S3E1 transcript - From patient to patient researcher
Building capacity with the SPOR IMAGINE Network
Overview
In this episode of asPERusual, host Anna Chudyk sits down with Aida Fernandes, Sandra Zelinsky, and Dr. Deborah Marshall from the Inflammation, Microbiome and Alimentation Gastrointestinal and Neuropsychiatric effects (IMAGINE) network to discuss the work they have been doing at IMAGINE, by investigating the role of patient partners in research. They took a deeper dive into the following key areas:
Patient research partner involvement: In the research process alongside clinical researchers, as well as in participant recruitment, involvement, and retention.
The Patient And Community Engagement Research (PaCER) program: a year long opportunity for patient partners to work in research with the goal of capacity building and research skill development.
Digital storytelling facilitation: reaching beyond traditional academic research in order to empower patients in sharing their stories with the goal of knowledge translation and education
Other areas of interest from today’s episode include:
The importance of capacity and relationship building
The role of SPOR support units
Some challenges in publishing patient engagement processes within research paper publications
Tools and methods used to study patient engagement
Read on to find out more!
Meet our guests
Aida Fernandes
Aida Fernandes is the current Executive Director of the IMAGINE Network – a patient-oriented research initiative in gastrointestinal diseases. Aida has over 15 years of experience in research administration and strategic partnerships in the health charitable sector. Aida was the Vice-President of Research & Patient Programs at Crohn’s and Colitis Canada (CCC) where she oversaw the organization’s research, patient education and advocacy programs for the Canadian IBD community. Prior to her time at CCC, Aida worked at Cystic Fibrosis Canada in several different capacities, including Manager, Chapter Relations; Director, Volunteer & Personnel Resources; and Director, Medical/Scientific and Community Programs.
Aida also has served on a number of governing bodies in the voluntary health sector including: Public Health Agency of Canada’s Respiratory Diseases Surveillance Advisory Committee, HealthPartners Board of Directors, Health Charities’ Coalition of Canada Research Committee, Canadian Genetics Coalition, CIHR’s Institute of Infection and Immunity Institute Advisory Board, and the Canadian Blood Services’ National Liaison Committee.
Aida holds a bachelor’s degree in Human Biology from the University of Toronto and a Master of Business Administration in Non-Profit Management & Leadership from York University’s Schulich School of Business.
Sandra Zelinsky
Sandra Zelinsky is the Co-Lead with Dr. Deborah Marshall, for the IMAGINE SPOR Patient Engagement Sub-Committee. She has been working as a patient engagement researcher for the past 7 years, is a graduate of the Patient and Community Engagement Research program at the University of Calgary and is passionate about bringing the collective patient voice to health research and healthcare. She is also currently working as the Lead Patient Research Partner for the Alberta SPOR SUPPORT Unit, Patient Engagement Platform and is the Project Lead for the IBD Partnerships project. She has been living with Crohn’s disease for 27 years and it is her lived experience that motivates her to work in patient-oriented research.
Dr. Deborah Marshall
Dr. Deborah Marshall is a health economist and health services researcher leading a programme of applied research using patient preferences, patient engagement and simulation modelling methods.
Dr. Marshall leads the health economics, socioeconomic benefits, patient preferences and patient engagement activities for several national and international research programmes (funded by CIHR and/or Genome Canada) in precision health and patient-oriented research to develop health economic tools and approaches to evaluate outcomes: 1) UCAN CAN-DU (Understanding Childhood Arthritis Network Canada-Netherlands) and 2) UCAN CURE (Precision Decisions for Childhood Arthritis personalized medicine networks in childhood arthritis combining genomic techniques, machine learning methods and simulation modelling to predict response to treatment and its associated health outcomes and economic impact; 3) SOLVE Care4Rare Canada – harnessing multi-omics to deliver innovative diagnostic care for rare genetic diseases; 4) TIGeR (Translational Implementation of Genomics for Rare diseases), partnership with Medical Genetics and Alberta Provincial Laboratory for the clinical application of genome wide sequencing; and 5) IMAGINEStrategy for Patient Oriented Research (SPOR) Chronic Disease Network (Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects, CIHR SPOR) on inflammatory bowel disease and the microbiome. 6) OCEC (One Child Every Child) – Dr. Marshall is leading the Impact, Evaluation and Knowledge Mobilization Cross-cutting Accelerator of this national child health and wellness research initiative.
Deborah is the Principal Applicant of the CIHR Health Systems Impact Fellowship National Training Program – “Enhancing a Community of Practice for the Health System Impact Fellowship Program: Advancing Capacity for Sustainable & Patient-Centered Learning Health Systems across Canada” to create a community of practice towards achieving high-performing, patient-centered learning health systems across Canada. In addition, she is the former chair of both the Arthur J.E. Child Chair of Rheumatology Outcomes Research; and Canada Research Chair, Health Services and Systems Research (2008 – 2018). Deborah also holds various memberships in University of Calgary and Alberta Health Services: 1) Alberta Children’s Hospital Research Institute (ACHRI) Member as well as Scientific Director of Research and Partnership Evaluation and Impact; 2)O’Brien Institute of Public Health Member; 3) McCaig Institute of Bone and Joint Health Member; 4) Senior Scientist at Arthritis Research Canada.
She is a Founding Member of the Global Economics and Evaluation of Clinical Genomics Sequencing Working Group (GEECS). Deborah is also a founding co-investigator of the innovative Patient and Community Engagement Research (PaCER) programme at the University of Calgary which trains patients to design and conduct health research, using specific adapted methods of qualitative inquiry. She is an active member of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) as the Past President of the Board of Directors, the Chair of the Dynamic Simulation Modeling Applications in Health Care Delivery Research Task Force and as a member of the Patient Preferences Special Interest Group, the Optimization Methods Task Force and co-author of related ISPOR Task Force Reports. She has also served as a member of the Board of Directors for Health Technology Assessment International (HTAi) and is a member of the HTAi Patient Preferences Working Group. She was co-chair of the Scientific Research Committee and Board of Directors of the Arthritis Alliance of Canada (AAC), and is a member of the Scientific Advisory Committee of the Alberta PROMs & EQ-5D Research & Support Unit (APERSU).
