Annette is the lead for education at a faculty of medicine. She is also the research lead for a large patient-oriented research network on children with chronic diseases. The proposal for this grant gained strength when patient partners and other community organizations got involved early on in the project planning. Annette’s team is looking at how researchers can be supported when doing patient-oriented research and they are building a community of patient-oriented researchers. They hope that this will help other researchers to get interested in patient-oriented research. The network has developed a training program, peer mentorship, online webinars, a Citizen Engagement Council, guidelines for honorariums, and many other resources (e.g., newsletters featuring patient engagement initiatives). This group is always learning and changing as they find new ways to work with patients in research. They have noticed that when patients are engaged in research, it takes more time at the beginning to get projects up and running, but they expect that there will be greater and more meaningful outcomes for researchers and for patients and families. This network has a website with many interesting resources: https://www.child-bright.ca/.
Well I think sometimes patients misunderstand their role in terms of research - they think it's going to be service that they'll receive. Like so the communication, like you have to be sure that you explain well what the role is and what the purpose is, and the fact that they're going to do a lot of waiting, you know that things - that research is a slow process. So I think often like for people - for patients who are new to the research world, you have to be sure that they really understand what their roles are and what it is and what it isn't, so that they're not disappointed.
But there are other parents that contact us and they say they want to be involved. So what we've developed is a matching tool, so they fill out the tool basically telling us a little bit about themselves, the type of - their child's age and type of disability, so we have a sense of their profile, where they are in the stage of their child's development, what skillsets they have that they could offer that they think could be helpful to the network, like some have done editing work, or have writing skills, or things like that. And graphic design, you know.
Sometimes there are specific needs that come up, whether let's say we were looking at a new - a venue for a meeting, so we wanted to have a youth look at that venue from the perspective of a person with a disability and actually go with us to check out the venue and see from their perspective what - if it's an optimal space for a person with disability, and that was very, very helpful. Or for example, as a concrete example, in our project we have our parent advisors but then we wanted to - we were developing an intervention and they were very helpful in that development but then we wanted to verify it with a larger pool of parents to really make sure it's meeting the needs of parents of young children recently diagnosed with a disability, to be sure that this intervention really has the right content.
So we wanted to then get multiple perspectives, so we can go to the matching tool and say okay, who has a child who is under 10 years of age and have them complete a survey. Or it could be one group is developing an app for youth with disability and they want to get the perspective of both youth and parents of youth. So again they can go to the matching tool, whatever their criteria are, we could pull out potential parents and it would be for one specific task. So the matching tool allows us to go to a pool of - we now have close to a 100 people on that matching tool - for a very specific task, like it could be to look at a consent form, and to get just a broader pool of input.
And then you could say we only want to have parents of children with CP, for example; so it will pull out all the people that fit the criteria and they will be asked are you interested to participate in this specific task or whatever. We've had them look at things from a communications perspective that come up with our communications manager. So that's another way to bring more parents into the network, not to commit to a full project but to commit to a specific, like something specific, and still feel part of it. So I think that's been really terrific.
Our knowledge translation program has been tracking - every year they have projects completed IKT - Integrated Knowledge Translation tracking tool. So we're tracking to what extent patients are engaged in each project. We complete forms to see the ways that patients have been engaged, at each stage of a project, so not just at the start but all - we're following this longitudinally to see the ways that patients engage. Because it's hard to maintain that engagement at all different phases of the project, so to learn how people do that.
So that we have more impact that way in sort of - in ensuring that people really adopt a patient-oriented research approach. So they really understand that in - that this is an approach that ensures that your questions are relevant, that the ways you're doing your research are feasible and meaningful for patients, that the outcomes you're measuring are not only standardised and quantitative and what typical researchers use, but actually have relevance to those who live the experience that you're trying to study. So that the outcome measures are really the most relevant and most meaningful for the patient and their families, and that the interventions really are more likely to have an impact.
So looking at what we're measuring and giving us very good advice that we would never have thought of. So as an example we were doing socio-demographics and asking about parent income, and parent family framework - like if it was a single family to - you know different questions about the family. But they said like why do you need to know this information, like why do you need to know how much money we have as a family? So when we explained it to them they said oh, that makes a lot of sense, they said why don't you write that down and then people will understand the reasons why. Because it's - you know -
And also just with sequence in the way we ask questions, like to put things that are easier, less intimidating, upfront, and things that are a little bit more challenging later in the sequence of assessments. So just the sequencing and the way we ask questions and the explanations.
