S2E8 - Patient partners weigh in on the future of patient-oriented research (interactive transcript)
In conversation with the Patient Advisors Network
Overview
In this episode of asPERusual, host Anna Chudyk sits down with Alies Maybee and Donna Rubenstein from the Patient Advisors Network to discuss the recently published Reimagining the Research Landscape Report. This patient led-report examined ~200 patient partners’ perspectives on the future of patient-oriented research in Canada. Tune in to learn about the three main take-aways from the report, including:
Changing the research landscape: What needs to occur at micro, meso, and macro levels to promote and support patient engagement in research;
Growing the patient/caregiver partner community: Targeted and intentional outreach to open doors to research for future patient partners;
Changing academic culture: To promote respect and prevent the tokenistic engagement of patient partners.
Bonus content includes:
expected and unexpected benefits of patient-led research;
tips for establishing patient advisory councils to support in-depth engagement;
next steps for fostering respect and reducing discrimination within research teams and;
other tangible applications of the Reimagining the Research Landscape Report.
Meet our guests
Donna Rubenstein: is committed to demonstrating the transformative value of the patient and community voice through partnerships in all aspects of healthcare. Her views are shaped by personal experience as a patient and caregiver as well as a career working internationally bridging cross cultural differences in business practices. PAN and the people she met through the network inspired her patient partner journey –helping her see new and bigger possibilities. She wants others to have the same experience.
Current activities include projects at the provincial and national level. These include the Patient Public Partner Council for the Maritime SPOR Support Unit, Nova Scotia Health Patient Family Advisor Building Connections Committee, Nova Scotia Health Virtual Innovation projects and primary care research related to interdisciplinary models of care.
Alies Maybee: brings her patient/caregiver background to her commitment to improve many aspects of healthcare. She has on the ground experience as a patient partner on over eight research projects since 2014 and has taken the PaCER, University of Alberta course training patients and caregivers to be community researchers.
In the research management and governance area, Alies was one of the initial citizen members of the Research Management Committee of the Canadian Frailty Network for nearly 4 years evaluating research applications. She has also been on the ARTIC Operational Committee focusing on scale and spread of proven interventions and the INSPIRE-Primary Health Care Operations Committee focusing on access to care, the care experience for patients and better health outcomes. She was on the National Patient Council and the National Leadership Council for the Primary and Integrated Health Care Innovations Network. She is a member of the Policy Engagement Committee for Research Canada.
And finally, she is one of 12 co-founders and current co-chair of the Patient Advisors Network (PAN), a national community of practice for patient/caregiver partners. PAN is a fully independent organization of patient/caregiver partners in Canada and as such, is unique.
Contact the host: Anna M. Chudyk - anna.asperusual@gmail.com
Table of Contents
Patient Advisors Network and the SPOR Refresh National Steering Committee
Fostering accountability from academic researchers to patient partners
Importance of bringing a “whole person” approach to engagement
Resources
All of the resources below are free for everyone to read:
Chudyk et al. Future directions for patient engagement in research in Canada (journal article)
Episode Transcript
Anna
Hi everyone. Welcome to season two of As PER Usual, a podcast for practical patient engagement. My name is Anna Chudyk and I am your host. For those of you that have been tuning in regularly, you know that this season has been primarily focused on raising awareness for entities that have been funded to support patient oriented research by the Canadian Institutes of Health Research, which is Canada's major funder of health research. As we'll be using this term a lot, I want to clarify that patient oriented research refers to research that focuses on patient identified priorities and outcomes, and engages patients as active members of the research team.
Well, for this episode, we're going to take a slight detour from this area of focus to learn about some other exciting initiatives that are particularly of interest to me, and I'm sure the rest of our listeners as well. To start us off on this interesting detour, we have Alies Maybee and Donna Rubenstein from the Patient Advisors Network. They're going to share with us the findings of a report that they co-authored about patient partners’ perspectives on future directions for patient oriented research in Canada. This report, titled Reimagining the Research Landscape, was commissioned by Canada's Strategy for Patient Oriented Research to help inform all of the work it is doing to define the future of patient oriented research in Canada. Alies, thanks so much for agreeing to come on this podcast again. Donna, it's great to finally have you on. Could you both start us off by telling the listeners a little bit about yourselves?