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of Contents
Capacity building and the importance of relationships in research
The Patient and Community Engagement Research (PaCER) program
Challenges in publishing patient engagement information within research papers
Resources
All of the resources below are free for everyone to read:
Inflammation, Microbiome and Alimentation Gastrointestinal and Neuropsychiatric effects (IMAGINE) website
Patient and Community Engagement Research Program at the University of Calgary (PaCER program)
IMAGINE’s Patient digital stories and the digital storytelling webinar
Transcript
Anna
Hi everyone, thanks for tuning in to the first episode of season three of asPERusual - a podcast for practical patient engagement. My name is Anna Chudyk, and I am your host. Before I launch into our episode, I’m going to start with 2 housekeeping items.
First off, thanks to the important suggestion of listener Lisa Ridgway from Victoria BC, every episode is now going to include an acknowledgement of the lands on which the podcast’s home is held. Specifically, University of Manitoba campuses are located on the original lands of the Anishinaabeg, Ininiwak, Anisininewuk, Dakota Oyate and Dene Peoples, and on the National Homeland of the Red River Métis. I, a first generation immigrant from Poland, am very grateful to be residing on these bountiful lands, and at the same time am very aware that they wear stolen from these Peoples through broken treaties, broken promises, and outright lies and cruelty. I commit myself to continuing to educate myself and others about this horrible truth, as one of many steps towards Truth and Reconciliation, and encourage you to do the same.
Secondly, I want to thank you all (and especially the first two episodes’ guests) for your patience with the delayed release of Season 3. As regular listeners know, this podcast is a labour of love that I do off the side of my desk. The last few months have been filled with personal matters that have preoccupied a lot of my free time and emotional energy that I would otherwise be spending on this. But it’s all good, we’re here now, and the only constant is change… including this current season’s over-arching engagement topic!
In our previous season, asPERusual focused on raising awareness of entities that are funded by the Strategy for Patient Oriented Research, or SPOR for short. In case you're unfamiliar, SPOR is a national coalition that was created by Canada's major public funder of health research, the Canadian Institutes of Health Research, referred to as CIHR, to champion and support research that focuses on patient and public identified priorities and outcomes, and engages patients and the public as members of the research team. Patients and the public who engaged in this research team member capacity are often referred to as patient partners or persons with lived experience. Well, we're going to kick off this new season by featuring some of the SPOR funded entities that we did not cover in season two, before switching gears to focus on engagement of youth and families. So sit back, put your critical thinking cap on and send some positive vibes to today's guests Sandra Zelinsky, Deborah Marshall and Aida Fernandes from the Inflammation, Microbiome and Alimentation Gastrointestinal and Neuropsychiatric effects, but don't worry, they've abbreviated it to IMAGINE SPOR network. As you'll hear more about shortly, this network's mission is to transform the management of inflammatory bowel disease, referred to as IBD and irritable bowel syndrome, referred to as IBS, and mental health issues associated with these disorders. Thank you all for coming on and helping me kick off season three.
Why don't we begin by having you tell me a little bit about yourselves and who you are, relative to IMAGINE.
Aida
Thank you Anna, my name is Aida Fernandes, and I'm the executive director for the IMAGINE Network. I'm based in Toronto, but our two co-leads for the network are based out of University of Calgary, and that's Dr. Deborah Marshall, who's also here today, and Doctor Paul Moayyedi, based out of McMaster University in Hamilton.
Sandra
Hi, thanks so much for inviting us to asPERusual, I'm really happy to be here. My name is Sandra Zielinski. I'm a graduate of the Patient and Community Engagement Research Program at the University of Calgary. I graduated in 2014, and this program was really what led me to get involved in the patient engagement or patient oriented research space. I've been doing this for a little over ten years. I am the co-lead patient engagement researcher for the Patient Engagement subcommittee with Dr. Deborah Marshall at IMAGINE. I also work as a lead patient researcher for the Alberta SPOR Support Unit patient engagement team. I have conducted and been a part of many research studies over the years, both patient led as well as working together on multidisciplinary research teams, and have had many amazing opportunities to present work both nationally and internationally and as a co-author on publications. I have a definite interest in qualitative research and in storytelling, so I have received my digital storytelling facilitator certification through the Story Center in the US, and do some of that work as well in health research. So thank you.
Deborah
Great, and I guess that leaves me, I'm Deborah Marshall, thank you Anna for inviting us to participate today. And thanks for listening to those who are listening to this. I'm a health services researcher and health economist based at the University of Calgary, and as Aida mentioned, I am the co-principal investigator for the overall IMAGINE network which includes 17 sites across Canada. I also share a role with Sandra co-leading the patient engagement program within IMAGINE, and it's really been a privilege and a joy because there's always new ideas and we have lots of opportunities to do a range of different kind of research with our partners in IMAGINE as well as other programs that I'm involved with. At IMAGINE I think we have a nice breadth of examples that we can share with you today to explore all of the ideas about how one can engage. We also want to think about what are the tips and and the ideas about trying to make patient engagement in research as fruitful, engaging, and rewarding for all partners, including patients and researchers and also sharing that with our communities to try to improve outcomes for patients.
Anna
Thanks so much for coming on. I've been so excited to actually meet you all, albeit virtually, and I can't wait to explore all of the different engagement initiatives within IMAGINE. But before we do that, why don't we back the truck up a little bit and start by helping the listeners get a better understanding of what IMAGINE is.
What is IMAGINE and its history, how it came to be, as well as its missions and goals?
