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Bringing the Voice of Lived Experience to the Fore: A Conversation with Virginia McIntyre

4 November 2022

PRF Interviews


Editor’s note: The North American Pain School (NAPS) took place 19-24 June 2022 in Montebello, Québec City, Canada. NAPS – an educational initiative of the International Association for the Study of Pain (IASP) and  Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks (ACTTION), and presented by the  Quebec Pain Research Network (QPRN) – brings together leading experts in pain research and management to provide trainees with scientific education, professional development, and networking experiences. This year’s theme was, “Controversies in Pain Research.” Five of the trainees were also selected to serve as PRF-NAPS Correspondents, who provided firsthand reporting from the event, including interviews with NAPS’ Visiting Faculty members and Patient Partners, summaries of scientific sessions, and coverage on social media. 


Virginia McIntyre – a Patient Partner – is the president of the People in Pain Network and a facilitator of several pain self-management education/support groups. Here, Virginia speaks with PRF-NAPS Correspondent Don Daniel Ocay, PhD, a postdoctoral fellow at Boston Children’s Hospital, US, to discuss her journey in the field of pain research, her mission to bring the voice of lived experience to the fore, and much more. Below is an edited transcript of their conversation.


Can you tell me a little about yourself and your lived experience of pain?


I live with chronic pain. I've been living with chronic pain since 2009. After shoulder surgery, I developed this pain in my back. I've got myofascial pain, allodynia, and recently developed trigeminal nerve pain. Besides a rough journey at the beginning, it took years to get the support I needed, but when I did, I was able to get help from pain physicians who had the knowledge. I receive treatments now for my pain. I combine medications, topical creams, and most importantly pain self-manage so I am able to do the things I want.


When did you learn about the term “Patient Partner?”


I went to my first pain conference in 2017 – the Canadian Pain Society (CPS) conference in Halifax, Canada – and they had a workshop about sharing your stories, which I attended. This prompted me to share my story, write my story. The same year there was a call-out from the MSSU (Maritime SPOR SUPPORT Unit) looking for Patient Partners to participate in several round table discussions. It was a mix of clinicians, patient advisors, and policymakers that came together to decide research topics. I put my name in and submitted a little bit of my history. I was then matched at a table around Health Care Workplace Injury compensation. There was no follow-up afterwards. It was just to help them develop topics in each area. That was my first touch as a Patient Partner.


From there, I worked with some local research groups, and I also attended the Canadian Anesthesia Research Priority Setting event through the James Lind Alliance. We went to Toronto, they brought patients and physicians together, and we spent a whole day deciding the top 10 priorities for research topics (McKeen et al., 2020). It was an amazing day.


Shortly after, I made a connection with a researcher in Halifax. The Department of Anesthesia, Pain Management & Perioperative Medicine at Dalhousie University was looking for Patient Partners, and I was invited. My role was to help compile interview questions and to also participate in the interviews. I wasn't going to be a “Patient Partner.” I was helping them choose their Patient Partners as a Patient Partner. I was also invited to join a local research project studying electronic medical record trends in opioid prescribing, which I'm still on. Now, I'm also involved with a working group at McGill University [Montreal, Canada] and a few other projects.


Was there any hesitancy before becoming involved as a Patient Partner?


There wasn't much hesitancy because I knew this work was important, but there was an uncomfortableness going into the rooms for the first time as a Patient Partner – especially around understanding my role, knowing what to do. It can be intimidating. There are decisions to make, especially when attending meetings like I referenced in Toronto with the James Lind Alliance – I didn't know any other Patient Partners then, so it was more of an uncomfortableness than a hesitancy.


I've had to find my own way. There wasn't as much support when I started as a Patient Partner as there is now. Now, there are available resources and support, and the Canadian Institutes of Health Research has developed webinars for Patient Partners. I was lucky that I quickly developed a network of people – clinicians, researchers, and Patient Partners – that I can reach out to, ask questions, and get feedback on projects I am involved in. I have, over the years, developed a network which is very beneficial. People that I can trust.


You are the president of the People in Pain Network. Can you tell me a little bit more about that?


The People in Pain Network is a nonprofit, grassroots organization that develops peer support groups with a balance of education and support. As the president and executive director, I facilitate support groups, help develop new support groups, provide training for peer leaders, coordinate presenters for meetings, and maintain the organization. I am happy to share that I am in the midst of developing a curriculum resource for our leaders, so they have materials for their groups. I am fortunate to have a really strong and caring team.