Alies
So I'm delighted to be back again, Anna. This is such fun and I'm so glad to do this. Together with Donna, I'm the co-chair of the Patient Advisors Network, or PAN. I have also been a patient and caregiver partner since 2011 in all kinds of areas of health care and all kinds of levels.
Donna
Thanks for having us here today. It's a lot of fun. And to be able to do this with Alies. So I'm also co-chair of the Patient Advisors Network. So we're like sisters in this effort. I'm joining you from the East coast, Halifax, Nova Scotia. I've been a patient partner for just about seven years. And like many people, I think this would be the same story. It all started with having some challenging experiences as a patient and feeling like the system could be better, and wanting to make it better for future patients.
Anna
Awesome. So why don't we start off by building a strong foundation for the listeners to follow along
Can you please tell us a little bit about what the Patient Advisors Network is?
Alies
So I'll start with that by giving you a brief overview of PAN. At its heart, at its core, it’s a community of patient/caregiver partners. And it's an ability for us to get to know who we all are and also to build our capacity and be a better and more effective patient and caregiver partner. So we use webinars, and we have developed tools for ourselves so that we can become better at what we do. So that's one aspect of PAN. The second aspect, which is more pertinent to today, is the fact that as a Canadian not for profit, we partner with other organizations and projects in healthcare in order to share the collective wisdom of our larger community. And so that's in a nutshell, what we do.
Donna
And I'm just going to add in that the one of the aspects that's kind of unique about PAN, and that drew me in initially, is there are a lot of support groups out there. Most of them are kind of condition specific or have an area of focus. And PAN is is one of the few that covers all areas. And so we have patient partners who are involved in research and also people who are involved in all other areas of the health care system. And as Alies said, we're national and we cover every province and the territories.
Anna
Thank you so much. And for anyone that's interested in learning more about PAN, I strongly encourage you to tune into season one. When Alies came on and told us all about its history, what it sets out to do, and how people can get involved. Or you can also Google Patient Advisors Network and it'll pop up as well. And I really love your website. It's really pretty. And it's also very, very user friendly as well. So either source of information is amazing.
How did the Reimagining the Research Landscape report come about?
Donna
Well, maybe I'll start off and then Alies you fill in the blanks. So the project started with CIHR approaching us and asking us how might PAN can contribute to the process you were mentioning earlier — the SPOR refresh, the consultation that they were undergoing. So we had a number of conversations with them exploring what that might look like. And I do want to mention here, because it's important to commend CIHR for their openness and willingness to hear different ideas and their flexibility in looking at that, and essentially to trust us to take on this project because we're a patient partner, independent group. So the result was, as you mentioned, they commissioned us to do a few things:
The first was to provide a PAN representative to co-chair the National Steering Committee and that ended up being, as many people know, Diana Ermel.
Second, to have us consult our community and provide a report.
So to do this, we decided to set up an advisory council because one person cannot represent the whole community. So we had four PAN members on this council to support Diana, the rep on the steering committee. And then in parallel, to do the community consultation, which ended up being a survey, as well as conducting and hosting two focus groups. And so this approach is a bit different than most situations because it was all patient led from literally beginning to end, which is quite unique. So you know, in doing the survey we decided the questions. We facilitated the focus groups, we analyzed the data and we prepared the report.
And I'll just mention, in terms of the survey and focus groups having it patient led completely allowed for a different level of ease, or sometimes people use term safety, than having a staff person or a researcher. There's just a different element that comes in. So this was especially relevant with the focus groups. So that aspect is is unique.
Then the other piece that they were interested in is, we were able to tap into our community, which covers across Canada, and into the wide networks of our own members because our members are spread out across so many groups. That was what helped us reach a population that CIHR could not reach. So it ended up being a really unique aspect of the work. And so as an example, we were able to connect with patient partners in the population that are involved in health care, and aren't involved in health research but are really interested in becoming involved. I was really excited to hear from this group because that perspective wouldn't come through in their consultations across the country. So this ended up being a significant piece. And they were about a third of our respondents, and they had some really interesting and surprising perspectives to share, which I'm sure we're going to cover as we move along in the conversation.