But we're trying to help - by helping support researchers doing their research using a patient-oriented research approach, we're more likely to influence the way they do research in the future. So we're really trying to build not only research teams that do patient oriented research by engaging patients, but eventually building a community of patient-oriented researchers, who then influence others so that it becomes like a trickle effect. That they then influence their trainees and -So that we have more impact that way in sort of - in ensuring that people really adopt a patient-oriented research approach. So they really understand that in - that this is an approach that ensures that your questions are relevant, that the ways you're doing your research are feasible and meaningful for patients, that the outcomes you're measuring are not only standardised and quantitative and what typical researchers use, but actually have relevance to those who live the experience that you're trying to study. So that the outcome measures are really the most relevant and most meaningful for the patient and their families, and that the interventions really are more likely to have an impact.
Well you know we did a think-tank in early February, the Executive, and we see like in the next two years as we complete our five-year mandate, we're looking at okay where do we need to get to in terms of patient engagement and building a community of patient-oriented researchers that's value-added. So we're really seeing - we're looking at where the gaps are to really get to where we want to be at the end of five years. And then we're thinking beyond that, in terms of sustainability, if we want to continue this network, what would be the next steps? And really we kind of see this as we're functioning as great research teams using patient-oriented research, starting to build a community of patient-oriented researchers, but we want to move from a community into a movement that really has influence. And so it's this idea of like this trickle effect that has more impact in terms of - that more people come onboard to the patient-oriented research approach and understanding where patient engagement is and how to do it, what the tools are and the methods that help promote effective engagement that's beneficial to all involved. But also to have more impact at more at the policy level and making sure that the researcher we're developing really is taken up and used so it's the KT aspect of it. You know you have these great products that will have following the research that we want to make sure is mobilised. You know that's part of that movement. [Laughter]
We're also measuring patient engagement; so again we're very committed to contributing to the science of patient engagement, particularly in child health research, particularly from a network perspective because a lot of the literature is focusing on research projects, but this is - you know it's a whole different scale when you're talking about a network with like multiple projects and activities going on. So we have measures of trust, measures of partnership that are being completed both by patients and by researchers, and we could look at individual research projects, we can look at committees and seeing where we need to provide more support, where there's some challenges. But overall we're seeing that engagement is definitely building and improving over time, so that's really important. We're hoping to do more of a qualitative approach as well, like to understand more from the experience to really enrich our understanding, so that's on our plan to do soon. We're also looking at just quantitative things in terms of engaging the broader community, so things like Twitter and people who read our - go to our website and things like that, just citizen engagement more broadly. So we're looking at just indicators like that. And we've developed levels of engagement.
So I would say that you know I was doing traditional research like most, you know where you have your own idea, you have your question, your PI, you assemble a team with different experts that relate to the project and you do the project and you disseminate in your traditional ways. But I would say you know once knowledge translation became a phenomenon in Canadian Institutes of Health Research (CIHR) in the last 12 or so years, through the School of Physical Occupational Therapy, through the - our school became very interested in knowledge translation. So I learnt more about it and how evidence, you know that we make sure that evidence is picked up and used by the appropriate target users.
So for many research projects, that could be clinicians or policy makers, but for some of the work that I've done in childhood disability, really an important target were families. So that's when I began to consider the patient and more broadly the family, in terms of the research I'm doing and whether it's meaningful or not to them. And whether the ways we disseminate the information is appropriate and meaningful and whether we actually did the project in a way that would best meet their needs.
So from knowledge translation I learnt about integrated knowledge translation which has that concept of involving the key stakeholders right from the start of the project. So that's sort of the beginnings of my understanding of patient engagement. So I kind of understood conceptually but when I really jumped into the deep end of patient engagement was when I had this wonderful opportunity to co-lead with others, CHILD-BRIGHT, which is a Strategy for Patient-Oriented Research (SPOR) network on chronic diseases, one of the five big chronic disease networks in Canada. So here we're focusing on children with brain-based developmental disabilities, so these are children with - could be a physical disability like Cerebral Palsy or a more developmental mental disability, like a learning disability or attention deficit disorder. Or has more psychosocial elements like the autism spectrum disorder.
