In honor of World MS Day, we were delighted to host MS patient expert, Robert Joyce as our latest LinkedIn Live guest.
In 2017, Robert started a blog called A 30 Minute Life because his life had been dramatically changed as a result of a car accident. The crash left him in continual pain, and it also caused his multiple sclerosis to flare up. He had to medically retire and was finding this difficult. However, in 2019, he was employed as a research assistant on a trial about a new therapy to help people living with MS with their cognitive symptoms. This was transformative, giving Robert a new purpose in life. Now, he shares his experience as a patient advocate to encourage researchers to include patients throughout the research process.
In keeping with the theme of World MS Day ‘Connections’ our chat focused on the myriad types of connections we make in the healthcare world, whether it is connections with each other, no matter our disease area, or connections with researchers, medical students, and healthcare professionals.
We share just a few highlights from our conversation with Robert; if you'd like to hear more, be sure to check out the recording on our YouTube channel.
In the first part of our conversation, Robert discussed the differences between acute and chronic illness and the different approaches required to treat each, before moving onto commonalities between illnesses.
“You've got an acute illness, which is for a short period of time. And then you have chronic illnesses like multiple sclerosis or, say, Parkinson's, or even something like diabetes or glaucoma that you have for life and you don't get rid of. And I think those illness groups have to be treated a little bit differently. I have found that in talking to other people with chronic illnesses like mine, we have had to learn a completely different way of living because of the constraints of our illness.
Now there are a lot of common symptoms that we experience. So fatigue or pain or overmedication, headaches, migraines. These are all symptoms that can occur in these chronic illnesses. And I think we can learn from each other - how we manage our illness and how we manage our emotional response to something that is inherently negative in our lives. And it is how to turn that around. So it isn't always on the negative side that we're looking. If we can liaise with other illnesses and understand how they have managed to cope, maybe we're doing it wrong in my illness and maybe there's a better way of doing it.
And that's where I love the connections between different illnesses so that we can learn from each other, because ultimately, we all want to have a better quality of life. And how to do that maybe isn't in our own gift or in our own knowledge. And by the sharing of knowledge and experience, which we do with blogs and podcasts and social media, I think that helps. Other people learn from the mistakes that we've made. And I know that's benefitted me, and I hope my experience has benefited others.”
The conversation then moved to the broader health ecosystem, where Robert talked about being a connector between professionals and patients, breaking down the "them and us" barriers in healthcare.
“Ultimately, I think that the healthcare system should be there to improve our quality of life. And we, as patients, are a key element to that whole medical framework. However, up to now, the system has been very paternalistic, and it's very much an us and them. We don't necessarily seem to have the capacity, or the knowledge, or the skill to manage our illnesses. And so we are given instruction by the healthcare professionals, and, or researchers in that whole other medical sphere. But now that that has changed, the dynamic has really altered. And this really started, from what I understand, with the AIDS campaigns and the first treatments for HIV, AIDS.
This started getting the patient involved in research and being more proactive in their health care. However, in the research sphere, that really hasn't totally kicked off yet, and there has been a strong move by different organisations to include the patient in research and this is an attempt to maybe narrow the gap between researcher and patient.”
Robert went on to speak about his involvement as a researcher on an MS trial in Galway, Ireland.
“When I started working on the trial in Galway, I was employed as an assistant researcher with a specific goal in mind, and that was to be the voice of the patient within the research. So my goal was to make sure that, as far as I could, everything within that trial was suitable for people like me with multiple sclerosis. And it brought to me that I am part of the multiple sclerosis community. It's my tribe. It's the group that I come from. And we have a common language. We understand each other's symptoms in a way that somebody who's never had the illness will ever experience. And I am bringing that story a bit like Marco Polo when he was bringing the silks from China.
We're trying to bring these treasures that both sides have experience of—the patient bringing it across to the researcher, but the researcher has the skill and talent to use that information to actually create something that is of value to us to improve our quality of lives. So I now see myself as part of that connection, that Silk Road of knowledge going between the two groups. And the closer we come together, the quicker that connection, the more responsive I think our healthcare system and our research can be. So it is a tremendous opportunity. But I always have to remember that I am still from the MS community and the researcher is from their community, and we have to try and make sure that the languages that we both speak are similar. We need a Rosetta Stone in a way, and that is the great opportunity of having patients like me involved in research in a tangible way that actually makes a difference.”
Having inspired us with the imagery of patients as explorers, Robert then reflected on the ways we speak about illness within the patient community.
“Part of a word is our understanding, my individual understanding of that word, and how it resonates with me. So I could have something like the word ‘water’ be extremely charged for me because I had a very negative experience of drowning. And so, for me, that is an extremely charged word. For those of you who didn't have that experience, it is not so charged. So. I would not like to have the words that are being used to be an obstacle to better communication between two groups. So I feel that it is my responsibility to hear what that person says. Ask them what their understanding of that word is for them? Then tell them what it means for me to see if they can understand that there is a difference in perception of a particular word.”
