S2E3 - SPOR Evidence Alliance (interactive transcript)
Generating evidence-informed answers for all
Episode overview
In this episode, guests Andrea Tricco and Linda Wilhelm discuss the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance, a pan-Canadian initiative designed to promote evidence-informed health policy and practice change. They offer insights into the Alliance’s key activities, including the process used to accept and answer research queries from healthcare decision and policy makers and patients and the public, different ways to get involved, and tips and resources for academic researchers and patients and care partners looking to engage/be engaged in research.
Read on for the full episode transcript.
Meet our guests
Linda Wilhelm was diagnosed with Rheumatoid Arthritis in 1983 at the age of 23. After many years of unsuccessful treatments the disease was finally managed through the arrival of biologics. Linda is a founding member and current President of The Canadian Arthritis Patient Alliance (CAPA) and a patient partner with the SPOR Evidence Alliance and The Chronic Pain research networks.
Dr. Andrea C. Tricco is a Scientist and Director of the Knowledge Synthesis Team in the Knowledge Translation Program, Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Unity Health Toronto, and an Associate Professor at the University of Toronto in the Dalla Lana School of Public Health and Institute of Health Policy, Management, and Evaluation. Dr. Tricco is also the Nominated Principal Investigator of the SPOR Evidence Alliance funded by the Canadian Institutes of Health Research. The Alliance is a pan-Canadian initiative with the potential to improve patient care through national coordination of knowledge synthesis, knowledge translation, implementation and clinical practice guideline development.
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of contents
Resources
SPOR Evidence Alliance webinars: including recordings from their 2023 Annual General Meeting
Submit a research query to the SPOR Evidence Alliance as a …
FACETS SPOR Evidence Alliance collection: a collection of peer-reviewed (and freely available) articles that aim to disseminate knowledge about SPOR Evidence Alliance’s approach to bridging gaps in the research-to-practice continuum
Episode Transcript
Anna
Welcome to season two, episode three of asPERusual - a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. Today's episode marks a shift in focus for our podcast to a series of episodes that seek to bring awareness and understanding of existing infrastructure to support Canadian patient engagement in research.
I'm very excited to welcome Andrea Tricco and Linda Wilhelm onto our episode today to tell us about the Strategy for Patient Oriented Research's Evidence Alliance. Andrea and Linda, welcome!
Could you please tell the listeners a little bit about yourselves?
Andrea
Great, thank you so much for having me here today. It's such a pleasure to talk about a topic that I'm just incredibly passionate about. I am a scientist at Unity Health Toronto, and I'm also an associate professor at the Dalla Lana School of Public Health at the University of Toronto. I'm also the nominated principal investigator of the Strategy for Patient Oriented Research (or SPOR) Evidence Alliance, which is what we will be talking about today. And I have the honor and privilege of working with amazing patient partners such as Linda. So I'll turn it over to you now, Linda.
Linda
Hi, I'm Linda Wilhelm. I am president of the Canadian Arthritis Patient Alliance. I'm on the steering committee for the Evidence Alliance as a patient representative. I live with rheumatoid arthritis. I was diagnosed at the ripe old age of 23 -- 40 years ago this year. I've had a lot of interactions with the health care system over my life. Some of them productive, some of them not so great. So it prompted me to get involved when I needed a new medication 25 years ago and it wasn't approved in Canada. I set out to learn as much as I could at the time about the drug review system and realized that it really is very complex in this country -- probably more complex than many other countries. So I got involved as a patient partner in research because I figured if we have evidence, then maybe we can get policy change through showing government the evidence. My first love is advocacy. I wanted to help other patients and I want other patients to have good outcomes. Through research we can help to inform practice and change policy. That's my biggest motivation.
Anna
That's awesome. And you're absolutely right, Linda.
Could you guys start us off today by explaining what the SPOR Evidence Alliance is?
Andrea
Sure. The SPOR Evidence Alliance is a Canada-wide partnership between researchers, patients and the public, health care providers, and health decision makers. We were funded by the Canadian Institutes of Health Research back in 2017, as well as many different public and not for profit sector organizations.
Our mission is to promote a Canadian health system that is increasingly informed and continuously improved using scientific evidence.
Our approach includes using evidence informed methods to guide everything that we do.
