Maureen

Maureen

Maureen is a retired teacher who has been actively involved as a patient advisor on policy advisory committees for the last 18 years, and in recent years she has worked closely with researchers as a patient partner on various projects.Maureen was diagnosed with a rare childhood disease at a young age and was enrolled early on as a study participant in a long-term project specific to her disease. She participated in several studies over the years, and she credits this experience to saving and improving her life. Maureen felt highly motivated to become a patient partner in medical research projects because of her belief in what medical research can do for improving patients’ lives. In learning from her experiences, she believes that there are tales that must be dispelled about patient-oriented research. First, patients do not need to have a scientific background to contribute meaningfully. Second, patients do not necessarily need to be diagnosed with the same disease being studied in the project, as their own lived experience may relate well to the experiences of others. Last, patients do not need to be involved throughout the whole research process, and researchers should make it clear that there are many entry (and exit) points throughout the research life cycle for patients to get involved as a partner. Maureen is optimistic that the number and variation amongst of research partners will broaden if these myths are dispelled.

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So for patients and caregivers, I would say that they should try it. They should just get involved and maybe start small and then see if it's something that they enjoy, because you don't have to start with participating from beginning to end in a project - you can start small. And work on that and see if it's something that you really enjoy - if you don't enjoy doing it, you shouldn't be doing it. Like you should be getting something out of it, whether it's just that you're helping advance research or whether it's in your child's condition, or your own condition that you're making life better for people who - it doesn't matter what your motivation is but you need to maybe get involved on a small scale.

And if someone approaches you and you don't want to get involved on a full scale, you could always say you know I'm interested but I'd like to do something small to start off with. And maybe they can find a place for you to do that. And get out there and take some of the training that - because you'll get to network with the people who do it and will share their experiences, and most of the training now is down by webinar, so it's not - and a lot of them they're taped so you can watch them on your own time. It's not like it used to be years ago - with the technology today it's easier to go ahead and get some training. So I think that's interesting.

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We want to make sure that, especially in rare diseases where we're working from a small pool, we want to make sure that we don't turn the trend around and we still - but I think when you have patient partners, well the studies have shown that your recruitment is often better - you often recruit more people. So there's a very big difference. So when you're participating as a subject or as a patient participant, which is better term, you're bound to whatever has been decided and you can't make changes. If you don't like the way that it's happened, they can't change a protocol once they've submitted it. So if you say well coming in every day for blood-work is draining on me - you have two choices, you can quit the program, quit the research, or you can just suck it up and continue. 

So and your contribution is very important because you're contributing to research but in a different way, and the system only works when we have both of those groups. Hopefully, if you're engaging patients in the research, and you're looking at what you're asking of the patients, they are more able to say well you know that's not reasonable. If this person has mobility issues and you're asking them to travel an hour a week to get to that appointment, you know you may be better to send a nurse to their home or something. So hopefully that they work hand-in-hand, that we make the experience of the participants better and more realistic by being engaged at that stage. So it really is - I think it's a win-win situation that way.

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Right, so some people think that you have to have that condition, or you have to be affiliated with that condition to contribute meaningfully, so no, for me it's not. So in my area, I don't need any research right now, I'm doing well, I'm good. But it doesn't mean that my experiences don't translate to some other disease group, or just in research on how to engage people. So I think meaningful to me means that I'm - I'm very big on mentorship, so are we going to engage some people who may later become co-investigators and who are going to be interested in it, and if it's satisfying for them, like that's - because obviously I'm going to take care of making sure it's satisfying for me, but is it satisfying for the other people and are we doing something where they feel that they haven't given up their time for nothing?

Especially in medical research, where if you're engaging families or people who are ill, like that's a big thing for them. You know they have other concerns to worry about too, so I think that's what meaningful means to me and working with a team that's willing to say well that was an error, that didn’t work, let's see if we can fix it, or let's see if - we won't do that again next time. It's not supposed to be perfect, right?

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So you have to be really careful about what you're - you know the options that you make available and maybe that person wouldn't jump into that project just because of that one sentence - that could have turned them off. And so we adjusted it to make sure that well if they wanted to, and not that it was like it was a requirement of participating because the research world is - it's like a bubble and people live in this bubble and if you're not involved in that world, and even if you've been a research participant in a study, you don't know what's going on behind the scenes.

So there's a lot of misconceptions about what it means to be a patient partner and we have to really explain that really clearly and show all the points of entry where you could jump in. And that's where the diversity will come in, because you can't be possibly a co-investigator from beginning to end if you've got a full-time job and you're on a limited income, so you don't - you know maybe they're not even providing money for babysitting, who knows. And maybe the meetings are during the daytime. So if you make it so complicated, you are only going to get a small group of people. 

