybody else says, and move on and try the next thing. So, I think keeping one’s sense of oneself in the middle of all of this, because sometimes that can get swept away with strong opinions is an important thing as well.
Jodi: I think that knowing yourself is really important, because even knowing how you are going to respond to information in a certain way can be a really important one as well.
Yes, like in terms of, I know that when I read information it'll often take me a bit to process or I'll need to concentrate on processing that, that story is not necessarily what's going to happen to me. And that was another thing which I felt just because that person didn't go well there, or that person went really well there, doesn't mean that's going to be my story.
And if you're a person who takes it on a lot and I might read something and get very excited about it and think, hang on, I need to have that person who can self-check or who can check for me. If I can't self-check, have someone who can check for me.
When I normally read social media posts I normally am that person who, all of a sudden feels really down because everyone seems so happy. You know that that's one type of person, and the other person is the type of person who says, oh, well that's them, that's not me and, I'm good with that and I think that really, if you can see how you normally engage with information, all of those things will be transferred into how you engage with information about your medical condition as well, and that sort of understanding will give you a really good platform to say, this is what I need.
Well, I think it's so important in terms of how you're going to live with MS, and especially nowadays, there's so much available and it's so big. So how you're going to live with MS, how to get and use information, and how it's going to work for you and your family and those around you, is just such an important part of the way that we manage the disease.
I think underestimated as a nurse, red flags were really, when I thought, Hey, I think you're getting too much information. There's a lot of information that you're taking on and it's all, I can see it all around you. You're trying to kind of, it's just so big and so much information and it's almost the skills that you need to do it, and having your own thing, having your own rules to self, if you like. The things that we've talked about, have yourself have your right headspace. Ask yourself those questions. Have them written down before you seek information. Say, Where is this coming from? Who is the source? What is this information telling me? And, is it confirmation bias or is it not confirmation bias? And how can I check back? It will give you that balance. It's not as deeply richly informed by lived experience. Storytelling is so powerful and so inspiring in a really important part of self-efficacy. Like in terms of saying, if Simon can do it, so can I, and that's one way of doing it.
Simon: It's probably worth remembering also that people tend to tell stories because things have gone well, or equally, because they've gone badly. People don't tend to tell stories of things going, yeah, okay. So you will tend to get to the extremes of experience, which is great. It can be inspiring, or it can be a warning about things that can go wrong, but it's not necessarily typical, and, as you say, it's not necessarily going be your experience. But it can still be inspiring or helpful from somebody else's experience. But, you don’t know how many people are in the, Yeah, it went okay, but it's nothing spectacular, bit in the middle.
Jodi: Well I will thank you for your time, Simon, it's been amazing, and thank you for all the work that, as I said, I was stoked just to have a chat to you and I hope we can have a chat another day. We've certainly shared a lot of resources without knowing it probably over the years, maybe not so much UK to Australia, but certainly Australia to the UK.
So, thank you for your work. Thank you for your time and thank you for your dedication to giving people information with MS. It's a vital part of living well with MS.
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