Aida
Sure. So IMAGINE came about through the Strategy for Patient Oriented Research call for applications for chronic disease networks. And I think what really was focused in our network was trying to understand the brain gut connection and obviously that plays a very important part in two particular gastrointestinal diseases, inflammatory bowel disease, IBD and irritable bowel syndrome, IBS. So in those two diseases, they're slightly different in their patient outcomes and symptoms. They do have this sort of similar interaction and association between the brain and the gut. This particular network (IMAGINE) wanted to understand better those associations between the microbiome, so all the bacteria that live in your gut, and how they're impacted and change based on your diet and other lifestyle changes and how that impacts the disease outcome for IBD and IBS patients with the goal of coming up with better treatment options for persons living with these diseases. So that was really the intent. And again, what I think was quite special is that we heard from the patient community that the diet is really unexplored right now in the IBD and IBS field. And a lot of the treatment options right now are focused on medication and surgeries and patients were really encouraging further exploration around the mind, gut and dietary influences. And so the IMAGINE network was set up to try to better understand those associations, so we put in a proposal and we're excited that we were funded in the first round and second round of the CIHR application process. And we're continuing with a number of our research projects that are really aiming to help understand that connection between the brain and gut, and also pursuing alternative treatment options that could hopefully be implemented to improve health outcomes for patients living with IBD and IBS.
Anna
Thank you for that. Something that I found fascinating in season two was that although most of the SPOR entities that we talk to considered themselves networks, they all had distinct ways that they went about and structured themselves to try to reach their mission or their goals.
What are the main ways in which you pursue the missions that you’ve set out to achieve as the network?
Aida
That's a great question. So I think in our original plan, our network was primarily focused around one large research study. And that's what we call the MAGIC study. It's the mind and gut interactions cohort, and the point of this particular observational study was to understand those brain gut connections, and the the way of doing that was involving a number of centers across the country, 17 as Deborah mentioned at our peak period, to help recruit subjects for this observational research study. Our goal was to recruit 8000 Canadians, and we've gotten awfully close. Around 7600 subjects were recruited in this particular research project. We had this one sort of landmark study that really was national in scope, involved a number of centers across the country, and recruited subjects from across the country. At the same time, we also realized we wanted to explore and pursue other clinical studies that might have a more focused approach for new therapies. And so there were a number of sub studies that were also established within the IMAGINE network that might be led by one center, or perhaps only 1 or 2 of our centers across the country. These tended to be a little bit more targeted on intervening to try to change the course of IBD or IBS. We have really interesting projects going on, such as:
fecal transplantation to try to manipulate the microbiome
cognitive behaviour therapy to improve mental health in patients living with IBD.
These were a little bit more interventional, focused, and limited to a number of sites to really see if they have some proof of principle that would then encourage further research and investment in those areas. Our particular approach is that there was sort of one overarching main study with a number of smaller studies, which at this point were, I think, approaching 30 or 35 different sub studies. They are all pursuing different lines of questioning and research questions for the network that are all lined up in our overall goal of trying to transform the lives of people living with IBD and IBS.
Deborah
I'll just compliment some of the things Aida was saying about the network. I think because of the unique matching feature of SPOR, it really did enable in these 30 or so sub-studies for us to do some deep dives in particularly interesting aspects. It was really helpful because in our governance structure we set up for all of the committees and all of the main theme projects to include patients so that those voices would be present in the deliberations of those committees and also in planning and executing the research. We also have about 40 patient partners or patient research partners, which is the terminology we use in IMAGINE, and we have a variety of opportunities for them, ranging from “what do you think about this poster,” and getting input on things, to like “it's really hard to recruit that many patients, what should we do”. I don't think Aida mentioned that not only was this recruiting patients at baseline, and there's over 7500 of them across Canada, but the idea was also we needed to take blood, stool, and urine samples for four years sequentially. So that is a really hard task for all of you out there who've done research. Recruitment is hard enough in and of itself, even if it's a short and simple survey. The IMAGINE Recruitment ask, quite honestly, was pretty heavy, including:
completing surveys,
looking at health related quality of life,
completing surveys about mental health,
and providing physical samples, as I said, blood, stool, and urine
four times because it was a repeated four year cycle longitudinally. So one of the things our patient research partners helped us with, and we had about ten research partners from IMAGINE, they helped us with interviewing some of our IMAGINE participants to say, “hey, how can we not only recruit but also retain people” in this study that is, quite frankly, is asking a lot from our participants. Some of the key things they found to be really important were:
To make it convenient for patients,
To have good communications with them,
To have a good experience when they come into the clinic, when they're getting samples,
Excellent dialogue both by email and in person,
Compensating them for their time and effort.
So that's one way, as an example, that we were able to partner with patients to help us think about how to achieve this pretty lofty goal.
Anna
That's really fascinating. I also checked out your website and I really admired both the depth of the projects, and as you were saying, Deborah, how you engaged patient partners and helping provide feedback. And I wonder who was responsible for the really witty little poop thing that says we want your poop? It made me definitely chuckle every time I looked at it, I thought that was really genius.
So, it sounds like patient partners are truly research partners within your studies, helping plan the decision making, and guide the study along the way. So that's one way that patient partners are involved. Then what are some other ways as well, just starting to think so you have a network, you've based it around studies, which was first one big study and then moved into sub studies as well. So then how did patient partners, fit in? Were they there when you helped develop the grant proposal or the idea for the study? It sounds like that was patient led as well, so help us to visualize that.
What are some other ways in which patient partners fit in to the research process and the work being done at IMAGINE?
Aida
Yeah, absolutely Anna. Right from the very beginning Sandra was one of our inception patient research partners that has been involved in IMAGINE since day one. So absolutely, we've had patient partners, even with our phase two involved in the actual development of the proposal. So certainly the theme or focus of our network being around those brain gut connection was very much an interest of the patient community that that's what our network should be doing. Beyond that, the actual proposal we submitted to CIHR was very much co-developed with patient partner input. They:
reviewed the application,
provided suggestions and changes,
developed research proposals,
reviewed the questionnaires that we we ask in our MAGIC study,
created those advertisements that you mentioned (the really witty poop ones),
worked with some of our other social media ads that we use to recruit patients
This was all very much influenced and created with our patient research partners. So again, I think the advantage has been to tap into some of the skills that our patient research partners bring to the table. And again, I'm going to pass it on to Sandra because she could certainly talk about some of her experiences. You know, we have everything from a patient research partner who's a lawyer and has provided input from legal perspective on an initiative that we did on microbiome profiles that we were providing our patients. So some of the disclosure and disclaimer information in there was reviewed by one of our patient research partners who's a lawyer, to some of our marketing experts who helped us develop recruitment material. We were doing some media releases, so we had patient research partners assist us in developing some of the copy material for that as well. I think there's enormous opportunities to really tap into the unique skills and abilities that our patient research partners bring to the table.