So with the survey and the focus groups we generated a ton, and I mean it literally, of really great qualitative and quantitative data. So we had a lot and our team worked through all that and we talked at length. This was a really important piece. So what were we going to do with our results? How were we going to communicate that? And the approach, the way we did it, was something really important to us to look at and go with what I would say was beyond traditional. So we decided to take an atypical approach. And I think, again, having this patient partner led provided a little bit of freedom to say, well, why does it need to be in the traditional way? What if we did something a little different? So our goals we set out very clearly were that we wanted to connect with the patient partner community as well as researchers and make it easy to digest. So, you know, some of the things we landed on:
we used a storytelling format
we used lots of quotes to convey what people were sharing, and we had a lot of them
we used the first person voice and
we used a series of illustrations.
I'm going to stop there. There's a lot more to share there, but that gives Alies some room to add in there I think.
Alies
From the sort of factual point of view, Donna, I'm just going to jump in and say that we had 262 people fill out this survey. So it was not a small sample size. It was a respectable one. And we had about 70 questions. But because we split the audience between people who were experienced in research and people who had not yet been experienced in research, not everybody got stuck with all 70. But it meant that we had quite a great deal of data. Then we developed a process by which we could analyze it and see what the gold mine had to offer.
Anna
I think before we dig into the findings of the report, I'd like to sidestep slightly because there's many, many things that I find innovative about this report. Donna, you have taken the words out of my mouth about the things that I wanted to highlight. But I wasn't as aware that you had created this setup that lots of people talk about, but we as academic researchers don't necessarily carry out as well as we should, or maybe we don't know how to operationalize it. What I mean is having 1 or 2 patient partners that sit within a broader group of academics and other researchers but are also connected to a more diverse group of patient partners that they connect with to inform their work. So could you explain just how that worked for people who I think should start thinking about this? I know that an anxiety that I hear from patient partners is, how am I supposed to represent the perspectives of every patient partner? And then academic researchers also say, well, how do I get a more diverse group? If I have 17 patient partners sitting at the table with seven researchers, that'll be pure mayhem.
Would you mind explaining more about how you structure the process of having a small group of patient partners that sit on a steering group and whose perspectives are informed by a larger group of patient partners that are outside the steering group?
Alies
Before steering committee meetings: If I can start, what we did is when Diana said “we're having a steering committee meeting, and here are some of the things that we're going to be discussing”, then the council that supported her would have a meeting beforehand with her. We would discuss the topics and we would come to a consensus about the key things that she would bring forward.
After steering committee meetings: After she had the meeting, we would have a debrief and see where we went from there and what actions we would counsel her to take as a result. So that was the mechanics of it, and it worked, I think, very well.
Donna
Yeah. No, it was beautiful. I think the one thing I would comment is to be careful that there isn't a cookie cutter model for this type of engagement. We spent time planning what would work and what would make sense, and we tried it out and and it did. It takes time. And I would just put out some people, but like most things you invest the time upfront. You nurture the plants and you give them some fertilizer upfront. And you see the investment has returns after:
it took pressure off Diana,
gave a much more richer and fuller perspective.
And there was continuity then, because as we were getting towards the end, we had that discussion that had happened along the way. So it was evolving. And I'll say this, a lot of projects, we see a patient partners brought in in the middle or the end and it's like, so what are your thoughts on this? And it's challenging when you haven't been part of it until then because you're seeing it in a slice of time. So we had that continuity from beginning to end.
Anna
What did you find as the benefits of having a report that was solely focused not only on the perspectives of patient partners, but also led by patient partners? What do you feel was unique? I understand the innovation you covered, but could you help some listeners better understand that as well?
What is the significance of having patients lead the creation of the report from start to finish?
Alies
If I can just start and then Donna, please jump in. But one thing that really strikes me, and this isn't the only experience I've had where patients have basically taken the lead, but we understand different questions to ask. I think that's part of the beginning of this, because you can survey all kinds of people about all kinds of things but if you're always asking the same, you know, 5 to 10 questions, are you going to see the things that are not being asked? And in our case, because we are patient/caregiver partners and not researchers, we were asking different sorts of questions, albeit some of them were similar to what the regular consultations had. But I think that was one of the really important things is that when we designed this survey, we knew what kinds of questions we wanted to ask based on our own visceral experiences in research, trying to get into research and so on. And we asked those questions of our community.
