In this episode, we are joined by Norm Buckley, the Scientific Director, and Delane Linkiewich, a patient partner, of the Strategy for Patient-Oriented Research’s Chronic Pain Network. Norman and Delane discuss the history of the network, including how it originated from years of grassroots work carried out by trail blazing physicians who innately understood the importance of patient partnership and experience. They also share details of the network’s formation, its open-minded approach to creating a community of support that truly listens to patients and incorporates their input into the research process, and engage the listener in critical thinking around the importance of patient partner compensation.
Read on for the full episode transcript!
Meet our guests
Delane Linkiewich: has been living with chronic pain for over 15 years and is a passionate advocate for people living with pain and patient engagement. Delane is currently a PhD student in the Clinical Child and Adolescent Psychology Program at the University of Guelph where she conducts patient-oriented research on peer support for pediatric chronic pain. She has been a member of the Chronic Pain Network since 2018 and sits on the Patient Engagement Committee, having co-chaired this committee for 2 years.
Hi everyone. Welcome back to asPERusual a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. Today's episode is a continuation of our series aimed at bringing awareness and understanding of existing Strategy for Patient-Oriented Research, or SPOR for short, entities. And with us today, we have two representatives from the SPOR Chronic Pain Network. Norman and Delaine,
Could you please introduce yourselves to our listeners?
Delane
Hi everyone. My name is Delane Linkiewich. Thanks, Anna, for having us here today. I am a patient partner with the Chronic Pain Network, and I've been with the network since 2018. I sit on the Patient Engagement Committee of the Chronic Pain Network, and I'm super excited to talk about the Chronic Pain Network as well as patient engagement today.
Norman
Thanks, Anna. My name is Norm Buckley. I am the nominated principal investigator for the Chronic Pain Network. I'm an anesthesiologist and chronic pain clinician based at McMaster University. I also hold a position here as a Scientific Director of the Michael G. DeGroote Institute for Pain Research and Care. But a lot of my work, even from that institute side, has been working with the Chronic Pain Network, which started in 2016. It’ll be interesting for me to hear what you've heard about the network and so on. So it's fun. Thanks for the invitation.
Anna
Thanks so much for coming on and joining us today. Why don't we start off with having you guys
Tell all of us about what the Chronic Pain Network is and how it came to be.
Norman
Okay, I'll start with that one. So you mentioned the Strategy for Patient-Oriented Research (SPOR) program at the Canadian Institutes of Health Research. That program has been in place since about 2010, and is a national collaboration between CIHR and provincial research funding. And it really was intended to not just establish but disseminate and really promote the concept of engaging patients in research. In 2015, CIHR opened a competition for research networks focused on chronic disease to develop strategies that incorporated the concept of patient engagement in research. And so we were, as it turned out, fortunate to be one of the five chronic disease networks that were were selected to proceed. And we were funded from 2016.
What the network has done is, it's brought together a really interesting collection of pain researchers and clinicians and educators, but also people with lived experience in pain. I'll let Delane describe a little bit better in a moment how that's worked from the patient partner standpoint. But really, we were quite frankly, I won't quite say making it up as we went along… but it was pretty early days in our experience, from the chronic pain research standpoint, of how to actually operationalize the idea of patient engagement in research. So…
We started out with some principles. For example, patients have to be involved in the governance of the network as committee co-chairs.
Since we started, patients have also driven two processes — one for adults and one for pediatrics — in identifying pain research priorities. So what were the key priorities that they felt pain researchers should focus on to address the questions of greatest importance?
Also one of the really interesting things that happened is that having created a forum for patients to engage with professionals across the country, the patient partners also became a resource for policymakers in the country. So people like Health Canada, for example, came to the network to say, we need to revisit our our opioid crisis response strategy, for example, because we've perceived that pain patients have not been well served by the approach that was taken from, say 2015/2016 by the Opioid Crisis Response Team. And so in 2018, they revisited that with a terrific lot of input from the Chronic Pain Network patient partners.
So I guess what's happened is there's now a process and a team. And acceptance from the professional side of the equation that there's big value to having patients actively engaged, not just as the recipients of our brilliance and unwavering pursuit of truth and goodness and so on. But just being part of the team from the beginning to say — Is this an important question? How should we do it? If I phone you up and say, will you participate in this research, what's your response? What will make it interesting to you?What do we have to do to support that? That's the sort of organizational side of it, I think.
