Editor’s note: During the 2023 North American Pain School (NAPS), five pain researchers participated in the PRF-NAPS 2023 Correspondents program. As preparations are well underway for NAPS 2025, we’re taking a look back at some NAPS highlights and the people who made them possible.
Jennifer Daly-Cyr – a dedicated advocate and patient partner at the Chronic Pain Network in Canada – has experienced undiagnosed, chronic abdominal pain for more than 10 years. She is passionate about sharing her lived experience, as well as her professional background in marketing.
In the interview transcribed below, Daly-Cyr speaks with PRF-NAPS Correspondent Emily Mills about the importance of including those living with pain in research.
At what stage of life were you when your pain began?
At the time I fell ill, I felt like I was living a really big life. I held a director’s position at a major college in Canada and, prior to that, I was a faculty member in the area of marketing and strategic planning. I was also in the process of completing a master’s degree. Personally, I also have a wonderful family and extended family, I’m married to a great guy, I have three great kids and their partners. I also had this big social life then, and I had a passion for climbing mountains in my spare time.
When I fell ill, I had just returned from my second climb of Mount Kilimanjaro. I had run into some temporary pain problems on the mountain. I had had a similar experience a few years earlier when I was at Everest Base Camp, but the pain went away that time. Unfortunately, the pain returned for good in August of 2014. I had hoped I was going to be away from work for just a few days, to see if the pain improved. But then “a few days” became a few days more, and then a few weeks. One thing led to another, and I haven’t been permitted to go back to work since then.
Describe the process of trying to find a diagnosis.
My whole journey has been a search for understanding “why.” There is an element of stigma attached to having long-term pain when you look fine and you don’t know what the cause is. Initially, I thought I was on my way “out” because the pain came on so suddenly, and it was so severe.
Over the course of my journey, I have been examined by a number of specialists. At different times, my physicians (who are amazing people) would say, “It feels very much like it could be this….” I have had umpteen imaging studies and blood tests done, and I have received some injections, for instance, pain blocks. I have had surgeries and all sorts of procedures to see if – by process of elimination – the issue would resolve. And to this day, I continue to have procedures done. However, by now, there have been a lot of potential causes ruled out, thank goodness.
Over the years, I have had really good dialogue with my physicians. Initially, I kept very detailed records of my pain symptoms so that I could try to understand it. I was trying to understand if there was any correlation between one thing and another, because clinicians always ask those sorts of questions. Then, honestly, at a certain point in time, maybe a year into it, I just said, I’ve got to stop doing this because I don’t want my whole focus to be on these spreadsheets.
Have you been able to find any effective treatment, even though your pain condition is undiagnosed?
Primarily, I find that my treatment is about managing the pain. For me, opioids are actually effective. I use them very sparingly, and that has been something I’ve worked really hard at. I had a lot of dialogue with my physicians around the fact that I do not want to be on high dosages – I don’t want to mask the pain; I want to understand what’s going on.
What are your thoughts on the differences between acute and chronic pain? Would you define your pain as chronic?
When I speak with a group of pain researchers, for instance, at the North American Pain School, I will refer to my pain as “chronic” because it has lasted beyond three months. However, my belief is that I don’t actually have chronic pain. I would describe my pain as experiencing frequent, acute pain episodes. My acute episodes are exactly the same specific localized pain, and it doesn’t spread elsewhere. It always has that same character, and it can be up to a 10/10 severity, depending on the day. When it resolves, I can go for days without pain.
At a clinical level, the word “chronic” is not always ideal for the patient. Some perspectives I have heard in the clinical environment are, “Well, it’s chronic now, therefore, what’s the point in going for a treatment?” I am not referring to my existing team of specialists, but I have experienced these perspectives through emergency doctors or through other consults. This is unfortunate, because here is somebody who is really motivated to find a solution, and their regular health professionals agree that there may be a solution.
I think the understanding that there are only those two words – “acute” and “chronic,” one being less than three months and the other being something beyond that – is not as complex as it should be. In my opinion, how a patient gets categorized and the implication that has on treatment are things that require attention.
Since 2018, you have been involved with the Chronic Pain Network and Pain Canada, and then more recently with the Canadian Pain Society, of which you’ve become such a valuable member. What led you to pursue advocacy work?
What led me to it was sheer serendipity. At the pain clinic where I am a patient in Ottawa, I was searching for something to give me some information – if I didn’t know what the cause of my pain was, at least I needed to know more about how to deal with it. So I attended all the workshops I could, and I even pitched an idea for a workshop, because I was being told that there were other people in pain who attended the clinic and didn’t have a diagnosis.
Here is a funny story. At one of the workshops I attended, they made a last-minute change to the room that it was being offered in at the hospital. No one else knew where the room was, so it ended up being just the moderator and myself. We had a great chat, and she told me about all the pain research being done in Canada. I had no idea!
She told me, “There are millions of dollars going towards pain research right now, and they are even getting patients involved in this.” She was specifically referring to the Chronic Pain Network at that point in time. So I responded with, “How do I get involved?”
Fantastic! In what ways did you get involved with the Chronic Pain Network?
From the start, I was on the Patient Engagement Committee, and that was great because I learned how patients were being engaged in research. I had been oblivious to all of it, and I thought, there needs to be more awareness raised around this. Given my previous professional background in marketing and strategic planning, this is always my automatic focus.