Donna
And I want to add to that, because this comes up a lot in discussion. I didn't have a research background, so I've learned over the last few years how the strength of research is also its weakness. In research it's all about consistency and establishing reliability and validity. So there's a tendency when selecting a survey, we select something that's validated and it's been around. And then sometimes patient partners challenge or bring up questions about that set instrument or survey. But it's kind of dismissed or put aside to say, “well this is validated. There's data and the process of challenging, this is a whole other research effort and that's years away.” So we were kind of liberated as Alies said. And I think by taking off those shackles, and that sounds a little extreme, but it opens the door to innovation. And I do want to point this out when we talk about wanting to bring a little bit more innovation and creativity into research and not be limited. That's where that patient perspective can help do that. Now, I understand that I'm not challenging the rigours of research methodology, but saying that patient partners can push the boundaries a little. And what we discovered, we do think that the data we generated is different, and the insights are different because of that.
Anna
Totally agree. If you keep asking the same types of questions you're always going to get or more often than not, the same types of answers. And I think if people with similar backgrounds, similar places within the ecosystem are working together and are the ones generating the questions, they're going to come from their point of view, and they probably will not gather the full perspective of what it is that they're trying to measure.
Could you share with us some of the questions that you did end up asking, either in the survey or in the focus groups that you were particularly excited about, or that pointed to things that you weren't necessarily anticipating or weren't there in the literature?
Donna
Let me give you an example, because this was interesting when we explored the whole area of feeling safe and comfortable and contributing (how somebody contributed). We had a number of questions around, “do you feel comfortable asking questions and meetings?”, “Do you feel comfortable challenging and speaking up?” So there was a whole series, and on a number of them we had a significant percentage of positive responses that actually said yes, more or less. And we were a little surprised. But then we had a couple of questions that took off from that, and asked “when you do contribute, do you feel like what you're contributing is heard”, “Is it listened to?”, “Does it make a difference?”, “What happens to it?” And the percentage went dramatically down. And so it was really clear that people, perhaps they're on the agenda, they're asked what their opinion is, but what happens to it is in a lot of cases, in a significant number I want to say, is limited. People aren't being heard. And so that was an insight that's quite significant. So it's saying, you know, what does respect look like? Respect is more than just asking me my opinion. It's hearing me and actually doing something with it. So that's an example that was really good.
Alies
I have one. It leads a little bit to some of the findings. We felt because there's a lot of interest in diversity and equity, in those issues, that we should ask outright. So we did have a question that said, “in your experience on research teams, have you experienced any bias or discrimination?” And, you know, when we put that question together, we fully expected to have people comment on feeling bias because of their race or their gender or their sexual orientation, etc.. And we got a few of those, maybe a total of five. But what we got absolutely, overwhelmingly was the feeling of being discriminated against because they were not academics and because of who they were. And that was a real eye opener. And that really laid the groundwork for us to go back and look at the rest of the data with a different set of eyes and come up with one of our findings.
Anna
That was definitely something that stuck out to me as well. When I entered into that bias section, I was expecting what you were first saying, Alies. And then as a person who works in this space, once I started digging through, it made sense. Because so much of your other findings, which I'll ask you about next, but for example the respect, the accountability, the feeling heard, all of that, oftentimes the reason it's not there is perhaps because the research landscape doesn't necessarily equally value the voices of its different contributors. I'm glad that you guys labeled that area bias, because it is a form of bias. You're judging the information that's coming in according to your perceptions of maybe the knowledge, or just to be crude, the worth of the voice that's speaking it in the academic sense as well. I found that beyond interesting. And I think another message that people need to take home is that it's not enough to just create a space where everybody's free to listen. They can input. So yes, they feel included, but patient partners always say things don't have to be my way. But as any other researcher, I want to know why was or wasn't my input taken into regard? So it's closing the loop and also bringing in that accountability piece.
What do you think are some simple ways that academic researchers could create more accountability to the information and the perspectives that are provided from patient partners?