So you have to really focus on the diversity that can come into the project and then how - what you can do in your research to make it doable. Because if you keep going the way you're going, you're only - you're just going to do the same thing, you're going to get a small group of people who are either retired or who work part-time and who have a certain income where they can forego other maybe paid employment so they can do that, and that's not good for the future of patient partnerships.

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I think that's where we're going. My hope - I don't think it's going to go backwards, like I think it's here to stay. I guess my hope is that I really would like to see more diversity. I'd like to see more myths dispelled about what it takes to get involved so that people who we really need to hear from are really heard - I think that's really important. And to do that, like I said, we have to really have an understanding of how people can contribute and how their life experiences are valuable to all the members of the research team, I think that's really important. I think that's where we're going, but it certainly - it's a very exciting time. Like it’s very exciting to be involved in something that's changing all the time and evolving but just a lot of growing pains.

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My hope - I don't think it's going to go backwards, like I think it's here to stay. I guess my hope is that I really would like to see more diversity. I'd like to see more myths dispelled about what it takes to get involved so that people who we really need to hear from are really heard - I think that's really important. And to do that, like I said, we have to really have an understanding of how people can contribute and how their life experiences are valuable to all the members of the research team, I think that's really important. I think that's where we're going, but it certainly - it's a very exciting time. Like it’s very exciting to be involved in something that's changing all the time and evolving but just a lot of growing pains.

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So my interest in patient engagement research comes from my own story. I was diagnosed with a rare disease when I was eight years old after four years of searching for answers, and I became involved with the first longitudinal study in my disease, so I was at the [name] for 10 years for very strict research protocol and then after that became - also was engaged in research for a number of years after that on different projects.

So for me medical research is very important, it's what saved my life, it's what gives me - the results of it give me a quality of life that I really enjoy, and I have a lot of faith in medical research and in rare diseases, it's something that's very, very difficult so there's a lot less research. So for 20 years there was no research in my condition. Once I reached adulthood the research stopped, and my health deteriorated tremendously, I was using a walker, I was pretty well house-bound. And just had a horrible life, and there was just no research being done, so a very ultra-rare disease and calling all over and there was no Internet then, trying to find researchers who would take it upon themselves to study what was happening to the kids that they had so well studied in childhood. 

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Right, so having - like meeting the researcher, like the lead researcher and really feeling that I could work with that person was really important to me. So a face-to-face meeting where the person really explained to me what it is that they want to do and connecting with me in some way, is really important. I don’t want to waste my time when there's so many things that I could be doing that I don't want to waste my time. So I think that that connection is really important. So I weighed that heavily, like do I really think that this is a tick box or does this person really want to engage patients and really want to do it as a learning like for both of us?

So I think that that relationship is really important. When we - when I got involved in the core outcome set project, we had - we developed - so the researcher and I developed a training program to get our families on board; so our families have no experience at participating in research, they have sick children, they volunteer to do this, now we have to explain what core outcome sets are and how this project is going to unroll. And I said to our lead researcher, you know I really think we should go to Vancouver and meet these people like face-to-face and do this training. Like I know it's a lot of money in the budget for the research, but I have a feeling that it's going to be really important. 

And she agreed and off we went, which cost money to go from Ottawa to Vancouver. And it's paid back like many, many, many times, and at the end of the - it was basically a meeting where we did a PowerPoint presentation at, one of the participants said you know you guys sent a lot of emails explaining stuff, today I got it. (Laughs) I really didn't understand it - it was all gobbledygook to me before. And I mean this wasn't written in gobbledygook - this had been vetted and vetted and vetted, but it was still just not there.

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Okay, so there's one trend that's happening in patient engagement research that I find disturbing and that’s the - and I've heard espoused at various conferences that I go to - and that's the one where people, some people are of the opinion that if you're not involved in the project from beginning to end, and then it's not meaningful patient engagement. And I think it's important in a project to have a couple of patients who are engaged from beginning to end, but I think that within the project, you also bring in many other patient voices and at different entry points and we have to make those entry points really clear, like these are places where people can come into the project and maybe it's a two-hour contribution, and you tailor it to your research. 

So we need to do that and that, in my mind that's the only way we're going to get diversity. Like I think that's the way to get the diversity. So there is that trend where you've got to be like a professional patient engagement person and I find I don't like that - that's not for me either. I really want to have patients in different areas. So the two projects that I do in Ottawa, we have two different approaches to patient engagement. So in the one project we have this family advisory forum that we set up with families of people and they were at the project from the beginning until the end, and that's worked really well. The other project we've got like advisors that we send things out to and can you take a look at this diary and you know this is too cumbersome, and what do you think of this and the questions […]. Completely different ways to go but each one tailored to that project and there's no - it's not you know one way fits all, like you've got to have that flexibility. But when I hear that if you're not beginning to end then it's not patient engagement, I find - I don't like that attitude. I think it's - because not everyone wants to do that or has energy to do that, or has the interest.