Our research environment promotes inclusiveness, respect and collaboration.
Everything that we do is co-designed with decision makers. Our key decision makers are patient and public partners, as well as health care providers, health policy makers and basically anyone who would be impacted by our research findings.
In every project that we do through the SPOR Evidence Alliance, we try to have patient and public partners involved. We try to have our clinical or content experts involved, policy decision makers involved, as well as the researchers, research staff and trainees. And we come together to co-create or co-produce a project. We have several examples where we have co-authorship of multiple different types of knowledge users or decision makers on the team. And we're incredibly proud of the approach that we use.
Anna
It definitely sounds impressive, and it also seems like a perfect fit for Linda's aspirations and her reason for getting into research and advocacy.
Could you tell us a little bit more about the history of the network -- how it came to be?
Linda has been with us since the very, very beginning. Right, Linda? We've been working together for a long time. Actually, Linda and I, we have a history of working together, even with the Drug Safety and Effectiveness Network. That was even before the SPOR Evidence Alliance. It's just fantastic to work with amazing patient and public partners such as Linda.
In terms of the history, CIHR had released a call for proposals, I believe it was in December of 2016, with the application due in the spring of 2017. Then after about six months, we were very proud and privileged to be the selected team to take on the SPOR Evidence Alliance. That was announced in September of 2017.
It took us a while to get up and running, because one of the main features of the SPOR Evidence Alliance is that we accept projects that come from policy decision makers. Our first milestone was trying to find a mechanism where we can have requests come in (aka queries) from policy decision makers, and can answer them using knowledge synthesis methods, clinical practice guidelines, or knowledge translation within a focus of patient oriented research. That was the biggest milestone for us -- which happened in April of 2018 -- being able to start accepting those queries.
Then as time has evolved, we have picked up a lot of other functions that were part of our objectives. For example, another key thing that we do is capacity building. We provide capacity building to 30 plus research teams across the country on how to do proper patient engagement, how to work with policy decision makers, and on methods. One of our main products is the rapid review. We've done a lot of methods work and methods capacity building in that space.
We've also done capacity building with patient and public partners that have been co-led by patient and public partners. Linda has been a coach and heavily involved in the two courses that we have run for patient and public partners. We have trained up a cohort of about 46 members across Canada who are then able to participate in rapid reviews and other types of knowledge synthesis as equal members of the research team. That was a piece that came on a little bit later.
We also have a mechanism where patient and public partners can submit topics that go through a prioritization process with a panel. The ones that are selected to proceed are actually co-led by the submitting patient and public partner. We're trying to get to the highest level of autonomy for patient and public partners. Of course, the ultimate highest would be that they hold the funding and make all of the decisions. But we're trying to work within the Canadian Institutes of Health Research’s (CIHR’s) rules, so that we can have patient and public partners engage as part of a co-leadership model that’s really co-leading those projects. To date, we have completed three projects like this and we have prioritized another 20 projects.
That kind of gives you a flavor of some of the different types of things that we've done with the SPOR Evidence Alliance, and how it has progressed over time.
Linda
I was involved right from the very beginning with the Evidence Alliance. I was involved in the initial application in 2016. I was involved in the review of the application and the evaluation of patient engagement. I was really excited because we had external evaluation through Clayon Hamilton and his patient engagement framework that I'd actually worked on like ten years before. It was nice to see the framework come into action through the Evidence Alliance, to co-author papers, and the training that I've received for rapid reviews and knowledge synthesis has been so valuable. You can imagine during Covid when decision makers and policy makers were saying, we need to know, we need to know, having the Evidence Alliance in a position where we were well set up at that time to take those queries about Covid and run with them [was amazing]. I worked on one about the Moderna vaccine and the incidence of myocarditis and pericarditis for young people. That was such valuable information for parents because we saw that it was happening mostly in younger men. When you get to do the rapid review and get that information out in the hands of patients before they have to make vaccine decisions, that's really important work.
Anna
Could you help us better understand how these queries work?
Do they always result in, perhaps as a first step, your group conducting a rapid review? Is it always the same group of people who do conduct the work? Can you walk us through the process?
Andrea
Absolutely. I would be happy to. We have two mechanisms:
The other mechanism is for patient and public and community organizations, which is a completely separate process.