Alies
I'm not sure there's a quick and easy answer to that, but we had suggestions, they're numbered in the report, and and many of them deal with some aspects of that. So I would certainly suggest that people have a look at the report for that. The other thing, if I can, I just want to talk about our findings because we feel there are three key findings:
THE FIRST FINDING is that a lot of the issues that arose confirmed what other people were saying in the other consultations that happened around these issues. And so there were no surprises there. But what we did with the material that we got back from people is that we clustered them according to micro, meso and macro, to use the wonderful academic terms:
Micro-level: What are the support and changes that can happen within a research team?
Meso-level: There's two pieces to that: Who are the middle people that sit between CIHR and research teams? One would be for example, the SPOR units themselves. They sit sort of in the middle between CIHR and the research teams. But the other people that sit in the middle are the are the fundholders. So those are the universities and the hospitals who dispense the funds. There are changes that they could make themselves to make it easier for patient partners to contribute to the research landscape and to open the doors to more people.
Macro level: The system funders themselves. So we're talking about CIHR but also some of the major funders throughout the provinces and other funders. There could be changes to how they set up their research grants in the first place, what kinds of accountability mechanisms they set in place, how they evaluate who should be funded and who should not be funded. All of those things.
There were suggestions that came at those three levels, and I think putting them at the right level makes a big difference, because otherwise you put a lot of burden on people in the research teams to make changes that they don't have agency to do. So that's the first of our findings.
THE SECOND FINDING, which was great fun and very exciting to CIHR is is the whole business of how in the heck do we get people into research in the first place? And we had people who've been hammering on the door for three years or more and they've sent emails, they've heard nothing back, and they're really frustrated. So there's a high level of frustration, I would say, amongst those who have tried to get into research and have not. And there's a lot of elements to that. I think that the research community on the whole is not that great at communicating, but that isn't the whole story. There's also, a great tendency for researchers, because of the pressures of time and the structure of the research system, they go to their favoured few patient partners over and over again. They've developed the relationships and so on, and there's a lot of value to that. But it doesn't help open the door to others. And so some of this is going to rest with changing the research process so that more people are available, that we have more opportunity to develop relationships with a wider group. So the favoured few becomes the favoured many. That would be part of it. And I would say that what we found is, by and large, people get into research through word of mouth. They don't get into research through the SPOR units easily. I mean, few do, but very few. Most of them get into research through word of mouth. This is not a systemic way to grow the patient, caregiver, partner, community and research. So that's the second item, the knocking on the door of research.
THE THIRD FINDING, which we think is actually one of the more exciting ones, is what we were talking about earlier. And that is a lot of us feel like outsiders and we feel like outsiders because of lack of respect, tokenism, all the usual things that many of us have been grumbling about for many years. Those symptoms really are symptoms of the underlying cause that we came to see. That question on bias and discrimination is really the unconscious cultural lens of the workplace culture that is health research and I dare say the workplace culture that is healthcare writ large. Anyone who has lived and worked in any environment knows that there's a culture around your workplace. I come from the technology environment and believe me, it is much different how we speak, how we talk, how we dress, what's important. If you're late for meetings, too many times, it's a firing offense. This is not true in healthcare. It was very, very different experience for me to become a patient partner. So there is a workplace culture. And once you live and work in it for a while, it becomes unconscious to you. So you then start making judgment calls. You start designing things on the top of those unconscious assumptions. And we as patient partners come barreling in from whatever accumulation of cultures we have in our background work, actual ethnic culture, or whatever, and we're crash into this different culture and we need to adjust, but we don't know quite what we're adjusting to. And we're judged and we don't know why we're being judged sometimes.
So that, I think, is our biggest finding — that the actual research workplace culture, the unconscious assumptions that people have in that culture make it very difficult for us to feel like we're insiders. But it is possible because we had wonderful people who said, I've had a bunch of experiences, and I've had a couple that have been really good, and so we know how to do that. We know that it can be done. So that's the positive news. And we need to do that because it has huge equity implications. If we want to open the door to a larger, more diverse group of patient/caregiver partners, then we need to figure out how to handle that so that people of high privilege like myself, don't feel like outsiders.