And so when we think about patients, we use the CIHR definition of patients, which is not only the person who's directly implicated with the healthcare system, with the chronic condition, in this case a brain-based developmental disability, but we're also including the caregivers who really are really key to that experience.
And because our patients are - many of them are either too young to really participate actively in research as patient partners, or they may have communication challenges or cognitive challenges, for us the important patient partner are the parents. So in CHILD-BRIGHT, when we started to think about what are we going do the research on, so this was when we were writing the grant application, we brought together key stakeholders, so this was youth and young adults with disabilities, parents, policy makers, clinicians, researchers in the field of the disability, childhood disability, and we met twice in face-to-face meetings. And we came up with priorities, and we're very influenced by parents and the youth in terms of where they felt research should be prioritised.
Then we were fortunate to get funded, we had amazing funding partners, so those are important as well to acknowledge --because for this project we get $12.5 million from CIHR but we had to raise $12.5 million of matching funds. So, particularly the Children's Hospital Foundations across the country were important partners. So then in doing the projects we expect the projects to involve patient partners in all aspects of the research. So as one of the leads of CHILD-BRIGHT our role is really to help support patient engagement.
So we have different projects, different levels of commitment to patient engagement, as you would expect there are some projects that are incredible and others that are not as strong in patient engagement and sometimes it's the will, but more important the knowledge about how to do patient engagement. So we do have, aside from the research program, we have a training program where we're developing different tools to train on patient-oriented research, both for researchers, for graduate students who want to get into the area of patient-oriented research, but also for parents, for youth, and policy makers. So anyone who - any stakeholder that's interested to be part of patient-oriented research.
So we have a variety of tools we're developing; we've had online webinars, like lunchtime webinars that we have. We have a summer learning series for undergraduate students, they take part in workshops and there's a lab, so we work in a lab and at the same time they learn some things online but then they see it in action. So we have things for trainees, we have - now we're working together with the Ontario SPOR Support Unit and Canadian Child Health Clinician Scientist Program (CCHCSP) and ourselves, and I think [organization] as well, is a partner as well for the PORCH Program, which is the Patient-Oriented Research in Child Health Curriculum. So it's really - because it's really geared towards child's health research, using patient-oriented approaches. And these are online modules that are being developed both for researchers as a target, and other modules that are for patients and which will include parents.
So I think these will be very useful because they're short, they're very accessible because you could do it at any time, and then we do also have face-to-face workshops that we run as well in different cities across the country that delivers modification of the Canadian Institutes of Health Research (CIHR) workshops on patient-oriented research. So we're continuing to develop different training opportunities; I think in the future we're hoping to do more leadership-oriented patient-oriented research training, and also kind of like we have the basics, training about the basic concepts and what it is and how to do it, but we then want to do higher level, more advanced training where you actually use examples and scenarios and kind of see different potential challenges and look through solutions, to maximise engagement. So this is a work in progress, but training is an important piece, that people feel comfortable with the process, understand it and really with all potential stakeholders in mind. So that's one aspect.
So that voice is right in all elements of what we're doing in the network, which is really important. Also on our network steering committee we have two parents, so that really is guiding, steering the running - the functioning of our network. But in terms of strategies, one important strategy is financial compensation and as researchers it's part of our job to do research, it's like we're paid to do this and so whatever we do, we have a salary for that. So it's important to compensate patients in their efforts, whether it's being on committees or part of research teams. Or sometimes they represent us in different events or media or whatever, so in a way that they are partnering with us and giving up their time, we feel it's important to compensate that.We didn't go the route of an hourly rate because it's complex to do that. But instead used honorariums and came up with guidelines which are available online -
And I think that's a work in progress; like we started, we looked at the guidelines of Canadian Institutes for Health Research (CIHR) in all, like UK and other organisations that have guidelines available. But we also wanted to consider the unique perspective of child and family and the needs - differentiate the different needs that we had in the network that patient partners can play a role in our research project but they can also be on committees, they can be at events, they can attend our annual meeting. You know sometimes it's not only on an honorarium for their time on a committee, but it could be things like reimbursing for babysitting costs so they can attend the annual meeting, or things like that. So Citizen Engagement Council has been really instrumental in helping us build that guideline which we continue to go back to and add further elements as we discover different ways that patients are engaging with us. So that is very transparent and we reimburse patients every six months, so that's a regular and it's very clear to everyone what we do. So I think that's really important.