Delane
I’ll jump in here and talk a little bit about the patient partners. So I was so fortunate to be brought in to the Chronic Pain Network as a patient partner, as I said, in 2018. And really, people with lived experience of chronic pain are at the heart of the network:
We're involved in influencing priorities and decision making.
There's been patient partners involved from the very beginning when the call was made for the SPOR networks and it's only continued to grow.
We’re involved at the level of governance.
All of the committees at the Chronic Pain Network have patient partners on as members.
There's so many things that have happened that patient partners have been involved in, either from research projects and being involved as patient partners or influencing policy.
One of the really beautiful things that has happened from the Chronic Pain Network and having all of these people who have lived experience brought together is the ability to look at what the priorities are for people living with painin Canada and todevelop things where there are gaps. So like, for instance, one of the things that we did was we came together and say, there's this gap in bringing people with lived experience together. So from conversations between the Chronic Pain Network and Pain Canada and Pain BC, what ended up happening is we developed this whole conference for people living with pain, and it's called the Putting the Pieces Together conference, and it's a conference formed by people living with pain. So again, that was just created from conversations from some of us at the network that were like, we want to come together and show this community that we have. So that's really just one of many examples of how the Chronic Pain Network has really played a huge role in bringing people's lived experiences and their voices to the forefront.
Anna
Thank you so much.
Could you help the listener better understand exactly what the network is in terms of the types of activities that it does?
It sounds like it brings together people with lived experience of pain and also researchers, and that you work together to create or to identify priorities for pain research. It also sounds like you work with the government and other organizations to address different priorities that they may bring to you. So then from that, is the pain network basically a collective of pain researchers and people with lived experience that come together and work on different things? Or how does that exactly work? Are there certain activities that the different committees focus on or can you help me understand that a little bit better?
Norman
When the call came from CIHR to submit proposals for these networks, there were certain goals that they had:
CIHR is a funding body that supports research. So obviously they wanted to support research. And their specific call was that they wanted to support patient-oriented research, which means that it meets these criteria that we've been talking about where we have patient involvement in priority setting, conduct of the research, dissemination of the research, etc.
But also because it's a research network, and one of the things that they wanted to do is to increase the number of effective researchers who have adopted this patient-oriented approach to research, we were asked to also include activities described as training and mentoring.
So our approach was kind of simple. Everything they asked us to do, we created a committee to do it.
They said they wanted a training and mentoring program — we created a training and mentoring committee. We sought interest from the people participating in the network. Who's interested in this area, and what sort of training and mentoring activity would we offer? So we would, for example, put together a knowledge translation exercise to explain to trainees, bring them together in a social setting, but explain to them what the network is, how it works, how you go about incorporating patients into your research. So that was one of the things. There's a program called Pain in Children's Health (PICH), which has been operating for a number of years now. But we adopted some of their activities and supported them. And again, they they focus on pediatric pain research, but also describing the process of engaging patients in that. And they have a number of events through the years. Some of them are large lecture style events. Some of them are almost mini conferences, where they bring people together. And so we conducted certain training and mentoring activities.
We had a knowledge translation strategy —- one of the really, really big problems in the world of health care research is the amount of time it takes from the time you have an idea to working it out, conducting some research to test your hypothesis, find out what you can do that works. And even once you've found something that is effective, that time gap from knowledge to effective translation of that knowledge into clinical activity can be appallingly long. I mean, it can be, as it's been described, as long as 17 years from when you know something to when pretty much everybody is doing it. So that's referred to as the Death Valleys of knowledge translation. One from basic science to clinical science, the next from clinical hypothesis testing to actual clinical impact. And one of CIHR’s goals was to shorten those times so we were asked to develop a knowledge translation strategy. And in fact, from the first iteration of the network that we've taken to calling CPN (so the chronic pain network) we're now in what we refer to as CPN-KMIS (so knowledge mobilization, implementation science). It's a separate bundle of funding. It continues on after the completion of the first bundle, which is winding up about now. It was supposed to be five years from 2016, but between Covid and other things we’re finally spending the last of the money now.