Donna
You've covered it well. I would just say on the last point you made, because it's something for me that was really encouraging and exciting about it all. We now have ten plus years of a depth of experience, both by researchers and patient partners. We kind of move beyond the theory and we should be tapping into that. So we have people, as Alies said, and we've heard it in the data, there’s areas we need to do work on clearly. But people have had some great experiences and they're saying, well, I know how this can work so we can do it. And so how do we draw on that? It's there to draw on. And so I found that really encouraging coming out. There's a ways to go, but we do know what it can be.
Anna
We've, in different venues, talked about different ways to draw on positive experiences and to collectively create a culture that better supports patient engagement. Exactly. From that relationship level up. And I think it is really exciting stuff.
So are you considering, as a follow up to this report, perhaps publishing another one that really hones in on what these positive experiences are?
What are your considered next steps?
Donna
I do want to mention because we've had an incredible reaction to the report, which we're thrilled because this isn't a report that's going to sit on the shelf. It's really a conversation starter, and that's how we see it. And so there are people going away and saying, I'm going to use this report to talk to my group and look at how we're doing and what does this mean for us, which is which is great. There are areas of the report that need more exploration if you want to call it, and further work. And so when Alies was talking about the workplace culture it's the tip of the iceberg. So what does that mean? What does that look like? Where do we go? So there's definitely more work to come from that area.
Alies
I just want to add there are things I think that individual researchers, individual teams, etc., and funders can do. But in the end it's:
Challenging the assumptions. So that's one layer.
But the other layer is there has to be change in the process of research because otherwise people are fighting upstream. They want to do the right thing, but they're having to fight the system to do the right thing.
One obvious example is the business of patient engagement is about relationships and developing relationships. But there is no systematic, systemic support for the development of relationships. It is assumed that it will all happen within the confines of the research project itself. But by the time you get the grant, you hopefully have at least signed up one patient partner. But you haven't really maybe, you know, developed a relationship because of the exigencies of trying to get the grants out there and get the funding and get the research underway. So that's a small piece of it.
But there are other things related to the fundholders. Nobody has really talked much about them, but they are a real stumbling block sometimes in terms of the flow of monies to patient partners to reimburse for expenses or there's compensation coming and so on. And those barriers are huge for people who are coming from less privileged backgrounds where they can't afford to underwrite the expenses in the first place. So there's there's a lot about compensation and all the vagaries of that. Those things all need to be addressed.
And I want to sort of end with the other piece that I feel very strongly about. We all know from things that have been studied, that research from the twinkle in the eye to implementation takes an average of 17 years. In this day and age, with the pressures of climate change on health, with the pressures of people coming from war torn countries to this country and their health needs being perhaps different and putting pressure on our system, and all the changes that are happening rapidly. The fact that our health systems are crashing and burning and need input to make good decisions to stop them, and maybe create healthcare systems for the future, this requires more rapid input from the research community. And there are ways of doing that. I'm absolutely convinced that we cannot keep doing things the way we've always done them. So how do we keep academic rigour and yet accelerate it so that it has impact when it is needed? That, I think, is the big challenge for the research community writ large and certainly for the funders.
Donna
I’d to throw in one quick thing, and this is at a different level, but I'm allowed to go back. You asked a question earlier on about what individuals could do. And we said it's complex or there's a number of things. But one thing you mentioned and Alies mentioned was relationship building. We talk about it, but it's fundamental. And so when when listening to a patient partner, what can a researcher do to close the loop? You talked about accountability. Take the time, whatever it is in a meeting when something's brought up, because it's often we're in a rush. Have a conversation about what that is exploring. Go below the surface words when it comes up, because too often somebody says something and somebody makes up in their mind already, “well, we can't do that because of ABC”, and they haven't really explored what the issue is. There's often, not always, but often something more behind it. And if you take a little time to work it through, the researcher may understand it. And sometimes the solution may look different than both of them might have thought initially.
