The following is the transcript for a keynote I gave April 21, 2022 for the annual Parkwood Institute Research Day.
I’ll start with who I’m not: I’m not an academic, and I’m not employed in healthcare. I’m also not currently a partner in research or otherwise perform any roles as an engaged patient – but I do think a lot about engagement and partnership, because of a variety of lived experiences.
It all started with the intensive, extreme caregiving of my son. Owen had multiple severe disabilities all his life, and died at the age of 12 in 2010. So I have the lived experience of a caregiver – someone who has had intensive encounters, as a parent, with Ontario’s acute healthcare system, special education, and pediatric rehabilitation.
During Owen’s life and for a while after his death, I participated in many advisory panels, research projects and engagement activities… so although those experience aren’t current… I also have lived experience as a patient partner, in research and other healthcare spaces.
I published a book about my life with Owen – it’s called No Ordinary Boy – it’s available on amazon but if you go to my website you’ll also see I’ve made the PDF of the book completely free to download.
The book isn’t so much a classic memoir as it is a dispassionate account of the absurdities and paradoxes and contradictions that I experienced as a parent, grappling with my child’s severe disability, his deafness, also managing school, and life in continual rehab mode – which was always about measurable goals, outcomes, improvements….
I wrote the book shortly after Owen died… and looking back I recall it as a really special time. There were a lot of speaking engagements, connections with other parents, and I got to inhabit our former lives again, from a different vantage point. So as an author, and a speaker – a storyteller – I was an active part of an engaged parent community, where it’s our ‘stories’ that bonded us. There was a sense of taking what I know, what I’ve learned, and applying it to help others. Plus, there was a sense of shared identity. Not unlike other engagement and partnership experiences. I think of it as a rich community-based lived experience.
But at some point, things started to change for me…
Like many others who travel this kind of road, I felt this experience was starting to hold me in a place I no longer identified with. The continual storytelling felt like a performance, and that audiences were expecting something specific from me. Especially in the conference context, where I was ostensibly there to educate professionals, I felt I was fulfilling a pedagogical purpose I didn’t understand. Not because it was confusing but because it was never articulated to me what exactly what I was there to teach or demonstrate… I felt I was on display to perform emotion or tragedy or overcoming… applause at the end only added to my discomfort.
So eventually, my talks became less story and more critical reflection and analysis. I eventually decided to pursue a master’s in bioethics, which was really the start of a more organized pursuit of understanding how we think about health and healthcare. And that includes how we think about engagement and partnership. I’ve been hanging out in this subject matter ever since.
In the last few years I have co-authored several papers and book chapters, delivered multiple keynotes (like this one), and now co-host and co-produce a podcast called Matters of Engagement with Emily Nicholas Angl – where we really dig deep into assumptions about patient engagement and partnership. I was granted funding by the Ontario SPOR SUPPORT Unit to get the project off the ground and we are now a going concern on our own. To date we have produced 28 episodes and have interviewed dozens of people about their research, experiences, and insights across the spectrum of engagement and partnership activities.
Which is all to say: my talk today is informed by a vast array of not only my own experiences and training – but the experiences and ideas of many others – all the people whose work I’ve been reading and who Emily and I have been interviewing about engagement and partnership – in research certainly, and also health service delivery improvement, community health services, and health policy. I’ll be drawing on all of this and attempting to synthesize some of what I’ve learned.
“Partners in Research: a critical exploration of roles, responsibilities and rationales”
So: “Partners in research.” Now to be clear it’s not any old partnering – like between clinicians and managers. Or researchers and funders. It’s partnering between professional researchers, and who we call people with lived experience. So that includes patients, service users, friends families and caregivers, other members of the public…
People sometimes hold dual roles, or wear different hats for different projects. But let’s keep it simple for today’s talk. And also for the sake of clarify I will be referring to people with lived experience simply as ‘people’ or ‘partners’ depending on the context. And forgive me if I slip and say patient partner on occasion.
I promised a talk about roles, responsibilities and rationales, and I do touch on all of those things 😊 But the real thrust for today is the ‘critical’ part.
If nothing else I say is memorable, that’s okay. What I really hope to impart is the importance and even necessity of even occasionally challenging and interrogating our deeply held assumptions and beliefs about what it is we’re doing.
Many of you, I understand, are practitioners of research – meaning you are involved in the ongoing practice of conducting research, in any and all its stages and phases, in a variety of disciplines. Researchers and partners alike are often involved in more than one project at a time, and may have different levels of involvement or commitment to different projects. So there are a lot of moving parts, a lot of interaction, a lot of interpersonal dynamics at play. So it makes sense that we spend a lot of time and energy thinking about how to do this partnership thing well.
Examples of things we try to nail down, include: project roles and responsibilities, compensation, authorship, accountabilities, rules of behaviour and conduct, confidentiality – all the things that come with people working together. And it’s not simple. Reasonable people may have differing ideas about how to go about things, and so there’s some negotiation involved, as well as establishing some ground rules.
