Involving patients in developing guidelines: #CochraneForAll interview with Lyubov Lytvyn

Casey Quinlan @MightyCasey from Beyond The Room Team at the #CochraneForAll Colloquium, 2018, interviews Lyubov Lytvyn @lyubovlytvyn, a PhD student at McMaster University, about involving patients in research to guide the development of evidence-based recommendations.

CQ:

And here’s the conversation with Lyubov Lytvyn , PhD student at McMaster University and an extreme fan of evidence-based medicine.

All right, so tell me about your work. How do you get patients involved in research?

LL:

So, the particular work that I do is related to guidelines and how we can have patients and caregivers on the guideline panels, and we involve them from the protocol development stage all the way up to the dissemination stage of the finalised manuscript. And we, kind of, view this in a very democratic way.  So, we think that patients and caregivers, they have an expertise that is also important in a multidisciplinary panel, and the kind of input they provide is on many levels, so we have kind of a formalised process of the things that we call upon them to do; so, specific tasks that they could help with and these tasks are not just for them, they are for everyone on the guideline panel, and then there are additional tasks that are kind of geared more towards them, such as the discussion about patient values and preferences, and the degree to which things are important or not important for decision making, and also things like practical issues related to management and care options.

CQ:

Yeah, full disclosure: I’ve been on two of the Rapid Recs [BMJ Rapid Recommendations] projects that you’ve been part of. One for knee arthroscopy which is, you know, published and available…

LL:

Our most popular Rapid Recs by far, by the way…

CQ:

Sweet. And I’m currently part of the Colorectal Cancer Screening Rapid Recs group too. But, you know, I think that there has been some useful work there with some of the ‘how it will be presented to the public’: whether it’s a decision aid or here’s this new thing, you can use. You know, some of the conversations I’ve had with some of your team members, around that, you know. So, if anyone ever asks you out there in internet land, if you want to be part of a BMJ Rapid Recs group, the answer is yes. Moving on!

So, what’s had the most impact on you at the Colloquium so far? What has hit you the most, given you the most to think about? What’s had the most impact?

LL:

So, there are a lot of different people here, doing a lot of really incredible work and I’ve just been amazed by the level of expertise that I’ve seen. And I think that there are a lot of similarities to how we do things but also a lot of differences, and I feel that there is a lot of, kind of, room for us to individualise approaches and I think a lot of us have, kind of, had these very similar principles of respectful involvement, and kind of partnering and the idea of fostering relationships but also there’s another kind of voice from others that’s saying that we really just need to build capacity for patient and caregiver partners to, kind of, initiate their own research work and to maybe seek out on their own the people they want to partner with, and, kind of, think more about just, kind of, having everyone involved in research and guideline development.

CQ:

Yeah. So, “nothing about me, without me” in all directions, a 360if you will, of, you know, everyone involved as opposed to having things served up to you, that may or may not make any sense, or may not be actually useful to the end user.

LL:

I feel like there’s a lot of different perspectives that I am hearing and it’s been really interesting. So, some people are, kind of, very much, patients have the best information, they have the best knowledge, you know, like we should include them at all cost, and then there’s, kind of, more measured approaches that are saying may be they don’t always have the, kind of, best ideas and we can’t really expect this to be something that would come out of that project and, kind of, the idea, kind of, working more on the way that we co-produce because it’s very…a very buzzy word and there’s not a lot of standards. But I mean, in general, there’s not a lot of standards for patient public engagement, there’s a lot of really good frameworks.

CQ:

What would you like to see more of at research meetings like this? You know, do you have any ideas of how you could start to plant seeds for some of…for identifying some of the places where guidelines could emerge?

LL:

Guidelines for standards?

CQ:

Guidelines and standards for patient inclusion, so there is a little less wandering around, lip service, or, you know, putting all of the burden, you know, on one group, you know.