Sandra
You did a really great job covering everything, so not sure how much to add right now, but we've had patient research partners involved right from the beginning as Aida mentioned. There was a few of us that were involved in developing the initial grant proposal as collaborators or principal co-applicants. And there's so many projects, the one Deborah was talking about, the recruitment and retention was patient led, peer to peer, with support from academic researchers and we have several patient and community engagement research projects that have been conducted as well. We have another patient led peer to peer qualitative research study that was done under a larger umbrella sub study. So we took on the qualitative portion, which was exploring people with lived experience of inflammatory bowel disease and their challenges with mental health, and what their experiences were like engaging with gastroenterologists (G.I.s). We wanted to know if there was a difference as well with gastroenterologists who specialize in inflammatory bowel disease versus general G.I.s who practice in a community. That was super interesting. We're actually working on a paper for that right now. We've gotten through all of the focus groups and data analysis, etc. and we did it as a working group where we brought people with lived experience together with some academic researchers to work through the process of looking at the data, and talking about our interpretations, in a discussion with academic researchers to sort of really understand what's happening here where people are talking about “fill in the blank”. That's one thing we understand and sort of know about patient engagement or patient oriented research. When we engage with people's lived experience, they have a nuanced understanding that's unique and different than, say, an academic researcher that may not live with the disease. It's important to understand these perspectives, because it could bring a completely different understanding to data analysis, collection, all these different parts of the research cycle.
Anna
That's really fascinating, Sandra. And there's so many follow up questions that I could ask, and definitely something that I myself am really passionate exploring about right now, in my own research career is how to truly engage patient partners in data analysis. So a study that I've just been recruiting for, along with a graduate student, is actually going to be engaging 4 to 6 patient partners in helping us co-analyze data on facilitators and barriers to the patient partner role, exactly for that reason — thinking about the idea that the data are the patient perspective so it would only make sense that it should be patients who are analyzing these perspectives and making sense of them and synthesizing them.
Something else that you can hopefully speak to is the approach that IMAGINE has taken not only to initiate relationships with patient partners, so recruiting patient partners to the network as well as the studies within it, but then also how you maintain these relationships in terms of capacity building or even if a study lasts four years.
How do you keep patient partners engaged and how do you maintain these relationships in terms of capacity building even if a study lasts as long as four years?
Sandra
I am a believer that patient engagement is a layered approach because we have people with different time commitment availabilities and interests. Some people would like to learn more and really get in the deep end, so to speak, of doing research. And some people, maybe they're really new to research and they're not feeling super confident yet (this is where capacity building comes in, which I’ll talk to in a moment), so they really want to sit back and take on an advisory role for a little while, and start getting a little more comfortable and work their way up. I always noticed with people often it's kind of an evolution that happens or changes over time as people get more comfortable.
So I think relationship building is really a key component. I know it's talked about a lot in CIHR/SPOR, in our patient engagement framework, and all of these things. With IMAGINE, as well as a lot of these chronic disease networks, part of the mandate through CIHR/SPOR was for these networks to meet face to face, obviously not during Covid, but we still did bring our whole team together when we had our online meetings. So that was for the whole team to come together, talk about all the different parts that are happening in the network, have various people present to the broader team, have some networking opportunities. Because I've been involved right at the beginning, I definitely see evolution over time amongst the whole team, where at the beginning there were certainly some clinician researchers or academic researchers that were a little more apprehensive about having patient research partners as part of this team and what value they bring to the work, and maybe even a little awkwardness, because we do have a lot of clinician researchers who typically are used to seeing patients in clinic. Some of the concerns that relationship building was required to overcome include:
Are some of these patient partners that are in the room going to be my patients now?
Is this awkward?
How do how do we have these conversations?
How do you maintain the clinical encounters as doctor-patient relationships?
How do you maintain this professional encounter now as working colleagues?
And so it just took some time for people to adjust and really get to know people, where now it has become a little bit more normal.
In addition, capacity building for everyone. As probably many people are aware, CIHR/SPOR had the National Foundational Curriculum, where they sent two people from each SPOR SUPPORT unit, as well as the National Chronic Disease Network to Ottawa to take this week long training course, so they could go back into their respective communities and share the teachings to the teams. So that's for health research academics as well as patient research partners, and they're learning and working together. That enables the academic researchers to understand some of the barriers that people with lived experience face when trying to partner in research, and then vice versa. So we're learning from one another. We did that early on at one of our face to face meetings. We held a workshop and because not everyone was able to attend the workshop, we did a shorter version (like a one hour presentation) that kind of summarized these key principles to the whole team. That was one of the starting points to start working together and get people familiarized with patient oriented research.
This is a heavily funded Strategy for Patient-Oriented Research study. Deborah mentioned earlier that there was matched funding. So CIHR provided each network $15 million. And then the networks also had to find match funding through various academic institutes, pharma, non-profit organizations — Crohn's Colitis Canada, for example, is one of our funders and collaborators. So these are the types of relationships help to support this work. All of these partnerships and relationships are important to moving these large pan-Canadian networks that are situated all over. And thank goodness for these online zoom meetings because we have patient research partners as well as our academic colleagues situated across Canada. And Deborah earlier talked about our recruitment and retention study. That study we had patient research partners in various Canadian provinces conducting interviews in person or online, which was really nice because it's hard to do that if you're one person in one province with connections only in your area. So it was nice to kind of have that breadth of geographic range.
Now on top of the relationship building, the capacity building is super important from my perspective as a person who's also a person with lived experience. I live with Crohn's disease. I've been living with it for about 30 years, and I really didn't understand the value that I brought to health research. At first I thought, well what would I know that they don't already know? It took a little while to understand that, and to understand research as well because it was completely out of the box from my background. It's a whole new language, there's a lot to learn, there's a sharp learning curve and it's constant learning as we go. So again, we have a layered approach. You can have one hour webinars to help by giving an overview of patient oriented research or more intense training like the PaCER program — a patient and community engagement research program at the University of Calgary that teaches people with lived experience a specific qualitative research methodology. It's a year long program, so it's pretty intense. The people that take the program have to complete a research project from start to finish. So from writing the protocol to writing the paper basically. You collect your data, do data analysis, and you're learning these pieces along the way as well as practicing them. So for me personally, it provided a really great foundation to get comfortable and excited to work in health research.