Policy decision makers submit a research request using a simple online form. The form asks them: what question they're trying to answer, what decision they need to make, what's their timeline, do they have funding? Questions like this.
Then what we do is we try to set up an intake call with them where we try to gain more clarity on the question and see whether there has been evidence collected before. For example, do they know of studies that are relevant? We call those seed studies or seed papers that would be useful to them, and they want to find more in that area. Perhaps they're not aware of anything being done in the area. So we would start off with that intake call and really try to understand what kind of a product would be most helpful to them. Then we decide what kind of a method we can use. We can use 40 plus different types of knowledge syntheses. Oftentimes we end up doing rapid reviews or rapid scoping reviews, which provide a very broad snapshot of the literature where we're trying to find out what has been done before on that topic. We would work with librarians to see what has been done before, and if it even makes sense to proceed with this. So, that's kind of how we would start off with that.
Sometimes policy decision makers do come to us with a knowledge translation question. For example, perhaps they have tried to implement a program within their organization. Perhaps they have created guidelines that they now they need to disseminate. We would then use very different methods for the knowledge translation piece so that we could support them getting that evidence out to the decision makers or end users who need that evidence.
When it comes to the knowledge synthesis, once we've decided on a method, we look at the topic and then we have 30 plus teams across the country that are highly specialized teams in knowledge synthesis and knowledge translation that can actually lead the query. We reach out to them and we may say, Health Canada or whatever organization has come to us with this particular problem, this question, that we believe could be answered through a rapid review, as an example. They have a three-month timeline, they do have a bit of funding that can be used to fund you and your team to do this project, would you be interested in taking this on?
Then we talk to the team and we also say to them, by the way, we also would like you to engage with patient and public partners on your project. Do you need us to connect you to patient and public partners? If they do, we have another simple form that we ask the researchers to fill out, that we send to our cadre of patient and public partners across the country who are highly trained and have done this work before. We ask them, is this an area where you have lived experience? Is this a project you'd like to work on? Have you worked with the team before? We start thinking about that relationship building between the different partners.
Then we ask them if they have trainees that can work on the project as well. Do they have clinicians or content experts? If not, we really act as a broker to bring these people together so that the project can get done. We also provide the research teams with several tools that can be found on our website. So all kinds of different webinars that we've done in the past on the methods, on the collaboration, on how we create a safe space for the team because there are power differentials, how to make sure that the patient's voice is heard.
One of our main missions is to try to bring the patient's voice as close as possible to policy decision making. So we also think about innovations that can make the patient's voice heard. One thing we do is in our executive summary we have a patient's interpretation of the evidence. So the patient or public partner who collaborated on that project, they're able to provide their perspective on what it means. Really at the end of the day, we want a project that is co-created, where everyone feels like they sat on the team as an equal member, that their voices were heard, their opinions mattered, and that they co-owned this piece of work. So that's what we do when it comes to policy decision makers.
If let's say, we find out that there is no evidence available -- at the Evidence Alliance, we only focus on knowledge synthesis, knowledge translation and guidelines. Then we would say, well, maybe they need to go to the SPOR Data Platform. Maybe they need to go to different initiatives. Maybe the randomized trial platforms that have been set up across the country to consider potentially doing primary research in that area. But that would not be conducted by the SPOR Evidence Alliance teams. I'm not sure, Linda, if you wanted to add anything to the process or maybe speak to the patient and public process a little bit.
Linda
The patient and public falls along a very similar process. As a patient I've submitted queries. Initially, only a couple of queries were funded for a couple of years. Then this year was really exciting because 25 queries [were funded] and my query got funded. So I'm excited about that. The process is the same. You submit your query and then you do an intake call because there might be another query from another patient partner that's very similar to the one that you put in. Is there a way that we can combine those two queries and make it into one query, and thus we can help more patient partners understand?
That was one of the things that -- Andrea spoke about the Drug Safety and Effectiveness Network. I was on their steering committee for ten years, and that was one of the things I got frustrated about because they only accepted queries from like CADTH and Health Canada and maybe the provinces as well, but they would never accept a query from a public or a patient. And that was frustrating to me because I had lots of queries I would like answers for. So that was exciting. It’s the same type of process, which is really great because it just shows that it is taken seriously. And we can get this evidence to really inform policy.