Now we have another four years to focus on creating a knowledge mobilization process, which brings in some different players, some of the same players. But the idea that you take this knowledge, identify it, and then quickly push it out, that was one of the goals in CPN and it's now become the main focus of the network.
Some of the other things were simply governance. Things like:
We had our research committee that looked at all of the funded projects. So in CPN we had funding that we were able to direct to specific projects. I think we funded about 26 projects in a half a dozen different areas of pain research across the country. Some of them were basic science, some of them were collecting genetic data, some of them were behavioral science, some of it was reviewing population health data, and some of it was focused on indigenous health care. The patient-oriented research team was responsible for reviewing the progress of those projects — are they meeting their timelines for patient recruitment, if that's an issue, or have they effectively incorporated patients into the research?
We had a governance committee called the Patient Engagement Committee that was responsible for saying, how were we doing with our patients? Do we have a process for bringing new patients in? Are all of our patients effectively engaged? Do all the researchers who want a patient to work with in their team, have they found one? Are all those relationships going well? Do we need to do a little bit of, you know, dating game to make sure we get the right people in the right place and everybody's getting along, that sort of thing.
So that's really how we structured it. There were multiple goals, but our overarching goal, quite simply put, was to change the way pain is managed in Canada. And I think to some extent, we can claim that we've had a significant impact on the way pain is managed in Canada at a number of levels.
Delane
I think the network does so many things. We've gone from focusing on research to now focusing on knowledge mobilization and implementation science. And as I mentioned before, people's lived experience and our patient partners are involved at every step. I think that's really been one of the the main reasons that we've changed how pain is managed in Canada. The chronic pain network has brought together so many of those voices of people living with pain, and to have people from all across Canada and different ages and different people with different pain conditions, there's really this beautiful cross sectional group of people coming together so we have so many different voices at the table.
We've continued to bring in more voices on the Patient Engagement Committee, we've been working really hard to bring in even more people with lived experience to bring their voices into all of the different committees in this new iteration of the network. Through that, we've been able to influence priorities and influence the decision making. And so patient partners are really at the heart of the network.
Anna
I have a two part question, but I think I'll start with the second part first. When you mention membership and bringing people in,
how exactly does membership work?
If any of the listeners want to join, is there a process, or is it more something where you're brought in, or could you help us understand that a little bit more?
Delane
That's a great question. So through the Patient Engagement Committee we're working together. And we also have a wonderful engagement lead, Divya, who works really hard with all of our patient partners on the network, as well as people who are interested in being involved in the network. So I believe there's different ways to become involved. I think we're currently looking for more members for the rest of the committees on the Chronic Pain Network. We just finished bringing in people for the Patient Engagement Committee and we are looking for people who can bring different experiences to the table. So that can be done through contacting the Chronic Pain Network and then we can connect you with Divya.
We have a little bit of a process that the Patient Engagement Committee was actually really integral in creating, where we'll ask questions about whether you have previous experience… although I think one thing that we've really come to believe within the Chronic Pain Network and the Patient Engagement Committee is that everybody has experiences and expertise within their lived experiences. And so, like for me, for example, when I first came on to the Chronic Pain Network, I had zero committee experience really, and I had no idea what patient engagement was. It was really my first time with them coming into the pain community. And like many others, I think we've all really grown together and now there are so many different ways that we’re involved. And I'm going a little bit tangential here. But anyways, you can contact Divya and then we can figure out whether it's on a committee that you can be involved, or whether we need people who can be involved in knowledge mobilization and implementation science endeavors. But really, there's lots of ways that we're looking to engage other people with lived experience.
Anna
That's great. We’ll be sure to put the contact information on our website along with this episode as well. For anyone who is listening, you can also Google Chronic Pain Network Canada and find the information there as well. So what about on the research side?
What if you're not a person with lived experience, but rather a researcher that would like to get involved?
Or perhaps what are the other types of knowledge users that are involved in your community or in your network?
Norman
That's actually a really interesting question. When this started in 2015, the mechanism of it starting was it grew out of an ad hoc committee at the Canadian Pain Society called App Doc, the Academic Pain Directors of Canada. And it's kind of a funny group. It doesn't have a formal standing at CPS, but we would meet every year at CPS, have done so for probably 15 years. It mostly started out as people who were the clinical directors of pain clinics based at universities. Mostly it was us sitting around getting together for dinner and whining about how hard our lives were, how nobody loved us and we had no resources and the great things we could do if only someone would actually pay attention to us. Interestingly enough, out of that group arose a number of significant initiatives.