Deborah
Thank you Sandra for your great explanation of the history and evolution in experience as a patient engaged researcher and you have been such a valuable research partner at IMAGINE in so many different ways. I'll just chime in from my perspective as a researcher because I think Sandra talked a little bit about the idea that researchers need to learn a different way of thinking and approaching research. Certainly for me, it's almost a decade ago now, I had the privilege of of being essentially one of the founding co-investigators of the program that Sandra described, which is the Patient and Community Engagement Research Program here at the University of Calgary. And I think what it offers, to respond to your question about capacity building, is for those patients who do really want to invest, and I'm going to say it's a big investment you can tell from what Sandra said in learning, training, and acquiring skills that maybe they don't know they had. Also learning new things in terms of how do you approach science, how do you conduct a study that would be considered scientifically valid? And while we come with the base that patients have expertise in their own lived experience, in the PaCER program the idea is to help them acquire the skills that one needs to conduct scientifically valid research. So I had an interesting journey as a researcher founding this program. We started with one project, it was actually based in osteoarthritis, and I still am in touch and in contact with some colleagues and research partners from that project. It was really important to be learning from them as a researcher to be very open and have flexibility in thinking about what the question that we're trying to answer all the way from the beginning, what's important to patients, and how would we go about asking that question? And also then how would you interpret it? So I think what PaCER does is allow the opportunity for those who are interested to do that deep dive and really become meaningfully and fully engaged in research projects. So I consider patients as my colleagues when on research projects, I have them as:
Co-investigators on my grant applications,
I have them as co-authors on publications,
I have them as presenters in presentations that we're involved in.
We share our experiences and our views and we learn from each other continuously because there’s always a new thing. And one of the things we try very hard to be mindful of is making sure we're following sort of the core principles of patient engagement, making sure it's meaningful, making sure it's recognized in terms of compensation, making sure that it's legitimate, making sure that there's a team collaboration. Underlying all of this, as Sandra has mentioned, is the critical importance of relationship building. So I think all of these things come into play. And I would just say in general it takes time and investment by all parties for those things to happen.
We've had fabulous examples in IMAGINE with several cohorts of patients who have completed the Patient and Community Engagement Research program here in Calgary. And honestly, it's so fabulous to see them continue to engage in the research community, and they have published papers from their cohort, many of them. One example was a team of patient research partners who looked at the psychosocial relationship of food. IMAGINE is very much about the mind gut relationship and the diet, as Aida mentioned, and they did a whole study looking at this very particular relationship of food. When you have a disease like IBD or IBS, it has a lot of social and personal implications in terms of how they engage with other people, how they manage their life, things they choose not to do or things they do choose to do because of food, and they published a scientific paper in a journal. Now I see our graduates talking about capacity building who are off doing all sorts of research projects, they sit on CIHR research review committees, they're part of the SPOR units, they pop up everywhere! It's fabulous because they are truly engaged and have important contributions to make. So I think this is how that has evolved over the last almost decade. And we've been able in IMAGINE to engage our patients in a whole range of different research opportunities.
Aida
And just to add to that, Deborah, IMAGINE provides opportunities inside or maybe even outside of the network, like promoting some of our investigators within the network who have connections to other groups or committees that they're involved in. They bring that patient engagement hat to those committees as well, so that opens up new opportunities. For example our nominated principal investigator, Doctor Paul Moayyedi, is also the co-editor for the Gastroenterology Journal. And I think one of the platforms that he ran for that role was bringing the patient engagement aspect. So he has now introduced a lay editor as part of the editorial team for that journal. I think it's been his positive experiences of patient engagement through the IMAGINE network that has reached out into other areas that he's involved with. And then that opens up opportunities for our IMAGINE patient research partners to get involved in some of those. We have some of our patient research partners that are now involved as part of that editorial team on the gastro journal. Others have served as consumer reviewers on the Cochrane papers as well, so they bring a bit of a lay perspective on new papers that are being published there. So I think our ability to provide a number of opportunities for patient partners to get involved has really helped maintain that high level of engagement with our patient research partners.
Anna
That's really fascinating work. And I wonder if perhaps you could give an example of a multilayered engagement approach that you took within a study or a project within your network, just to help the listeners further understand multiple ways that they could perhaps incorporate your approach within their own work.
What is an example of a multilayered engagement approach that you took within a study or a project within your network?
Sandra
I was a part of this study as a patient engagement researcher. I was on the executive committee. We met regularly to design the study, which was complicated. There was a lot of conversation and discussion that went around and this was an engagement, there was a collaboration between IMAGINE, Alberta SPOR SUPPORT Unit, as well as BC SPOR SUPPORT Unit. We had researchers as well as patient partners and people with various expertise as part of this executive committee. That was a lot of how are we going to make this project work, what does this look like, how do we design it, because it was a little complicated. I'll pass the baton over to Deborah to explain the complexity of it, and what we were trying to tackle.