When it comes to research, Robert cautioned that language shouldn't be an obstacle to meaningful research for patients. During the MS trial, he spoke of other "unnecessary obstacles" and gave an example.
“As part of the trial, we needed to give a booklet to participants to explain the tasks that they had to do and the PhD postdoc on the trial and the principal investigator, they presented the booklet and It was a fantastic book, but it had what they call a blind binding. And that means when the book is opened up, it doesn't lie flat, it lies a little bit curved. And for somebody with multiple sclerosis, that means I have to hold it flat with one hand while trying to read it and understand it. So it's creating more tasks for me to do. And somebody with multiple sclerosis can have a tremor in their hand or weakness in their hand. And that booklet could be an obstacle to that person fully participating in the study because the materials aren't correct.
But the researchers did not know what it felt like to hold a book like that in their hands. But I did. And so this brought a revelation to them that they never even considered it could be a problem. And then as a result of that, we had a good discussion about it. We then transfer that to our patient advisory panel, which was several people who have different stages of multiple sclerosis, different experiences of it, and they added extra levels of depth in how this book should be done.
So this is the importance of sharing the experience, learning what each other needs, and this is going back to the language that we use. If we didn't go through that process, we wouldn't have had that better booklet. If I don't teach somebody that using a particular phraseology or word is upsetting to me, they will never know. And I cannot knock them down for using that word because I don't know where they have come from to get to the point of using the word in that particular way.”
We asked Robert to share his thoughts on how all stakeholders can work together collaboratively to create better outcomes for patients.
“This is where I think there is a gap in the market. I live in Clifton, which is in the west of Ireland and every week we have a mart [market]. Farmers from all over the area come with their cattle or sheep or ponies, whatever the market is for that day, and they're selling their wares on one side. But outside of that, they're talking, right? So you have the vets there. You have the people who are buying the animals. You have the people who are selling them. You have people from the other side of the country and they're all talking about what they have learnt and experienced. And we don't have that market in the patient sphere yet. We're trying to get there but there is still not that marketplace where researchers and patients can actually talk together and find out what both sides need.
I think there is a huge opportunity for researchers to actually meet patients on our turf for a while. They could go to the WhatsApp groups or the Twitter feeds or the chats that are out there and come in amongst us, learn our language. Ask us what we need. As patients, we have a very vested interest in making research a success, but also we have a vested interest in making it relevant. And this is where the correct formulation of the research question at the very, very beginning of the process is critical. And that's where we need to have this marketplace of researchers and patients working together to come up with relevant questions that we need to have answers.”
Quoting the last lines from a poem by William Butler Yeats, which for Robert “symbolizes the rawness, the roughness, the emotion that people have associated with living a life,” he asked healthcare professionals to “go down to that raw state, where you can actually get real jewels, real gold.”
“We have to remember that illness is highly emotive. It is goes to the very core of who we are. And it has an impact on everything that we do from the relationships that we have, from the work that we do, from the way we have to live our life day to day. It is pervasive and we can't escape from it and it's extremely raw and it can be very tough for us. And to sanitize it is in many ways doing a disservice to the illness and a disservice to the patient, because if you don't understand that, you can never really treat the patient.”
Robert recounted a recent instance where he experienced a lack of empathy at the hospital where he receives his treatment.
“I had a situation there where I needed to get somewhere, I needed the use of a wheelchair, and somebody was walking in front of me with the wheelchair in their hands, not letting me sit in it, bringing me to a place where another wheelchair would collect me. And this is a total disassociation between that individual and the impact of an illness on another person and even an understanding of why is the person asked for a wheelchair? So we need to get rid of that overly structured way of operating something and bring back the humanity into it. And that is a huge challenge. And I know for healthcare professionals, it is even more of a challenge because they can't get so emotionally wrapped up in every patient that comes because they just won't be effective anymore. But there still needs to be that degree of empathy. And how can we teach that to our upcoming health care professionals so that they're ready to deal with this and how to understand the implications of an illness on an individual? And I think that all goes back to the education, which is a whole other topic that I'm hugely interested in.
I'm working with universities on how to incorporate the patient better within their teaching and what are the needs of the user of the service that is being provided by that professional out in the world, and to incorporate that into the education. That to me is almost like a golden thread that should weave through every single course that they're doing, that the patient is inherently part of it. I would love to see a day when a student is learning about neurology from day one, when they first start their medical education, to have a neurology patient there in the classroom so that they can actually see the impact of that illness on a live person.