Anna
Can literally anyone, as long as they are a policymaker or a patient or care partner, submit a query? And how does that adjudication process work then for deciding which ones are going to be pursued?
Andrea
That's a great question. Anyone, even healthcare providers, any decision makers in the health system can submit queries.
So when it comes to policy or the healthcare provider query process, that process is separate from the patient and public and community organization process. What happens is that they would come in and we would check to see -- we have a certain amount of funding from CIHR for a certain number of queries every year -- so we would check to see if we still have funding for it. And then if not, we would have to ask the organization if they can fund it in full.
Then we would check to see if it has ever been done before. We do the literature searches because we try not to increase research waste, we actually try to reduce it. So if it's been done before, if a high quality systematic review, as an example, exists in the last five years, then what we would do is we would write a lay summary of that or a policy brief on that and send it to whoever submitted that query and say, this has been done before, here it is, hopefully that's helpful to you. We really want to make sure we're only addressing research gaps so that we're not increasing research waste.
Then we would see, if perhaps we don't have funding for it, do they have funding for it? If the query comes from Health Canada or a Public Health Agency of Canada, they have to fund it in full, because CIHR has asked us not to use our funding from the federal government through research dollars for that. So they would have to pay for it, of course, because we all have to pay for our staff and whatnot. We also have an extensive compensation appreciation policy for patient and public partners that we co-created with patient partners that we can speak to as well.
When it comes to the patient and public partner and community organization queries, that has never gone through a prioritization process yet. So usually, when Health Canada comes to us, they've already done some kind of prioritization in-house to say that this topic is a priority. Now with individual patient partners or community members and whatnot, these are very important topics for those with lived experience, but perhaps they haven't been prioritized. And like Linda said, perhaps there are multiple people who have the same question that we could potentially bring together, because one of our big roles is to bring people together to do this research together.
So we would go through a prioritization panel, where we would have quite a few patient and public partners, policy decision makers, health system managers, for example, health care providers and researchers on the panel, as well as trainees. And we would prioritize which of these projects or topics we feel is the most impactful. And then again, according to the CIHR funding that we receive, we have a certain number of projects that we can fund through that mechanism as well.
We also work with Indigenous Partners too who are working with different communities across Canada. We have a certain budget ear marked for that really, really important work. And so we would make sure that a certain number of projects or questions are being answered with that amount of money as well.
Anna
I can’t help but commend you both on being able to bring together something of such sheer magnitude and run it so efficiently. And my last question on that topic is…
Can anybody become one of those research teams that you potentially contact to conduct the knowledge syntheses, or is it perhaps only open to your members?
If so, how does membership work?
Andrea
That's a great question. Thank you Anna. We welcome everyone with open arms. Anyone who wants to be a member of the Evidence Alliance in Canada and internationally is welcome to join. If it's a trainee, we ask them to also have their supervisor join because there are many different benefits for trainees. For example, they can participate in a project like we've talked about. We also have an annual seed grant that has different themes every year, where we provide early career researchers as well as trainees with $10,000 of seed funding towards whatever idea that they're working on. We have patient and public partners who peer review that alongside researchers.
We also have many different capacity building events. We have webinars, we have our annual general meeting that anyone can attend. Even if you're not a member of the Evidence Alliance you can attend. We held that two weeks ago where we had some really interesting discussions on trauma informed approaches to patient and public engagement, which was really great. We had a really fascinating panel of lived experience and working with communities within the lived experience domain and those experiencing health inequities. That was really great. There's many different ways that people can get involved. We also have our governance committees. Four of them are co-chaired by patient and public partners. Linda has been a long-standing member of our governance structure since day one. We also have different membership opportunities in those different committees as well.
In terms of how do you become a research team? It would be teams that have expertise in doing knowledge synthesis and knowledge translation across the country. To be involved, you would email someone within the team, someone within the SPOR Evidence Alliance Network, and just say that I'm doing rapid reviews or whatnot, or I'm interested in doing scoping reviews and how can I get involved? We're happy to have the discussion and make sure you have the capacity and the expertise, of course, to do that.