Deborah
Thanks, Sandra. It morphed over discussions, and quite frankly, that's one of the benefits and challenges in patient engaged research because you're designing and thinking about the best way to do things, but the basic purpose of this, so we call it EP, because it was about engaging patient partners in research. What we were trying to get at in an exploratory way was about the relationship between patient engagement and the outcomes — the research outputs. And we designed this where we had two groups. One was led by a patient research partner and one was led by a researcher. But otherwise the groups included research partners that were patients, researchers, and clinicians. So each of them had the same mix of representatives on the teams, but they were completely separate and they didn't correspond with one another or interact. They were given the same background, the same research question, and they set out to design how they would go answer that research question and then execute that research. And they all had the same time frame. And then what we did was we used three different tools to measure patient engagement. We measured it before, during, and after the study. So we used the PPEET tool, we use the PEIRS tool (the short form version of it) as well as the ENACT tool. So these are three different tools that are measuring patient engagement, but they differ a little in their purpose and their structure, and where they apply in a research kind of study. And then we also used the whole critical outcomes of research engagement or the CORE framework by Dillon to look at patient engagement using the 11 criteria that he sets out. So it was rather complicated, as Sandra said, and took us a lot of effort to try to do this. And while it wasn't a randomized control trial and there were a lot of confounding factors because of the different team members and things, we really studied it in depth. In fact, each core group had their own dedicated research staff person who observed every single interaction, whether it was email or the meetings that were all done virtually because we were in Covid. So they documented and used observation as a method and they analyzed these data. We also had the patients do journey maps about how their experience evolved over time. We did an example looking at treatment with biologics in IBD, which wasn't the focus of the research, rather it was observing how these groups interacted. And in short, what we observed is:
That it is possible to engage patient research partners, which were in both groups, as members of the team, but they differed by who led the team.
You could engage patients at all stages of the research
the launch stage,
the design stage,
the interpretation and analysis stage,
and the implementation stage.
We found that the research outputs were basically saying, “what are the factors that are most important in the decision to have biologics?” We found that they did differ in their outputs. They identified some common measures or things that were important, and they identified different ones in each of the groups, and they used different wording.
They framed things differently, so it was a fascinating study, and it was challenging, but it was a really interesting journey and we're really hoping that people can learn from that. As I said, I don't think it's definitive and there's lots more research, but we hope we can use that as a springboard for thinking about how we continue to explore and understand the value of patient engaged research and the value of patients as research partners in our work moving forward. Sandra, did this trigger anything else you’d like to say, or Aida?
Sandra
Maybe just one last thing if people want to learn about this study. We have 4 publications that came from this study, which really get into the nitty-gritty of the layered approach.
Aida
I just wanted to thank in particular Deborah and Sandra for really taking on this particular project. I know we've all sort of drunk a little bit of that patient engagement cocktail, and we all really believe that there's value in patient engagement, but this particular study took on a very rational approach to try to measure what that impact of patient led research is. And I think that's really novel and important to have that scientific evidence in the literature. For IMAGINE to have supported this particular publication makes me really proud! So thank you to you both for doing that because I think we need more and more evidence as patient engagement becomes much more popular and really embedded in a lot of research projects and calls for research networks. We want to understand what its impact and value is overall.
Anna
For anyone out there who's listening and really wants to track down these four studies — I know that I'll be reading them myself — I reviewed one of the studies, so I do know one of them for sure... something that I'll be sure to do for any listener out there who's interested in reading these studies is I'll post links to them on our website. So if you go to asperusual.substack.com I'll have these listed under the resources section, which is located right at the front of this episode.
Something that really got me thinking as you were talking about this network and the EP4 study in general, is that slowly but surely, we're seeing that there happens to be more and more studies where perhaps patients are leading them, but they're not yet quite being published. So I wonder if any people are out there listening and thinking about it, and I think a very logical next step towards this, especially if you are affiliated with one of the networks, is to start to track each other down. So the people who are co-leading or leading these studies, because the time is now to do work like the EP4 study where you're starting to think about things like:
What it is that we're tracking?
How do we see what different capacity building measures help to ensure that these studies could be successfully led by patient partners?
How do we evaluate them?
The time to collectively plan this should be now so we can start mindfully and collectively building the evidence base to help others carry out these studies, and also get funding for them to show that it is a priority for CIHR and for other research funders to start devoting funds specifically for this reason. The time is now, and I do strongly think that the only way to help this happen is by working together to establish its importance and prove the evidence base for it. So yeah, I really commend you guys for many things. I'm sure if anyone's out there like me, you may be wondering, this network's clearly doing some amazing stuff, what are ways in which I can get involved? Perhaps the PaCER program is a way to learn more about engagement?
What would you say to people that may or may not have direct lived experience of IBD and IBS and are interested in getting more involved?
Aida
So certainly reaching out to our network directly with me, you can certainly find my contact information on https://imaginespor.com. As we're sort of transitioning and we've moved quite well into phase two of IMAGINE, it is a little bit more limited at this point in terms of opportunities for involvement as a patient research partner, but we're certainly not closing the door if people are interested. Please reach out to me, I'm happy to have a conversation, talk about what our different patient research partner roles might be and if that's interesting to you, how you might hear a little bit more through our patient engagement working group. That's where we announce a lot of opportunities, and take it from there. So absolutely, if patients are also interested in participating in some of our research studies, a lot of those are wrapping up right now because they were part of phase one, but again, I'm happy to connect you with our research coordinators that might be involved in those projects as well. Yeah, absolutely, just reach out. I’m happy to talk over Zoom or a quick telephone call and just discuss what our network is doing and how you may choose to get as involved as you'd like within the network.
Anna
And what about the PaCER program? If somebody would like to get involved with that?
Aida
Absolutely. So we've actually run three cohorts of PaCER already, two in our phase one, and we've completed one in our phase two. We have in our plans one additional cohort, it's still in the works. Our original intent is certainly to have a bit of an Indigenous community focus to it, or perhaps a little bit more broader with equity, diversity, and inclusion where we're still working out the details there. So we haven't started to recruit yet until we finalize the details on how that's going to get organized and implemented, but that would certainly be a possibility for individuals that would like to run through that. We'll be promoting it a little bit more extensively once we finalized it this coming fall. Again, as Deborah mentioned, it's an intensive training opportunity, but it is a great way of building your skill set. If people are interested and fit the criteria for this next cohort, we would certainly be happy to talk to you about it and share a little bit more of what you would expect to go through in the PaCER program.
Sandra
I would also like to add to all this patient and community engagement research stuff, Anna, you mentioned earlier that often we don't see publications from this patient led peer to peer type of research. There are quite a few patient and community engagement research, so PACER led studies, that have been published. This fits very well into where we're at right now with IMAGINE SPOR 2.0, which is really focusing on knowledge translation because of the outputs that come from these projects, which usually lead to a publication, presentations at conferences, maybe even a webinar that's more focused to a general audience and to people that it might matter to most. And so these PACER studies are also aligned and creating impact in the knowledge translation space too. So this is where we're at now. And SPOR 2.0 is really trying to figure out and focus on the outputs of all the work that we've done, and how we can share those learnings broadly as well as in the academic community.