One of them was the creation of the Specialty of Chronic Pain at the Royal College of Physicians and Surgeons of Canada that was led by Pat Morley Forster, who at the time was the the clinical medical lead for the pain clinic at Western University in Ontario. She put together a team and we had several iterations that led to this, apart from getting together and everybody sharing successes as they came along and examples for how problems were solved or resources were achieved.
When this opportunity came up in 2015, it was actually another member of that group, a medical director at the University of Ottawa (the Ottawa Hospital Pain Clinic), Cathy Smyth, who submitted the initial registration. You have to put a note in saying, we're thinking of doing this. And so Cathy sent this in and we had circulated amongst App Doc, and then we circulated more widely to Canadian Pain Society membership to say, who is interested in this, and what can you contribute? Then an ad hoc process flowed from that. Basically, people demonstrated interest and engagement and activity and helped to write the first letter of intent that went in over the Christmas holiday that year. There was a group of about ten people who made the submission.
I think there were about 60 or 80 groups that made submissions, and then there were 25, or maybe 20 who were invited to submit full applications. And we were one of the 20 invited to submit a full application. And so we then put together a working group. I happened to be fortunate to have admin support at the institute here so I by default became the principal investigator. We hired a grant writer, Dawn Richards, who is also a person with lived experience of pain and has quite a lot of patient consulting kind of experience, as well as is a PhD scientist. She was instrumental in writing the first application. We spent about six months on the phone bringing all the groups together. We focused on trying to meet the requirements of CIHR for breadth of coverage geographically. In fact, it worked well because the pain community in Canada is not a big community, and researchers tend to know each other across the country, especially in their fields, but also bringing in educators and clinicians to fulfill these other requirements and bringing patients on board. And so it really had to do with a combination of interest and inclination and time and ability to respond when we put out a call for input or assistance. We ended up with some key leaders who led the writing of certain subsections of the grant. So I guess you could refer to it as a combination of system and organic development.
Anna
If any researchers wanted to currently join the network, is that a possibility?
Is there room for expansion for any listeners who represent the research perspective to join the network as well?
Norm
Well, there's certainly opportunities to collaborate with the focus shifting from research to knowledge mobilization. In fact, we have knowledge that was generated during CPN that we are setting out in a strategic plan to mobilize. That is, specific pieces of knowledge that have been created or goals that we have for, say, clinical activities we think should be occurring more broadly.
We certainly are open to meeting with people or to working on how knowledge mobilization of their research work can be assisted. We've written quite a lot of letters of support for researchers to indicate how a grant that they're proposing, for example, would meet the the goals and needs of the Chronic Pain Network and CIHR.
One of the things that happened during CPN, partly triggered by CPN and partly triggered by a lot of other advocacy that goes back to about 2008/2009 was the creation and reporting of the Canadian Pain Task Force. They've laid out a national strategy. It's a Health Canada committee commissioned by the health minister at the time, Ginette Petitpas Taylor. She commissioned this task force, which in two and a half years (which was six months ahead of its scheduled mandate), reported back with its national pain strategy, the Action Plan for Pain in Canada. The plan has a series of six sort of overarching recommendations with a lot of subsets of information and goal specific directions. So there are ways that we can support researchers. We don't have funding in particular to disseminate, but we can certainly help people to connect with knowledge pathways for how to disseminate their knowledge best.
Delane
The Patient engagement Committee is also working on actually developing a hub to connect researchers with people's lived experience, to help with engaging people who had experience in the research process. And so that's something that's ongoing. So that may be another way that researchers to get some support from the Chronic Pain Network as well.
Norman
Thank you. That's a very good point. And I overlooked that because some of our goals now are knowledge mobilization. But part of that also includes mobilization of knowledge about how to conduct patient-oriented research. So the processes. We have some online resources that were created. In fact, the Patient Engagement Committee created several podcasts or webinars, videos about what patient-oriented research means. But as Delane said, we also have a mechanism for it, for a researcher who decides that this is a good idea, this is how I want to do it, but I'm not quite sure how to do it. Who can I connect with? Certainly between the Patient-Oriented Research Committee and other members, we can help people develop a good strategy and potentially supply them with patients who are knowledgeable about the research process, who can participate in their work.