We've never turned away a team before. Sometimes what we've done is applied a co-leadership model where we've shared staff between teams. So like a more junior team, we team them up with a more senior team and they provide the capacity building and they share staff and they share the funding and everyone becomes co-authors on those projects. We do have a few case examples where we have done that for less experienced teams. And then those teams actually move forward and take on more queries by themselves, which is great. We've also had this experience with trainees where at the start they were more participating as a member, and then later on they actually started leading the queries themselves because they now have that expertise.
I think the same goes with the patient and public partners. Oftentimes we'll pair up a more senior patient in public partner with a more junior one. They give each other coaching and they kind of learn together. Then the more junior patient public partner becomes a senior one next time, and they use that coaching model as well. We really believe in continuous growth and coming at things from a capacity building perspective and really allowing people to grow and learn and also develop those relationships with policy decision makers and patient public partners and continue on so that it's not just the senior people always doing the work, but really it's the next generation of scientists and the next generation of patient and public partners. A core component of what we do at the SPOR Evidence Alliance is leaving a legacy so that when we're all gone, this very good work continues and that people are properly placed and have the expertise to do this work and continue carrying the flag.
Linda
To add to that, patient partners actually deliver a lot of the training and co-develop a lot of the training as well. Two of our Evidence Alliance patient partners have been leading a lot of it -- Janet Gunderson and Maureen Smith. They're absolutely amazing and fabulous at it. You try to pull out everybody's strengths. I do a lot of training as well. I haven't for the Evidence Alliance, but I do for other networks. I really have benefited from the training. I’d done rapid reviews before I took the training, but I really felt a lot more capable after I took the training. To have it from two other patient partners works really well.
Andrea
Linda has just been phenomenal with a lot of webinars that we've done together for the research teams. We have done capacity building together for sure and helping research teams. Also, I know you're involved with the appreciation policy and making sure it makes sense, which we're trying to revamp. And I believe you're involved with a conflict of interest policy as well. So Linda's been involved with everything, as you hear Anna. In everything we do -- whether it's a policy, whether it's a project, whether it's a process, whether it's peer review -- we really want all of that to be co-designed and co-created with our patient and public partners.
Linda
And just like a thing, something that seems so simple, but never nobody ever did it for me before the Evidence Alliance was to work on my CIHR CV. Okay, now they have at least a biosketch. When I first started, it was not very patient friendly and for a patient to fill out that form was kind of frustrating. But then through that, they've adopted that and now have a more patient focused CV. It's the Evidence Alliance that really helped me navigate that and get a pin number. It sounds so simple, but it's hard to be a patient partner and engage in research if you don't have that. Not every research network is in a position or willing to help you with that kind of thing.
Andrea
Thank you for mentioning that, Linda. We love to support and help out in any way. Whether it's formatting your CV for CIHR, or helping ask questions on other areas, or any way we can provide support, we're really there because we do see this as a partnership.
Anna
Before we go in and explore your approach to engagement within the network, I just also want to validate how impressive and awesome it is -- your commitment to capacity building and your openness to it. It sounds like anyone can become a member, become trained up and really contribute to the research endeavors.
Linda
I just want to put a shout out for our staff that work at the Alliance who are so skilled, and I don't think that we could do any of this without them. They are so easy to work with.
Andrea
They just want to help and they want to do good work and any way that they can support anyone in the network is exactly what they're there for. So thank you for reminding me, Linda, to give a huge shout out to our central team of the SPOR Evidence Alliance. They're just a fantastic group of people.
Anna
I also checked out your annual general meeting. I wrote down the wrong date, so I ended up missing it, but I can't recommend it enough to people next year. In your write up, it seemed like you had so many engaging speakers as well to help teach people about trauma informed approaches to research, and it seemed like if people attended, they could not only learn more about the Evidence Alliance and how to be involved in it, but then also learn about important and hot topics and research as well. So I just want to say that it's going to be circled in red in my calendar next year as well, because I had really wanted to attend it this year. So anybody out there also check it [the annual general meeting] out yourself as well.
Linda
The trauma informed engagement session was really interesting for me. I've done a lot of patient engagement over the years. As I said, I've interacted with the system. I had some fairly negative experiences. So it's something that has happened to me in different roles where I'll re-live a particularly traumatic point in my life and how to manage that and how to deal with that. I just had a call this morning, actually, where we were talking about that as well -- trauma informed processes and how to how to manage that and how to help people get through that. And I'm hoping that webinar that we did at the annual meeting, we can come out and make that a resource for other people to deliver that type of workshop.