Deborah
All good stuff, and I think that with all of those opportunities, please reach out, whether it's to Sandra or Aida or myself. If people are interested, we'll find a place and see what opportunities are happening. There's a lot of work that's been stimulated as a consequence of IMAGINE. So yeah, please reach out and we are interested to hear from anybody who would like to engage.
Challenges in publishing patient engagement information within research papers
Anna
And it's probably a bit of a lofty goal, but something that I've even encountered, for example right now a group and I are working on a scoping review of patient engagement in pharmacy practice research, but in order to identify whether these studies actually engaged patient partners, we have to basically pull the full text of thousands of studies, and screen them, and read through the methods in order to identify them. This could have been really helped if everybody did what BMJ open does, where they require the article to clearly say what the patient and public involvement, if any, was in the paper itself. So I'm so glad, Sandra, to hear that there are a lot of publications that are patient led, and perhaps in my screening criteria I'm just missing them. So it'd be really interesting if somebody did do a review. Or maybe somebody is synthesizing them, and then also put forth a recommendation, even though it's hard to get everyone to adopt it, for ways that we could label them even in keywords so other people could easily find them. Something I'm also passionate about is repositories where we, as Canadian researchers, could just add the list of work that we're doing related to different topics like this one, and then we could all find each other's work and learn from it as well. I think, part of the problem, too, there's so much information out there that sometimes you think there isn't much at all, because it gets lost among all the different publications.
Sandra
Yeah, we've run into similar challenges many times when we're working together and and then getting to publications. Journals have word counts, and there's the actual work that's being done, which you're trying to write about, and that often fills the word count and doesn't allow space to describe and discuss the patient engagement aspect of the work. It's so similar with some of these patient and community engagement research publications. It's about the work that's being done. It's the research that they've done. And so there's not going to be as much space to describe the process of conducting, and who did it, and what did that look like? How did the team work through it and all those pieces. It's like a whole separate paper. So I think that's some of the challenges in patient-oriented research and patient engagement in research. Some limitations or barriers that we face when working together is that we can't always can't describe everything in one paper. We lose some parts of it.
Deborah
And that's one of the great things about publication now, online, because there's more and more growth of supplemental materials for people who really do want to dig in and have that background and really understand it. I think that has provided a vehicle for that additional information to be made available to researchers to learn from, so that is an advantage too now.
Anna
My previous supervisor, Annette Schultz always teases me because I love supplemental sections. All of my manuscripts and papers have “supplement one”, “supplement two,” “supplement three”, for that reason as well. It's nice to provide templates that people can look at and adapt to their own research as well to really help with those engagement methods.
So now, as we head into the tail end of our podcast,
I'm wondering if you can help us look at the future of IMAGINE, perhaps beginning with your work on your second phase of funding, so IMAGINE 2.0?
Aida
For sure. A lot of our research is still ongoing with phase one. We've had a number of publications come out already, but especially our main research study, we've just completed recruitment recently, so analysis is still in progress. It's hard for us at this point to translate, or put into practice, some of the potential treatments and therapies related to that work. But what our network has been focusing on for phase two for the knowledge mobilization and implementation science really has been on, as Sandra mentioned before, a bit of some of the other learnings from our research. One of the key areas I think in particular is around digital tools, in support of helping people self-manage their IBD and IBS. So that's an area of particular focus for us. Sandra in particular has been leading an interesting initiative around digital storytelling which flows nicely with some of our digital tools supports as well.
Sandra
Thanks Aida, just a warning, I could talk about this for about an hour easily! I mentioned earlier in the episode that I took a Digital Storytelling facilitator training program through the Story Center out of the USA and I absolutely love this methodology that we use. We use the seven step approach to support people in creating impactful, powerful, short digital stories. As we got chatting about where we're at now and SPOR 2.0, which is really about knowledge translation, dissemination, and working together with people with lived experience including patient research partners as well. We wanted to know how can we reach beyond the traditional academic roots, publications, and presentations at conferences? There were a few of us that talked about the idea of bringing together a group of people with lived experience of inflammatory bowel disease, so that includes Crohn's disease, ulcerative colitis, and/or irritable bowel syndrome, to create these short digital stories on their challenges of living with IBD and or IBS. I say “and/or” because some people who live with IBD also have IBS. We wanted to share their stories and challenges of mental health and or diet, which are very interwoven. We touched on that a little bit earlier about the psychosocial aspect of diet, because it's all tangled up when you live with digestive diseases like this. These are kind of moment in time stories. We had seven people join us for the Digital Storytelling Workshop and everyone created a digital story about their own personal experiences. It was interesting because there were three people in the group that chose to tell one of the hardest things that they've experienced living with inflammatory bowel disease and the challenges of mental health. One person in particular had never told the story, even though this individual has spoken about her story many, many times. She worked for a Crohn's Colitis Canada, she was quite open about her experience. It was just this one part that she really struggled with, so this was the digital story she chose to tell. Then, we work together with the workshop participants who were like patient research partners or patient partners to co-create an IMAGINE/SPOR educational event. We were hosting these educational events every couple of months where we'd have different topics. We thought, what a great webinar this would be! We can show the digital stories and have each storyteller/patient partner there to be a part of the discussion and answer questions. Because really, when we have people that create stories, those stories belong to them, they don't belong to us. They don’t belong to the researchers, they don't belong to me as a facilitator, they belong to the storytellers.
