This article will discuss our experience of going through the University of Calgary PaCER Certificate Program in January 2019, generously sponsored by IMAGINE. Our Team, IBD National (also affectionately called The MOB (standing for Manitoba, Ontario, British Columbia), consisted of 5 people: Kim Daley, Sunny Loo, Jenna Rines, Kwestan Safari, and Deirdre Walsh (our PaCER mentor). As part of the Program, we completed a research study delving into IBD patients’ relationship with food. We will give a brief summary of each member below.
Kim has been involved with Patient Oriented Research for the past 5 years. She is a member of the University of Manitoba/Health Science Centre IBD Patient Advisory Committee, and a past board member of the Winnipeg Ostomy Association. Being a member of the Winnipeg Ostomy Association gave her the rewarding experience of supporting IBD patients post-surgery. She is currently a patient research partner on IMAGINE-SPOR which has opened up many other opportunities to be involved in an advisory role. She was eager to take the PaCER course to learn patient-led qualitative research to increase her knowledge, experience, and abilities. She has had Crohn’s disease for 25 years, is a wife, a mom to 3 young children and is off work from the Winnipeg 911 Emergency Call Centre awaiting her fourth surgery.
Sunny is a retired pharmacist with almost 40 years helping patients through technologies. In 2008, he became a patient after being diagnosed with a rare form of vasculitis, Wegener’s Granulomatosis, an autoimmune disease affecting small blood vessels. Through his recovery and living with his chronic illness, he became interested in research and the importance of partnering patients into the entirety of the research process. Sunny is a volunteer member of the B.C. SUPPORT Unit Patient Council and has partnered with several patient oriented research engagements. Sunny currently resides in Sooke, BC with his wife and three Brussels Griffons.
Jenna is a social worker, educator, and consultant supporting patients dealing with the emotional impact of living with chronic illness. She also works with healthcare providers to develop practical resources and navigation tools for patients. She has lived with Crohn’s Disease since 2010 and is based in Ontario. Engaging in qualitative research has always been a professional interest for Jenna, so she was excited to be a part of the PaCER program and use the skills she has gained as both a healthcare professional and a patient.
Kwestan lives in B.C where she is currently a master’s student in experimental medicine and investigating the mechanisms of intestinal fibrosis in Crohn’s disease. She was diagnosed with ulcerative colitis in 2015. Since her diagnosis she has been volunteering with Crohn’s and Colitis Canada and looking for different ways to dedicate her time and give back to the IBD community. The PaCER internship allowed her to contribute to qualitative research and uncover and bring to attention the concerns of individuals living with IBD.
Deirdre was the mentor for the MOB as they engaged with the PaCER program to develop qualitative research skills that built on their experiences as patients. She was an intern in the program in 2017/18 and completed a research protocol and report with a small team, also in the area of IBD. She has had an interesting career focused on patient behavioural health. In addition to patient-to-patient research she has developed patient programs and wellness events for pharma and consumer product companies, and is a wellness coach and mindfulness teacher. She lives in the GTA with her family.
What was it like to be a patient leading a research project?
As patients, we are accustomed to being the subjects of research. Having the opportunity to be engaged as a researcher in a peer to peer study was innovative, exciting, and a challenge. Being a team that had a significant proportion of people with IBD, our work was really grounded in our own experiences when it came to food and IBD. Investigating the psychosocial challenges that people with IBD have when it comes to managing their nutrition and food was very interesting, and it was an excellent learning experience to hear the stories from fellow patients and working with them to determine what is important to them to improve their relationship with food. While hearing the patient stories as patients ourselves, we were not only able to relate to some of the stories we heard but also growing in our own understanding of our disease.
Given that our team is made up of people who have the unique perspective of knowing what it’s like to be both patients and healthcare providers/researchers, we understand the importance of reputable information and sources, so it feels good to contribute our findings to the research and health care communities. It was really empowering to be able to lead and co-design a research study that was born entirely from the concerns of patients with IBD. Going through the PaCER protocol, we felt confident the whole time that our results were rooted in what participants were telling us about their experiences, which is unique and of vital importance to make meaningful changes to our health care system.
The bond that was formed with our National IBD Team was remarkable. Being able to connect through our own personal stories as well as through relating to the participant stories was an experience unlike any other. We never imagined that taking this course would leave us with such lasting relationships, as well as a wonderful feeling of being able to give back to IBD community.
What challenges did you experience and how did you navigate them?
We encountered a number of challenges as a result of our researchers and our IBD patients all participating remotely from various locations across Canada. We had to develop processes based upon available technologies that was readily available to our participants, easy to use, supported our research parameters, and meet confidentiality and ethics requirements. Slow/poor internet speeds both during our weekly meetings as a research group but also during our focus groups was another thing we had to contend with. We allowed for extra time, were attentive to any participants dropping out due to internet challenges, and offered tips to help them lower bandwidth (i.e. turning off video or calling in on the conference line). The differences in time zone was also a bit of a challenge to schedule meetings and focus groups at times, but we found a way to make it work!