Andrea
Yes, 100% Linda. So just to let you know, also, Anna, so sorry you missed our day. But everything is going to be recorded and posted on our website, so you can stay tuned to that. The team is doing a little bit of editing on it, but all of the various sessions will be posted. And to your point, Linda, if you feel that you know anyone in your network would benefit from watching that session, in particular on the trauma informed approaches, please do share that widely. For anyone who's listening, if you are interested, it will be posted on the SPOR Evidence Alliance website. There is a section in there for all the previous webinars. So, you'll also see previous webinars done by Linda and myself and others as well. We'll probably have a post on this podcast as well there. So, for those of you who want to share those materials, please feel free to.
Anna
Switching gears a little, could you please tell us about some of the different ways that patients are engaged within the network and any supports that facilitate that engagement?
Linda
The one thing I'd like to mention is that the patients that I know within the network, they do what they want to do and what they're passionate about. I do a lot of work around governance and oversight of making sure patient engagement is included. Others might be more engaged in training, like Maureen and Janet. Others might just want to participate in a rapid review, and that's all they want to do. The Evidence Alliance has always tried to facilitate what patients are interested in working on and no pressure to take on more. But also there's the opportunity to take on more and learn more if that's what you want to do.
Anna
Are there any key considerations that you've learned about patient engagement through your involvement with the SPOR Evidence Alliance?
Linda
I think for me, it's about that the openness to improving and the openness and the flexibility on how patients engage. Everybody's different. There's always acknowledgment that everybody is different. Some people are at a point where they might want to do a rapid review, and that's it. Some people want to participate in a research project. Some people want to be on a steering committee. There’s always that constant support and acknowledgement that you're accepted for whatever your contributions are and your contributions are valuable. I've always felt like my participation with the Evidence Alliance brings that value and they appreciate the perspective that I bring to the conversations. It’s been for me the gold standard in patient engagement. There's a couple of things that I work on. One is a New Brunswick project that I'm involved with on case management and primary care. It's been a wonderful experience working with them for the same reasons -- you do feel your value.
Andrea
It’s just been such a great learning opportunity for me. When I started on this journey in 2017, I really had no clue about patient and public engagement. I've just learned so much being able to work alongside with Linda and so many other people who've been doing this for many, many years before me. I think in this space, you really have to come to it with a growth mindset and a learning mindset and a continuous quality improvement mindset.
So as Linda mentioned previously, we do several evaluations of our patient engagement on an ongoing basis to make sure that we are keeping people engaged, that we are doing things correctly. We’re very cognizant of the potential for retraumatizing people. We do not want to do that. Coming into this with the best of intentions and really making sure that the engagement is not tokenistic and that it really is people coming together as equal members on the team. So for myself, I have learned so much and it is special thanks to people like Linda who have held my hand along the way and have told me when I could do things differently or consider things differently in a very nice, gentle way. As researchers, sometimes we're used to everything being done the way we want things to be done. But doing patient and public engagement is a very different way of operating. We really need to let the patient and public partners take the lead and learn from them and grow together, and always find ways to grow and always find ways to make sure that we're improving as time goes on.
Linda
It's interesting because in the one project on evaluation of patient engagement in the Alliance with Clay, some of the recommendations that came out… by the time we finished the focus groups and the workshop, probably half of the recommendations had already been implemented. So that's a testament to how they're acting on things and how sometimes even before it's identified as an issue, it's already there getting resolved and addressed.
Anna
That's amazing. It definitely sounds like the capacity building and all of the investment in growth, is not only external but internal as well which is great to see within any sort of group or organization. As my last question, I'm going to ask…
Is there anything else that you would like to share about the SPOR Evidence Alliance that you haven't shared already? And I'm also wondering whether you could share any key takeaways that you'd like to leave the listeners with.