And so we held a an online digital storytelling event. We have it up on our IMAGINE SPOR network website, and we set the stage to talk about what the digital storytelling methodology is and the work that goes into creating a digital story, which is a lot. People really have to take time to reflect and each person goes through the process of deciding on the story they want to tell, writing it, doing their own voice narration, making all their own creative decisions about the type of images, music, and sounds that they might want to include in their stories. So it’s really a story that is best reflected as how they want their story to be told. Then, we shared a digital story, followed by a short Q&A with each storyteller, and then moved on to have a full group discussion. This was open for anyone to attend, so it could be other people living with inflammatory bowel disease or irritable bowel syndrome, it could be clinicians like gastroenterologists or nurse practitioners that work in this space, researchers, or just the general public who maybe want to learn a little bit more about any of these pieces I just highlighted. So it's a really nice way to highlight the work that we're doing at IMAGINE, but from a personal perspective where we as humans connect to stories. So it's a way for us to understand it in a unique way.
Anna
And are these videos available on your website for people who would like to check them out?
Sandra
Yes. So there is a video that has our presentation about the digital storytelling methodology as well as some of the discussion. We also separated the story videos from the main recording, because part of what we teach in digital storytelling as a facilitator, which is taught through the Story Center, is what we call a living consent process. So at any time if a storyteller chooses to take down their story from the website, they have the autonomy to do so, to reach out and say “hey, can you pull my story down?” People's lives change, and a year or two later, they just might not want that out there. So we did not embed them in the recording, we removed it and then we provided the digital stories as separate links. So there is a separate link to see the stories, which brings you to a page that has all the it has six individual stories so you can watch those.
Anna
That's awesome. I'll be sure to include the links to those stories as well, as well as the main video from the session, so anybody who's interested in learning more about them can definitely check them out. I've had the good fortune of meeting Kristy Wolf through this podcast, and she also has her own podcast focused on digital storytelling so I would recommend this to anybody who's interested in digital storytelling. The name of the podcast is Co-Created and it'll be a great way to learn about that method as well.
Sandra
And I should mention that this was a collaboration with IMAGINE/SPOR and the Alberta SPOR Support Unit Patient Engagement team, because I work together with a colleague of mine, Sadia Ahmed, through AbSPORU through the patient engagement team. Her and I co-facilitate digital storytelling workshops. It will be on our AbSPORU website soon, but you can reach out to us if you're interested in doing digital storytelling workshops. It's a service that we offer through the AbSPORU patient engagement team.
Anna
That's awesome. You guys are full of innovative ideas, aren't you? And I wonder if as we bring this podcast to a close,
Are there any last key takeaways, lessons, or innovative ideas that you'd like to share with the listeners that you’ve learned from working with IMAGINE, as well as other patient engagement work that people can listen to, and percolate on, and think about applying to their own patient engagement practices?
Aida
Wow, there could be so much to answer with. I think one of my key takeaway for our organization is flexibility. Being flexible in opportunities to engage with patients, depending on the interest, the time commitment, and the individual health of persons living with these diseases. It's important to remain flexible to allow people to be as involved as they want in different projects, and I think our network has done a pretty good job of providing different levels and different opportunities that require less time or more time and more involvement and they're all valuable to the network. I think that's a really important takeaway for any researcher who's looking to involve patient partners as part of their work. There needs to be flexibility and making accommodations throughout to enable those interactions to be fruitful. For me, that's a key point. And Sandra is probably going to talk about the capacity building because I know that's really close to her as far as lessons learned. We need to train both our researchers and our patient partners on how best to work together.
Sandra
I agree, and I think we've learned a lot over time as a patient engagement and patient-oriented research community, from each other, from the SPOR SUPPORT units, from the networks, from all the research that's being done across Canada and beyond, we look to the UK for examples of patient and public involvement. So we do have a pretty good understanding of some of the foundational elements through CIHR and SPOR, we use the patient engagement framework. The mutual respect, which is really about relationship building, teamwork, and capacity building and supports, I'm sure that in other episodes you've gotten into compensation and what it looks like. So all of these pieces are important. It stands out as relationship building as a foundation because we are in two very different worlds to start with.
Usually, there are some patient research partners who have lived experience and also come from academia, and it is a little more of a natural, easy fit because they already speak the language and they have an understanding for health research and how that works. But it can still feel clunky and intimidating at first. I can definitely go back and remember what it was like when I first got involved. Then there’s the capacity building because it's overwhelming. It's like, what am I doing here? I don't understand what's going on. I mentioned it earlier, but there’s that steep learning curve of figuring out how do I fit into this? What does this look like? How can I contribute to this kind of work. And so the capacity building, personally, is really important. I'm sure if we had 20 patient research partners, we might get some different thoughts. I love to learn as well, so it's a motivating factor for me to be involved and do a lot of the training and learning. I am grateful that I had the opportunity to take the Patient and Community Engagement Research Program as a starting point and then build from there, doing the foundational curriculum and all of these other trainings. Whether it's a one hour webinar that anyone can join, there's so many opportunities out there that are still being held where people host these opportunities to learn about EDI, about compensation, about all these different bits and pieces. There's also so many recorded opportunities where people have hosted them and they’re available on their website. So whether it's IMAGINE/SPOR or AbSPORU, everyone has so many resources now that we've collected over time that we can use to help with this layered approach to capacity building. I also understand not everyone can commit to a year long intensive program like the paCER program, and we still need to build capacity for other team members to work together in this space.
Anna
I like that. One of my original co-hosts, Roger Stoddard, also said how it should be like a menu when you approach capacity building, and it's a list of choices that people can select based upon whatever their background is and what the needs of the study are. Much like everything else with patient engagement, there truly isn't a one size fits all approach. Something else that really stood out for me about your network is that it does seem like the approach you take ensures that there is a core level of competencies that your researchers who are really involved in the engagement do seem to gather and obtain as well, which really helps maintain the integrity of all that you do.
Thanks again for coming on and sharing all the wonderfulness that is you and your network as well. As we wrap up, I'd like to remind the listeners to check out our website, asperusual.substack.com, for resources from today's episode and interactive transcripts from this and previous episodes. While you're there, please be sure to subscribe to this podcast or you can do so wherever it is that you download your podcast episodes from. If you'd like to contact me, please shoot me an email at anna.asperusual@gmail.com.
Lastly, if you feel that this podcast is a good use of your time, please do share it with your colleagues, friends, or whoever else may be interested, regardless of what their status is in your life. Thanks so much for tuning in. And until next time, let's be sure to keep working together to make patient engagement in research the standard or as per usual.