So I've had people say oh you know you should take that piece or course in Alberta and become like a patient researcher, so I have no interest in that. Like I hate data - I don't want to do literature reviews. We had 335 articles that were reviewed for the project that I was on. Yes, thank you for telling me, great, go ahead, do it - I have no interest in that. And that doesn't mean that I'm not a good patient partner, because I bring something else to the table. So that professionalization of patient partner, I think is the wrong way to go and I think that - and there is a trend for some people towards that and I think that we're going to exclude a lot of people that way. So that's something that we're going to have to deal with in the years to come now because we are getting professional patients and they have various attitudes on other people who are participating. And I think we all have a contribution to make and we have to figure out how it can be done and to include as many people as possible.

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So it's really difficult. But I think the most important skill is that you're able to communicate, you have to really be able to communicate with the people who are leading the project and tell them when you're unhappy or when you feel that it's not going in a good way - I think it's really important. I think that's probably - but I don't think you need to have - I don't have a science background at all, so I have a Master's degree, so I do have one stats course which I almost failed, but we won't go there, but I don't have a science background. I've had to learn a lot over the past 18 years and I probably have a lot more knowledge now than I had, but I don't think that that's absolutely necessary.

Yet, when you talk to people about becoming engaged as patient partners, they say well I don't have a science background - that's one of the things I've heard. So there's myths that need to be dispelled because once again you're going to be - who you're going to attract and you don't want just people with science backgrounds speaking - giving their perspectives. So I think dispelling the myth is really important. And I think one of the ways that - like if I ever do give presentations on patient engagement and research, I'd put up a couple of PowerPoint slides with all those different ways that people can participate, and you know oh, oh, like and it can be something small, like just reading a consent form. And letting the researcher know that what if you gave me this, I wouldn't understand it. Well that's really important. So we need to kind of like break it down into smaller pieces and say like these are some of the examples of what you can do - so you don't think you have to engage for three years.

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It's important for researchers who've had really positive experiences to speak to their fellow-researchers. So just as patients will have - and caregivers will have an impact on getting other people involved who are in the same situation as them, as I said people will - teachers listen to teachers, patients listen to patients - I think that researchers listen to researchers and so, on your end, you also have to advocate for this and get out there and share those experiences. 

And share the lessons you've learned, and what didn't work and what worked - I think there's a big public relations (PR) job to be done there and you - patients have to do it on their end, but researchers have to do it on their end too. Because researcher to researcher, it's going to be very impactful, because they know that you understand their reality, that you know what their life is like and this is what you've done and they can do it too. Whereas the same thing for patients - I understand that someone's going to give up time to research and they've got a sick kid, that they've only got a certain amount of hours and they'd have to decide what's important to them and what's not, and I don't want to waste their time. That would be a horrible thing to think that they had given up those hours and that their time is wasted.

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So getting the patient and the caregivers involved in the training, I think is of utmost importance. I think you need to know - you need to go out and find out what it is that people think or people would like to know - like what would be the most helpful thing that we could tell you in a course? Find out what it is and really put that message out there - I think it's really important. And I think, as I said before, diversifying the course is really difficult, so even if you did know levels, beginner, intermediate and advanced, that would be great, and maybe someone only takes the beginner level because that's all that they really need, they want to participate and in one aspect of the research and they want to go to focus groups maybe and just talking about some of the outcomes that are important for that condition and what they think people should be looking at. 

Well you know what, you don’t need to understand research from A to Z to go and say what you think is important for your condition, that you would like people to study. So I think that's really important to make the training attractive to as many people as possible by not making it overly complicated.

Transcript

It's important for researchers who've had really positive experiences to speak to their fellow-researchers. So just as patients will have - and caregivers will have an impact on getting other people involved who are in the same situation as them, as I said people will - teachers listen to teachers, patients listen to patients - I think that researchers listen to researchers and so, on your end, you also have to advocate for this and get out there and share those experiences. 

And share the lessons you've learned, and what didn't work and what worked - I think there's a big public relations (PR) job to be done there and you - patients have to do it on their end, but researchers have to do it on their end too. Because researcher to researcher, it's going to be very impactful, because they know that you understand their reality, that you know what their life is like and this is what you've done and they can do it too. Whereas the same thing for patients - I understand that someone's going to give up time to research and they've got a sick kid, that they've only got a certain amount of hours and they'd have to decide what's important to them and what's not, and I don't want to waste their time. That would be a horrible thing to think that they had given up those hours and that their time is wasted.