LL:

Yeah, well I mean there’s the active group that is Cochrane-led and they’re doing work on how to do consumer engagement for systematic reviews and they’re just about to publish their work, just in about a month. And it’s really incredible and very comprehensive. And then I’m part of a group called MuSE, it’s a GRADE working group on multi stakeholder engagement and we’re working on the same kind of question but for guidelines, so we’re working with the Oxford group, collaboratively, we all kind of know each other, a lot of us are working on the same kind of projects and we’re at least trying to develop some standards. But I still feel that you don’t really need one set of standards. I think the thing that we’re kind of lacking is groups that may not have all of this knowledge to just, kind of, try to start something. So, try to find a framework that’s, you know, is in your local community because there are so many out there, and I feel that people who have developed these frameworks, they’re fairly good at disseminating their work, so it shouldn’t be too hard for you to find something. There are several different libraries of all this patient engagement research and I think it’s important to kind of encourage people to give it a shot. I mean, kind of decide what’s important to you, as…so let’s say, if you’re a researcher or a policy developer or a patient yourself, what is important to you and then think about how you’re going to get there and what kind of, you know, tools, you need to get there, and sort of have an ongoing process of improving whatever you’re doing, because there’s not a whole lot of, kind of…I don’t want to use the word iterative, because you earlier… [in earlier discussions, the word “iterative” had been named as jargon requiring explanation and to prefer a plain language equivalent]

CQ:

Ah, yes…ongoing, ongoing.

LL:

Yeah, ongoing, yeah but it’s just the idea of, like, you have to start somewhere. That’s what I feel like there needs to be a little more of because I’m around so many like-minded people and they’re doing such cool stuff but in the “real world”, there are so many people that won’t even do, you know, a little bit of patient engagement or consumer engagement.

CQ:

Well, for all of this, I always just go back to one of my gurus, the late Arthur Ashe, “Start where you are, use what you have, do what you can”. Because that’s what every day when I get up, that’s what I do. You know, I think that’s what…there’s perhaps a place for that here, too. But you gotta start somewhere.

Now, I’m going to flip this a little bit and ask what’s your sense of how the research community might shift its thinking to the point of approaching the community that will be affected by this research first and saying, “what matters to you?”, rather than coming up with the research question and then going out and saying, “hey Community, we’re going to do this”. What do you think the odds are on that? Do you think that could ever happen?

LL:

I think it should happen and that’s one of the conversations we’re having. I think a lot of the issues are that it’s really hard to do this kind of work without any kind of funding. And because you get funding based on the project you propose, that means you’re, kind of, already too late. So, one way of doing this is to, when you’re developing proposals of what kind of projects you wanna do, then to involve people in the development process. I know there is a grant from the kind of patient-oriented research group in Canada, where they actually had seed grants. So, they’re responding that they would give, for you to be able to engage, like to pay people, to engage them to develop your protocol for submission, instead of saying, please volunteer your time, we don’t know if it’s going to get funded, and often it isn’t, and, you know, just kind of hoping something’s going to work out. The other thing is to really just encourage funders to do more work on priority setting partnerships and different kind of priority exercises, and,kind of, communicating to the funders that we need to stop, kind of, focusing so strongly on giving money only to people who know, kind of, like the scientific aspects of the research and people who would know, kind of, the more practical issues and have really valuable knowledge and information. I’ve, you know, seen so many presentations of, kind of, patient- and carer-led research or things where, you know, people, researchers, or clinicians, or whoever it is, kind of, approaches the situation and the patients and caregivers totally switch the way that they were thinking about it. And, you know, if that happens like fairly often…I don’t know…it’s hard to say. There are people who are sceptical and there’s work that has been done.

CQ:

It’s an iterative process! [Laughter].

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Sarah Chapman

About Sarah Chapman

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Sarah's work as a Knowledge Broker at Cochrane UK focuses on disseminating Cochrane evidence through social media, including Evidently Cochrane blogs, blogshots and the ‘Evidence for Everyday’ series for nurses, midwives, allied health professionals and patients. A former registered general nurse, Sarah has a particular interest making evidence accessible and useful to practitioners and to others making decisions about health. Before joining Cochrane, Sarah also worked on systematic reviews for the University of Oxford and the Royal College of Nursing Institute, and obtained degrees in History from the University of Oxford and in the history of women’s health and illness in early modern England (MPhil., University of Reading).

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