They will meet many patients along the way in their study and they will see them in the classroom. But even more importantly, they'll get to chat to them in the corridor as they're walking out of the classroom and meet us as real people and get to ask those questions and make those mistakes and say those wrong words. And we as patients can help educate them to be better. But then what will be the magic of it? When they actually get out into the real world and start meeting patients, they can associate a particular illness with a person they met along in their education. And it's a bit like Ms. Marple when she was trying to solve her crimes. She always associated an individual with somebody that she knew in her village. We will be that village, that resource that the doctors can use as they are treating patients in the future. And they will treat us then with more respect and more empathy, because they'll actually be able to put more colour behind the symptoms that they see in front of them.”
As an active social media user, Robert shared how he uses different platforms to communicate his advocacy message.
“There are different sections to my public persona. One is Twitter [@30MinuteLife] where I talk about more or less everyday, the things that happen to me. So I was tweeting recently about my experience in the hospital and how I actually walked out of the hospital. And I find it very good to share that both for myself, because it's kind of an offload of annoyance, but also it shows to other patients that there are other people out there who are experiencing similar issues, but they also can be a catalyst for change where we can use this to create a groundswell of support for particular changes. So I think Twitter is fantastic at that.
I use LinkedIn because of its connections with the healthcare industry and not only healthcare, but things like our public representatives, the politicians. I can connect with them through LinkedIn, that I think has a power in a different sphere. And then my podcast, which spawned over the pandemic, where I have a huge collection of posts that I've written in my blog and what I've been doing for my podcast.When I read one of the posts that I wrote a couple of years ago and reflect on it now from this point. I ask myself, am I still doing what I said I would do three years ago? Has the system changed? Has there been any advancements in what's going on?
There are things that I've tried, like different diets that I tried and they worked for a bit, but then they didn't and I couldn't continue with them. But that's real life. And I think we have to be honest with ourselves that we set up goals for ourselves that we fail at, but we also set goals that we succeed in. And I think that is what I hope people will get. Maybe from what I'm saying in my podcast and from my blogs, is that we're all imperfect and we all do things a little bit messy. And but there are times if we set a really good goal and divide it up into pieces that we can actually achieve, it is amazing what can happen. And I just look at myself and see when I started that blog in 2017, I didn't know anything about research and I knew very little about advocacy. But now my voice is being used in so many ways that I never would have imagined.
I never thought that I would be in a position where I could use my voice to create change and maybe move the needle just a little bit to make the lives of other people with an illness, not just my disease area, but all in us make our lives a little bit better. Wouldn't that be a huge achievement and something that I could say now? I did something. I actually made a difference.
We finished our conversation with Robert sharing advice to other patient advocates
“I think that the key thing is to just be yourself, you know, just be who you are. Don't try to be more or less or something different. Because if you embark on this journey of advocacy, if you are not being true to yourself, it's going to be unsustainable. You won't be able to keep it up. You're trying to be somebody that you're not. And that's where I try to maintain that throughout what I do. if I'm bad, I'm bad. And that happens to me when my fatigue is worse or my pain is worse and I just can't do anything. And I just have to admit that that's the situation. And I think that's really powerful. I think that's what people need. And I know it's what I need. I need people to be truthful and to be honest about it. And I have had those dark days. I have been in my bed in tears, wondering what is the point of it all. Because I have lost so much and being in that dark place and then figuring a way how to clamber out of it and. How do you do that? And is it in one big leap like Superman or is it just small, little incremental steps and which is better for you? And I think it's that latter where you make small changes that are continuous and improving on each other.
Using social media and podcasts and all these communication channels, which were not there 30 years ago when I was diagnosed, we can really make change and people can understand that they're not alone in this, that they other people have experienced this and we've all found our own ways of getting out of it. And maybe my methods will resonate with some people and they'll say, that's what I need to do.
I wrote an article recently, ‘Why I became a patient researcher,’ and in it I wrote I could not have foreseen how sharing the impact of a negative in my life with strangers could be a positive experience for me. I actually had people afterwards contacting me and saying, Robert, that's what I need to do. This would give me a purpose back in my life. What steps do I need to take? And I just thought, isn't this amazing that I can, by writing some words on a page that the light bulb can go off in somebody's head and say, now, that's what I can do. I can use my illness, this negative that's in my life, for something positive to make change.”
And it has moved for me, my whole perception of my illness, I still have MS, I still have the problems, and that's not going to go. But when I wake up in the morning, that's not the first thing that I think about. I think about what kind of good can I do today? And isn't that just a powerful thing to wake up to? It is so much better with that realization when you open your eyes that I'm going to do something for good rather than thinking about I can't walk anymore or my limbs are sore or I'm in pain, or my fatigue is crushing that I can only do six or 7 hours of stuff a week. That's a negative, whereas my life now is kind of revolving around that positive frame of the positive things that I can do.”
Our thanks to Robert for this wonderfully engaging chat, which you can also view via our recorded session.