Delane
Yeah. And that goes for people with lived experience as well. If they want to become involved in research. We're also here to help as well.
Anna
Something that I find really amazing as a patient-oriented researcher myself, is the fact that it seems like your network was created in all of its activities through separate committees, and they sound like they were very high functioning committees, which isn't always the case. And it's something that people I often hear are worried about as well. They feel as though they have to have a plan and all the answers.
Could you share any tips or tricks or your secret to being able to form these committees that seem to gel?
I know every patient partner I've talked to that's been part of the network has had nothing but great experiences to share with me. So how is it? How do you form these high functioning, happy committees that achieve their goals?
Delane
One thing that I think is really unique to the Chronic Pain Network, which is as you were saying, our secret sauce is at the end of the day people's lived experience and feeling valued and being meaningfully engaged. And that happens across the network. And so I think, although it did take time as new networks come to be, just like any other sort of initiatives. It takes time and it takes learning. And I think, though, the biggest thing is just being open minded and allowing, even though patient engagement and patient-oriented research isn't necessarily brand new anymore, it's still relatively new. And so having an open mind, and that comes from both people's lived experiences, patient partners as well as researchers and clinicians, but really just allowing collaboration and this building of community and expertise to be shared, I think, has really been something that the Chronic Pain Network has really emphasized and helped facilitate, which has really allowed us to be so successful and productive in all of the things that we do.
Norman
I think Delane's got it. It really is an attitude. It's an attitude that has to imbue the entire network, all the participants.And it's funny, I think part of it is it didn't occur to us that we shouldn't do it. Right? I mean, I guess that that's the funny thing. I remember when we first described our co-governance model, where every committee has a co-chair who is a patient partner as well as the so-called academic partner academic chair. They were equivalent. The co-chair for our executive committee, he basically ran the committee. He was responsible for making sure everything happened. And similarly with the other committees and their co-chairs. If a patient spoke up or brought an issue, it really is that thing of taking it seriously.
All of these networks are chronic disease network. So you can't say that there's difference in contact with patients. But I do wonder if the fact that pain seems to have a different sort of complexity to it, it's less well understood for example, than diabetes which is understood as a physiological disease. It focuses around a single hormone, insulin presence or absence, and there are a lot of other things that happen. But I think pain is finding its way. We still don't understand pain. Well, we understand it better than we did 30 or 40 or 50 years ago, but we don't understand it well. And so I think the people who are involved in pain research have a little bit of humility about them. Perhaps that maybe makes them better targets for collaboration with their patients than some other diseases or illnesses where maybe the the hierarchy of knowledge and so on is a bit more clear. I sometimes think the fact that we're kind of finding our way together made the pain research and clinical care and education community a good field for sowing the seeds of patient engagement.
Delane
I'll just add that I think also that that attitude or that culture has also been really infectious towards people outside of the network as well.We've noticed a huge uptake of patient-oriented research and patient engagement and really valuing the lived experience voice with people in the pain community. And that, I think, has really been in part to the Chronic Pain Network and having a place that is showing this attitude in this culture. So I think that's something that's really beautiful that has come out of the Chronic Pain Network and is continuing to grow and influence change in the pain community and field.
Anna
Are there any other key considerations that you've learned about patient engagement and research through your involvement with the network that you'd like to share with our listeners?
Norman
I'll tell you the one thing we haven't talked about is,
Does patient-oriented research cost more?
One of the real problems in research is finding enough research money for any topic. One of the issues we have in the pain research world is that pain has been relatively under-recognized for many years. I think having a federal task force focus on it is part of the process of changing that. But given the magnitude of pain as a problem, it doesn't get the kind of attention to funding pain research that you might anticipate. You can never play the my disease is worse than your disease game in the funding world. It's just pointless. But given the magnitude, you'd think there should be more.
So then when you look at the cost of if you bring patients in, it's essential that they be compensated for the time they spend. I mean, researchers, that's what researchers do for a job is they do research. So they're compensated by their roles or however they are compensated. But when you bring patients in, this is a change from their usual activity. It takes them away from something else. So you have to recognize that a patient who serves on a research committee to help design a study or conduct a study should be compensated for that.