Given each of our team members’ different backgrounds, skills, and strengths, we all found it particularly interesting learning about each other’s biases and helping each other minimize the effects of these in the research process. There was also a need to be flexible with weekly meeting times as all of us have different responsibilities outside of PaCER that required attention (i.e. school, work, parenting, volunteering, and more!).
Overall, we feel our team met these challenges through frequent and clear communication, flexibility, and support for each other.
What did you learn going through the research process?
We went through the entire continuum of the research process as a team, which was a big undertaking but invaluable learning experience. This learning included conducting thorough literature searches, knowing and carrying out the intricate details required to plan and write an ethics proposal, as well as conducting our own focus groups. We also learned and worked through the various stages of data analysis, which included how to conduct iterative data analysis individually, as well as in our group. It was interesting to experience the benefits of having multiple ‘observers’ throughout the research process, which to us clearly demonstrated the benefits of team-based research.
We learned the importance of data security, using encrypted end to end apps for messaging as a team as well as hosting the focus groups and interviews. In addition, a portion of the course was learning how to recognize your own bias and see others’ biases. We learned the importance of knowing one’s bias before starting research.
We gained a deeper understanding of the power of patient stories, and the valuable insight that is gained when patients speak at a peer-to-peer level. We also learned more about the shortcomings of our provincial health care systems when it came to addressing the clinical, emotional, and psychosocial needs of patients with IBD. Each patient truly had their own unique journey and unique combination of supports that was needed, and oftentimes not received.
How much time did you commit to this research project and PaCER certification?
Taking part in the PaCER certification program was exciting as it gave us the unique opportunity to become a recognized patient researcher. However, it was certainly a challenge at times as it required a commitment to complete not only an academic course load, but also to conduct a-peer-to peer research study at the same time. The program is definitely intensive and time demanding.
Our team first met in January 2019 during a week-long intensive learning session where we learned the very basics of PaCER and interviewing techniques. This was our first opportunity to bond as a team, which was the foundation for the working relationship that was further formed throughout the next year. The foundation of our learning was through participating in monthly 3-hour webinars, where we met on the first Saturday of every month. On top of this, we met online approximately 1-2 times a week to receive assignment information from our mentor, discuss our research project plans, then met again to go over our assignment. Our assignments often took several days to complete. We handed in our assignments via Dropbox to our mentor.
Once the bulk of the learning was completed, we could then start to conduct our research. During this time, we started to meet more frequently as needed, as there was a lot to discuss and arrange in terms of our ethics application, coordinating for focus groups, and ensuring our technology and logistics were in place for our participants. After conducting individual interviews and 3 focus groups as a team, we could then focus on data analysis. We did this individually, as well as in our group to ensure our analysis was robust and not affected by each others’ biases. The final step of completing the course was to hand in first an individual report that included all of our data and findings, as well as a combined team report. This was completed at the end of February 2020.
What advice do you have to patients who would like to get engaged in health research?
Having patients engaged as co-leads in health research is a relatively new, and in some way foreign, idea to many academic and health researchers. As a result, patients who are interested in getting involved in research need to be innovative and driven when trying to collaborate with researchers, remaining grounded in the importance and intention of patient-oriented research and its positive impact on our healthcare system. Patients must keep in mind of the importance of remaining grounded in good scientific methodology in order to meet the scrutiny of ethics and academic peer review, which is why learning more about research (e.g. through a course like PaCER) is often important if you want to get involved in co-designing projects.
If learning about research methodology isn’t exciting to you, but you still want to contribute to research and healthcare change as a whole, perhaps being a patient representative or being a research participant is more up your alley; if this is the case take a look at the IMAGINE website as there are always opportunities available. Participating in team-based research as we did allowed us to form meaningful relationships with our fellow team members. Once our research was completed, our team is still meeting once every few weeks to work together on our research initiatives and planning future opportunities together.
Can you tell us about your results?
We are as eager to share our results as you are to read them! We are working hard to publish our results in a peer-reviewed journal, so unfortunately, we are not able to share our results at this time. We will aim to share our results widely once we have achieved publication, which will include our participants, IMAGINE, and the IBD community. So stay tuned!
We would like to take this opportunity to thank all of those who have helped us in our learning and research process. This includes our sponsors at IMAGINE who enabled us to take this certificate and are helping us through the process of disseminating our results. We would like to thank our mentors Deirdre Walsh and Marlyn Gill for their experience, insights, and guidance in our research process. We also want to acknowledge the support of the PaCER Teaching Team, as well as those individuals who provided support in reviewing and editing our reports. And last, but not least, we would like to thank our participants and IBD community members who contributed to our research. We would not have been able to learn and grow as researchers without you, and we are very excited about our results based on your experience. Thank you all so very much!