So I started talking to people more about this. After a little while, the Knowledge Translation Committee asked me to join their team. As part of this committee, I met amazing researchers and other patient partners, and I learned the importance of a patient’s voice in research. It didn’t matter that all of our conditions were different.
How do you think researchers can better engage patient partners?
That is a very important question. I would suggest that it’s probably incredibly different from one project and one researcher to the next in terms of what the needs are.
Quite often, when I speak with trainees, they will ask me, “When is the right time to engage a patient partner?” My view is: Just start the conversation with a patient. In an ideal world, the conversation should begin at the very beginning of the research project. Sometimes, from the researcher, it could simply be, “This is my research project. I would like to get you involved, but I am not exactly sure how yet….” What I have noticed is that, at least in my own limited experience, there might be questions that I would have for them. For instance, after the researcher describes their project, I may ask whether they have looked into this or that related aspect. Then, the researcher might say, “Well, yes, we did consider this, but this is the reason why we need to focus more narrowly,” or that kind of thing. So the most important thing is to start a dialogue around it.
That said, it can be incredibly effective for a researcher to bring someone in partway through and say, “This is what we’ve done so far. What do you think now? And going forward, can you help with this or that?” I have also been involved in some research projects where the researcher says, “We don’t have time to involve you on the grant proposal, but we’re going to get you involved at this later point.”
These discussions can generate ideas for entirely new research questions. Do you have questions yourself that you would like to see answered in the research context? How do you think we can see this implemented on a practical level, where researchers and people with lived experience (PWLE) are more closely integrated?
Yes, I have been mulling over what I consider to be research questions for some time and have spoken to some individuals about it. In one of his NAPS presentation slides, Dr. Frank Porreca asked, “How can patient partners fill the gap in terms of what is not currently being studied?”
Yes, we can add to the questions or the layers of an existing study. Another important consideration is – What if there are questions that simply have not been addressed yet and are being identified by a patient partner?
One important thing to consider is how do patient partners get connected with researchers? The Strategy for Patient-Oriented Research (SPOR) in Canada does have an opportunity where people can submit their questions. These questions are then evaluated, and the individual may be connected with a researcher as a result. But the next things to consider are: What happens to those research questions? Do they go into a vacuum? As patient partners, we would want to have some connection remain with those questions, going forward.
In Canada, for instance, what sort of registry could be created around that? How do we really integrate, so that all researchers and all grant proposals have a PWLE associated with them? I am not sure what the answers are, but I have been really thinking about it a lot. I have had a few discussions around it, and I think there is a solution; we just need to work on it together.
With the Canadian Pain Society (CPS), you have formed the Persons with Lived Experience Committee, of which you are the vice-chair. What experiences have you had working with people from CPS?
My initial work with CPS was on the Scientific Programming Committee. I had been invited by Loren Martin and Mike Hildebrand to join as a person with lived experience. It was interesting to see the breadth of research happening in Canada. Then, John Pereira became the CPS president in 2022, and he wanted to have people with lived experience more closely integrated. So while there were a number of people already involved in various committees, he wanted a committee focused on further integration. He asked Virginia McIntyre to be the chair of the PWLE Committee, and asked Keith Meldrum and I to join. The three of us call ourselves, at times, the “dynamic trio.” We hardly knew each other beforehand.
The question was: How do we go about further integrating PWLE in CPS? The three of us were talking about it and decided that in order to inform the policies and bylaws for this newly founded committee, we should understand the perspectives of the current people with lived experience on committees, of the chairs, co-chairs, of the leadership, of the board members, of any other key stakeholders working with the CPS. So we undertook interviews with each and every one of them throughout the year.
I think it’s great that the skills you’ve accumulated and excelled at previously in the area of marketing and strategic planning are really being put into use here – just in a different way.
Yes, you’re right. Well, in fact, this research has been very much in line with my career in terms of marketing research. It has involved a lot of interviews with people – learning and interpreting what they have said.
And that is a really important point – each and every one of the people with lived experience bring not only their personal pain experience, but they bring everything that I refer to as being in their “backpacks.” They bring their family, their belief system, their values, their work experience and other volunteer experience. Everything comes with them when they engage in research as a patient partner.
Emily Mills is an early-career investigator previously based at the Krembil Brain Institute, University Health Network in Toronto, Canada.
Since this interview was conducted Jennifer has participated in the following:
She is the executive committee co-chair for the Chronic Pain Network – Knowledge Mobilization and Implementation Science (CPN-KMIS), and is a board member for the newly founded Pain Ontario. She is also the first community representative for the University of Ottawa, School of Medicine, Postgraduate Education Executive Committee.
She gave the opening remarks, Setting the Scene – Living with Chronic Pain in Canada, at the National Congress on Pain, a collaboration with the Canadian Pain Society, in April 2024.
In addition, she has spoken at:
- The Canadian Pain Society, National Pain Rounds (NPR)
- The Research Canada Parliamentary Health Research Caucus Event on Chronic Pain
- Symposia at The Canadian Pain Society Annual Scientific Meeting 2024
- Dalhousie University, School of Physiotherapy
- The Oncology Graduate Students, Faculty of Medicine, Université Laval
- The Ottawa Pain Café Scientifique at Carleton University
- The Clinical Trials Alberta/SPOR 2023 NorthWest Collaborative Forum
Related Reading:
Chronic Pain Network
Pain Canada
Canadian Pain Society
CIHR Strategy for Patient-Oriented Research (SPOR)