Anna
I love that Donna. When I was comparing your report to our Future Direction study, which was really the kickoff for this entire podcast, there was a lot of overlap. I was really excited about that, and I really loved how you named your levels of impact differently, but they were very similar. Your storytelling also brought in the patient perspective at a much richer level than our study did. And so for me, a lot of the take home messages were already things that I had been thinking about. But in addition to the ones that you've mentioned today, two other ones that really stuck out to me were things that Roger Stoddard, my original patient partner who was also part of this podcast, originally had brought up too. The importance of bringing the whole person and considering patient partners in terms of their whole self. And I also liked the area that was devoted to communities of practice as well. So I'm wondering, before we move into the wrap up of this episode,
Could you speak to your findings related to the importance of bringing in the whole person when engaging patients, or to your findings about communities of practice?
Alies
With the focus groups in particular, we focused on what people wanted to see more research on in the future. And there was a lot of talk about research on people as whole people. So bringing together the social determinants of health, bringing together the physical and mental health and so on. So a lot of the different suggestions that were made were all couched in the whole person concept. And I think we do need to go to that. With technology and so on, we're going to get to personalized medicine. That groundwork needs to be done so that we can get to personalized medicine effectively.
Donna
I want to add here another another slice on that. What we did see in the data very clearly is people talked about, “I'm more than my health condition”. When I participate as a patient partner, I bring a whole set of what you're saying, the whole person's life experiences, whether they be professional skills, personal, like a whole series. And that is something that at times is maybe not not appreciated. People want to be seen as bringing the package because it isn't like hiring a plumber to come in and fix the plumbing. We're more than that. We are coming in, in a sense, I don’t want to say as a contractor, but you get that person. And the other one, you mentioned the community of practice. We did have a lot of data, again, this is validating. People are are thirsty. It doesn't really exist today at all. PAN is a community of practice, and I know we've seen and we have data, there is tremendous value in having communities of practice. But even in our model, when we partner with organizations, we've created communities of practice to support that in parallel. So we heard in the data that people are looking for peer to peer — it is something that has not been tapped into and has significant value, and people are looking for that. So there's educational support from the research institution and researchers, that people are interested in, but also the support and value of learning from the peer community, which is a different type of support.
Anna
Those were definitely my take home messages from those sections as well. Both in terms of the whole self:
when people bring in patient partners, they should take the time to learn about them, find out what their other experiences are, where perhaps they volunteered, what they did professionally, and then ask them whether they'd be interested in bringing forth any of that to the current research endeavour.
I also liked the idea of the whole self in terms of progressiveness, as you were speaking to Alies about future research directions. As all of our tax dollars are being stretched more and more, we need to starting to think about health research, and also combining it with social services and social prescribing. I think that's another potential avenue where patient partners can really help to contribute to. Because oftentimes, or depending how you set up your recruitment, you will draw on people who have those experiences and they can help you better connect the dots about how that can apply to your current research as well.
I know in previous episodes and in general, I keep suggesting to patient partners to reach out and to join the Patient Advisors Network and to really have that community. Because not always will you necessarily get along with the patient partner you may be working with on a project, or you may be alone and you don't know whether what you're experiencing within a group is normal. It's easy to doubt yourself. I've heard from many people who are part of your community that it's very validating because, as you had it written in your report, your community of practice seems to be very action oriented. So it's not people necessarily sitting around and complaining, as was also what I read in your report, but it's people trying to figure out how to optimize their experiences and optimize patient engagement in research as well. So I would definitely recommend any patient partner out there to try to connect with the Patient Advisors Network. And for the academic researchers, you can also recruit patient partners through the network as well. There's a form on there that's super easy to fill out, and it can help you branch out or into the world of patient engagement as well, and access more diverse groups that you may not be engaging with as well. So as our wrap up question, I'm wondering, well, there's two actually:
First, is there anything else that you'd like to share about the report or patient engagement in research in general? Second, what are the key takeaways that you want people to leave with and that are really applicable to the patient oriented research they're either conducting right now or thinking about getting into?