And you’re now also involved in the people with lived experience (PWLE) committee of the CPS. How do you feel about that?


I've been asked to take the lead on the development of this new CPS-PLWE committee. Currently, we are small but mighty. My vision is to have a person with lived experience within each committee and then have us all come back to the CPS-PWLE committee to help support each other. I don't want a committee that’s a silo. When [CPS is] doing an event, a discussion table, webinar, or any initiative, my vision is that the first thing they do (if they don't have a Patient Partner) is they seek advice or input from the PWLE committee. In order to know what people living with pain need, you need to include us in all discussions. This PLWE committee is in its infancy stages and developing, and there's much more to watch for.


I give a lot of credit to the commitment of the new president of CPS [John Xavier Pereira, MD, CM, CCFP], who on 14 May 2022, as the president-elect, announced that there would be greater inclusivity of people with lived experience in the CPS. This was just the beginning. I think that it also takes great leadership to know when to have faith in another person to take the lead, and I continue to provide feedback and receive input. I think this says a lot for what's happening within CPS and the awareness of the expertise in our role as Patient Partners.


For those organizations that don't have Patient Partners involved, what advice would you give them, or what advice would you give Patient Partners to approach organizations?


I guess there are a couple of things. I think those [organizations] who don't have us [Patient Partners] – the question is, “Why don't they?” Is it because they don't know how to recruit PWLE, or is it because they don't know how to work with us? If you don't know how to work with us, or are fearful that we're going to come in and belittle things they do, then we need to open the doors a little more and open the conversation, since we are there to support their great work.


We're there to make what you do better, and we may be able to help you find the right Patient Partner who is a match for your research. I think it's a learning experience for both parties. I think every organization should have somebody – I would say at least two. I think Patient Partners, especially if they're new, are stronger in pairs because it can be hard at the beginning. Not so much for me now, but it was, and sometimes still is. Even here at NAPS, when I come in here, you're all on [similar] career paths. Different from me, but I am grateful this group is extremely welcoming; this is not the case everywhere.


If you are interested in becoming a Patient Partner, reach out to organizations or other Patient Partners and share interest. You never know where it will lead.


As researchers, welcome your Patient Partners. Some groups aren't welcoming. Providing the Patient Partners with someone to connect with is important. Also, when we walk through the doors, try saying, "Good morning. Hello.” This builds connections and is welcoming. If the Patient Partner is having difficulty with something, they should have a person to talk to.


Do you have any advice for young researchers on how to seek out help from Patient Partners?


Reach out to organizations and other Patient Partners. But you may want to know some of us do receive many emails with these requests. I get many from people looking for Patient Partners. Please be aware that this takes a huge amount of my time to prepare callouts seeking Patient Partners, even if only for surveys and/or interviews. Be mindful and grateful for our time, too. All my time is on a volunteer basis, as it is for most of us.


I think there's more people out there who want to help and be Patient Partners, but it's finding them and connecting them with people that’s the hardest. We need to continue to engage Patient Partners and welcome them with open arms.


In regard to the different steps of research, do you see a place where Patient Partners should be more involved?


Patient Partners need to be engaged in all steps of research – from the time the pen hits the paper – and all steps are equally as important. It does not have to be the same Patient Partners throughout the project. I think the biggest “miss” many projects have with Patient Partners is that we are not often a part of the grant writing process.


Researchers need to share what has been done regarding projects and ask questions to invite input like, “What are your thoughts? Am I missing something?" I was invited to be a grant peer reviewer in 2020 with Building Research for Integrated Primary Healthcare (BRIC). I read four grant submissions and not one had a Patient Partner included.


Researchers need to have a person with lived experience to consult with, and seek their input throughout the grant writing process and research study.


Is there anything else you wanted to mention?


Yes, I would like to share about Pain Canada. I have been invited to be on their National Advisory Committee. They are providing resources for patients, advocating for federal pain strategy, and much more. We need to keep an eye on their work, as this national collaboration is providing hope and already making a difference. One way is with their conference, “Putting the Pieces Together," a conference for people living with pain by people living with pain.


Don Daniel Ocay, PhD, is a postdoctoral fellow at Boston’s Children Hospital, US. You can follow him on Twitter – @DonOcay

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