And then the pushback. I've been in meetings where somebody said, well, we'd love to involve patients, but it's too expensive. And I have to admit, my one message there is that it's not. I mean, really, it's often been very hard for us to actually spend the entire budget that we allocate to patient engagement in the research network, because nobody's in it to make money. The compensation that you provide recognizes a contribution. But really, a few committee meetings once a month for a year or something like that is is not going to break anybody's budget. I was at one meeting where I pointed that out to an international group of researchers. You can allocate money, you put it in your budget line. You say, I have to compensate patients for this. You don't say, I'm going to have somebody donate 300 Sprague Dawley mice so I can experiment on them. You say I have to go buy these mice. If patient engagement is part of your work, then you put it in the budget line and it becomes part of the budget.
I think one of the leadership areas that we had in the Chronic Pain Network is that our patient engagement committee actually wrote and published two articles, one on financial compensation and the other on the recognition of contributions in publications. So, how do you first compensate patients for their participation? And secondly, how do you recognize that contribution in the publication? So I would say the the whole budget thing is a chimera. I mean, it's not a real problem in the world of budgeting for research, but you do have to put it in.
Delane
I think that we've talked about a lot of things today. And I think the main thing that I always think of when I think of the Chronic Pain Network specifically, and what we've done with patient engagement, is this emphasis on being open minded and building this community of support. I think that goes in many different ways. Whether it be supporting with a research project, supporting with executive decision making, or even just decision making in the network, and also supporting with developing new resources. There's lots of different ways that we have worked together to really uplift each other.
We recently published a paper on an evaluation that that we did with the Chronic Pain Network, specifically about patient engagement within the network. We found so many lovely things. Again, that idea of building community was really the main idea, and also some things that people might not think of right away in terms of, what bringing people with lived experience together in this national health research network might do. I think it really allowed us as people with lived experience and patient partners increase our confidence. Like I said before, when I came into the network, I knew nothing about patient engagement. I knew nothing about the pain community, besides I wanted to do something, I wanted to give back to the pain community. The Chronic Pain Network has really just been this lovely starting place for me. It continues to be what I refer to as where I grew up in the pain community.Something that we also talked about in the evaluation was that it allows so many opportunities for other things for people with lived experience.So I think that idea goes back to that. That idea of culture and attitude just allows more acceptance of of patient engagement and then gets people more excited about it because they see it in action and they see it working.
Anna
We'll be sure to share that paper as well in our resources so that people can go back to it and read it themselves if they'd like. So in wrapping this episode up, what are some key takeaways about patient engagement that you think today's listeners or viewers should consider applying to their own patient engagement work?
Delane
I can start out. I think having that open mindedness really goes a long way because even for those who have done patient engagement before, there's always something new to learn. And for those who haven't done patient engagement before, it's such a beautiful thing. It really does make an impact on the work that you're doing. And so whether that be research, whether that be clinical work, whether that be education, you can always involve people with lived experience. I think the network has done a really lovely job of just showing how many things can come from doing that.
Norman
I would say that's the key message. It's the Nike message, right? Just do it. But the critical piece is to listen. Listen to what patients are telling you. Also, you should never have to actually say this, but sometimes you do — treat everyone with the same level of respect and all information coming in is valued information. Some of the best conversations that I've had have been when I tried to explain my work to people that didn't know anything about it. So the very naive Preston. What is it that you do? And so when somebody asks a question that sounds very naive, if you actually set out to answer it, it will almost always force you to focus your thinking in a way that you might not have otherwise. So I think I think that's the message. Engage with patients, but also listen to them and think about how you're incorporating their input into the process.
Anna
Thanks, Norm. That was beautiful and truly what patient engagement is all about. I'm not the least bit surprised that the Chronic Pain Network has such a good reputation and seems like such a great organization to be a part of.
Before we wrap, I'd like to remind the listeners to please be sure to check out our website (asperusual.substack.com) for resources from today's episode and interactive transcript 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. For those of you who'd like to contact me, please shoot me an email at anna.asperusual@gmail.com. Thanks so much for tuning in and until next time, let's keep working together to make patient engagement in research the standard or as per usual.