Alies
I think people need to challenge their assumptions. That would be the big takeaway I would get from this. Challenge the assumptions you have about about your work, what you value, how you approach people and so on. And I would say that goes for not just the researchers, but also for patient partners, because those of us of privilege, sometimes we are not as open to those of our colleagues who don't have the same privilege and can't talk the same academic language. And there can be a bit of distance there that shouldn't be there. And I think for those of us who have some degree of privilege and have some experience and comfort in the research world, we need to look to mentoring and helping those of us who don't have as much experience because it helps jumpstart the comfort and the ability to really contribute. I know the first few research projects, my contribution was probably marginal compared to as I got more experienced and I felt more comfortable and became more mouthy and so on, I think my contribution was a little bit more robust and so it makes a difference. You want to get the training wheels off as fast as you can. One way to do that is through is through mentorship, becoming part of a community, feeling comfortable with what the norms are for patient/caregiver partners in research. Understanding what can we expect, what expectations should we have of our of our colleagues, and how do we help them set expectations we can all live with? Those kinds of things.
Donna
I hate just saying one thing, but I do think the relationship building. On a very short term basis, everyone can take a look at those relationships and taking the time. I think a lot of time assumptions and biases get strengthened by not having a relationship. It's easy to stay in that small space. It's isolated. So spend the time with people, getting to know them and working through things that would be key. The the other piece is, I guess, going back to the beginning, to think about opportunities to have more patient partners leading things or giving them room to take a different role and engaging earlier in research. Tied to that is transitioning from having one person or even two, where possible, to have a group of people, as many as possible. It just it changes. And it may be having to rethink how we approach patient engagement, patient partnership. What that looks like and opening up to considering different models. Maybe there's not one model but looking at different, different ways to do that.
Alies
So if I can just piggyback on that because Donna is absolutely right. A lot of what happens in the research teams is the communication and the relationships are role based as opposed to relationship based. So we need to move from role based to relationship based, which is my way of summarizing what Donna so eloquently said. But Donna just touched on something that I think we can maybe put more of a stake in the ground, and that is, we need to be involved in all levels of research. I'm thinking particularly priority setting. The one thing I really felt from the conversations we had in the focus groups, for instance, is that people really want to see certain types of things researched because the world is changing. Particularly:
Climate change,
Artificial intelligence, and the
Whole person piece came out.
Those were three very strong areas that people felt should be researched. And how can we ensure that if we're not at the table setting priorities? So that's one part. And I think we also should be part of the co-design that needs to happen to change the whole research process. To start off with one area in particular I'm thinking of, and Donna and I've had some conversations about this, are the grant reviews. I've done grant reviews and shoot me. They take me 3 to 5 hours per application and it's very onerous work. It's not work that any random person can do. Is there a way that we can review grants as patient/caregiver partners that doesn't require that we sort of pretend we're like academics going through the papers with the same lens. So I think there's some good challenges we can bite into, and I would look forward to it going forward because I'm sure there's more we can do.
Donna
I totally agree with what Alies said. There's an incredible amount that patient partners can contribute and how we access that has an impact on what we get out. So it's not downgrading the process. It's not about simplifying and changing the language. It's way beyond. It's the mechanism and the way we do it to bring out the best and get that contribution.
Anna
That's a great way of putting it. And that's something when I work with patient partners that I like to frame it as — or now I do it with students or anyone that's new to me — it’s what supports can I give and offer you in order to help ensure that you are contributing to the maximum potential that you would like to contribute to? And I think it was Albert Einstein who said that if you judged, was it a fish, by its ability to fly then the fish would go through life thinking it was stupid. But it's exactly that as well. And we should look at ourselves. It's about creating environments in which people are supported to shine to the abilities that they possess. So I think that's a really great note to leave on.
For anyone who's really interested in the patient engagement and funding area, another great place to start is to listen to our podcast with the Canadian Cancer Society, or to check out their work through their website as well. I can't say enough about this group and all of the innovation that they're bringing into this sphere as well. I am a very, very huge fan.
For anyone who's interested in reading the Reimagining the Research Landscape report, we'll have it posted on the Substack for this podcast, and it's also freely available on the Patient Advisors Network website. So right when you log into their website, it's there front and center.
Alies and Donna, thank you so much for coming onto this episode. I truly value any time that we get to spend together, and I always learn something new from your perspectives on patient engagement in research.
Before we wrap, I'd like to remind our listeners to check out our website asperusual.substack.com, for resources from today's episode, as well as 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. If you'd like to contact me, you can reach me at anna.asperusual@gmail.com. Thanks so much for tuning in and until next time, let's all keep working to make patient engagement in research the standard or as PER usual.