Linda
I guess I'll kick off. I don't think there's anything additional I need to share. I think we've talked a lot about how well things work. I guess some of the key takeaways were the communication and the inclusiveness of the engagement. I think for the Evidence Alliance, all the patient partners feel that if they have a concern, they can bring it forward and they don't have to figure out how to they're going to talk to Andrea about it. She's been open. Everybody at the Alliance, all the staff at the coordinating office are very open to hearing from patients. I think that's made the patient partners feel very comfortable in coming forward when they have ideas or concerns or thoughts.
Andrea
Thank you so much, Linda. I completely agree with that. Communication is key, as well as really creating that positive environment for people to collaborate together and making sure that everyone is there as equal members of the team. [It’s also important to] try to change the culture of research within Canada so that we are more open to patient and public engagement and seeing the value and actually letting them lead the way and giving them the highest level of authority.
I think we still have some advocacy to do with our health research funder. It sounds like they will be potentially launching some new and different initiatives to allow that to happen in the future, which I think would be really great. So I think more opportunities for patient partners at least to co-lead, if not lead the research. What we have found is that even at the question stage, the input from patient and public partners is so valuable and the most important questions actually come from those who are living with the condition. Sometimes we think as researchers or policymakers we know best, but really it's those who've lived with this condition for 25 years plus that actually know the health system better than any of us. We really need to take their lead.
If you are planning as a researcher to do more within the patient engagement realm, definitely find some people who are wanting to work with you on that and that can guide you. Like I said, working with Linda and others within the SPOR Evidence Alliance has really helped me know how to do this properly and know how to do this in a way that’s as supportive as possible to patient and public partners, and making sure that they are feeling engaged and that they are feeling heard. So, it is a different way of doing research, and we want to encourage people to do that.
At the same time, make sure that you have the resources and you have the connections in place to be able to make sure that you do it well. Make sure that you have a good appreciation policy. How will you make sure that you show your appreciation to the patient and public partner? Will you offer them perhaps a stipend for their time? Will you offer them authorship? If they've been involved in that project, they absolutely fulfill the intellectual property requirements that are set by medical journals as an example for them to be authors. Perhaps sometimes they don't want to be listed as authors because perhaps it's a condition that may be stigmatized, or perhaps they are just not comfortable being listed or named. You have to follow whatever the patient and public partners want, so you have to have a talk with them. How can I show my appreciation for you properly? Sometimes they may not be able to receive payment because they may have disability insurance and there may be tax implications. There are things that are going on in their lives that we just can't even think about, so we have to talk to them and ask them what would be your preference? How can we show our appreciation? How can we acknowledge you on this project? Do you want to be listed as an author? Do you want to be listed in the acknowledgements? Do you not want to be listed at all?
Have a real solid plan for engagement. When do you need them to engage? What will their tasks be? A little exercise that we like to do for every project is thinking through the roles or the time points of engagement. How will we communicate together? When will the updates be provided? As Linda said, communication here is really key and you need to do a lot more communication when you're working with such a diversity of knowledge users on the team. So that's really key. Think through all of those issues and make sure that you have a really solid plan that also include how you are going to report your engagement as well and what you will you do if a problem comes up with engagement. Who will get involved? How will you handle it in a respectful way that is not retraumatizing? How will you disseminate your findings? Will you write a lay summary or ask a patient or public partner to write a summary on your project? Will you report your public engagement using the checklists that are available out there? Will you evaluate your patient engagement on an ongoing basis? Again, to make sure that you are doing this in a way that is meaningful, and also that people are feeling that they have been engaged properly in whatever preference they have. Engagement has to be set and has to be evaluated to make sure that you're doing this in a very effective way.
Linda
To add to that, make sure that you have good training in place for your patient partners. When patient partners are new to it, they don't always understand the research process. You have to give them that basic foundational knowledge of the research process, of patient engagement, of CIHR and all these players, so they can understand the whole ecosystem and can come in and have those tools to be able to contribute.
Anna
Those are really powerful and helpful closing words. So thanks so much, Andrea and Linda, for coming on and sharing all of your knowledge, wisdom and activities with us. For those of you out there listening, please be sure to check out our website asperusual.substack.com for resources from today's episode, and interactive transcripts from this and previous episodes. Please also remember to subscribe to this podcast through our website or wherever it is that you download your podcast episodes. If you'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in. Until next time, let's keep working together to make patient engagement in research the standard, or as per usual.
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