These are important details to work out. Partly because it makes things go a whole lot more smoothly. But also because there are potential risks and harms.
We strive for partnership that is considered meaningful, or what we call “true” partnership, or where we call team members equal partners… but in reality – you may touch on this later in the conference – it’s a rare project indeed that has anything resembling power sharing, or where the virtues and benefits of the partnership accrue to all team members equally. So with this power imbalance ought to come a lot of careful work to ensure that potential risks and harms are at least acknowledged, hopefully minimized. So in addition to general terms of engagement, there is increasing time and energy spent on negotiating these ethical dimensions as well.
Now everything I just mentioned – these are all things play out ‘on the ground’ – where the work of engagement and partnership take place. And it’s where we put most of the focus, in terms of metrics, assessment, evaluation, improvement, innovation.
All of these things together in my mind, help to form a picture of what I’ll just call ‘contemporary notions of partnership’ – which is to say that it’s organized, institution-led, has a lot of embedded ‘human resources’-type guidelines, and is increasingly becoming a de facto part of health-related academic and organizational activities.
There was a time I also thought a lot about these things. But these days, I mostly dwell in a different place – from a more zoomed out perspective – where I contemplate these on the ground activities as scenes within much larger system, where there are all kinds of factors that shape and influence what’s happening. I’m referring to spaces where decisions get made about funding priorities and criteria, allocation of resources, leadership and staffing appointments, and strategies related to the political currents of the day. These other things that are happening are often just out of view, sometimes way out of view – further upstream, or perhaps streams over.
So, from this birds eye perspective, I’ve come to really appreciate that partnership isn’t a spontaneous activity or a magical activity, where researchers and partners somehow find each other in common cause. I see the increasing institutional investment in partnership – in its contemporary form – as a phenomenon, and it hasn’t emerged out of nowhere, or in a vacuum. So I wonder about the forces that helped create it, that benefit from it, and that seek to promote and expand it.
Why is critique hard to hear?
I find that when I do this – when I launch this inquiry and use these opportunities (like this keynote) to think out loud, I can get mixed reactions. Some people have said that what I say feels like a relief – like I’ve named a discomfort some are already aware of but haven’t named yet. But it can also be irritating even triggering to hear someone poke holes in or challenge the very premise of partnership.
And I can think of a couple of reasons why:
- Identity: I mentioned in my own background feeling very connected to my identity as a caregiver, as a patient partner at times, as a storyteller. I understand why sometimes people are moved to tears when describing how they feel – being heard, seen, included, their experiences and ideas valued. A sense of contributing to something important. When partnership goes well, people feel validated, connected, it can be a healing experience. When partnership goes poorly, people feel hurt, disillusioned, even angry. This doesn’t sound like a run of the mill volunteer role. Personal investment is high, and so there’s a lot at stake. Critique can be seen as undermining the efforts of people who mean well, for whom this is highly important.
- Momentum: in some respects we think of partnership as maturing, coming into its own. But at the same time people note that there’s a long way to go, that progress comes in mere inches at a time…… Certainly, people are aware that there are challenges and difficulties with partnership and that it’s far from perfect – but we should keep focusing on improvement, not critique, lest we slip backwards. We’ve also invested a significant amount of resources and good will trying to build capacity for partnership – in a sense, there’s no turning back.
I respect these perspectives and appreciate that not everyone will be interested in looking at partnership critically or reflexively. But there’s good reason to do so, beyond just having interesting thought experiments. If we give this a little bit of room… it may be helpful in at least explaining some of the tensions and paradoxes that do exist, which might be hindering progress. And it also might reveal blindspots, or inaccuracies in our perspectives.
so… thinking critically or reflexively… it means being willing to look at what else could be happening – in other spaces, to other people – beyond our own personal experiences. And taking our certainty, and making it uncertain, even for a short time. Maybe even just… one hour and fifteen minutes
So this is an invitation to think critically – about: the role of partnership in the wider health and health care system, to what and whom we are responsible, and the rationales we use to justify what we’re doing.
Each time I sit to write something about partnership I try to find a new way in, to answer the fundamental questions I still find so elusive, even after all this time… And these include: why is partnership seen as so important, why is it so valued? Well, this time around I now have rich source material to draw from. I don’t have to speculate by myself! So I entered this inquiry from a different place and wondered: how did this all start? Where did this move towards the contemporary version of partnership in research come from?
In our discussions, we heard at least 4 possible origin stories:
Possible origin stories?
- Evolution of ‘patient-oriented’: One version, through our interview with Vasanthi Srinivasan, the executive director of the Ontario SPOR SUPPORT Unit, is that it’s an evolution of the definition of patient-oriented research. If we are to orient research to patient needs we must therefore include patients on the research team. And in fact, Vasanthi and others at OSSU advocate for replacing the term patient-oriented with patient-partnered. (Patient-Oriented to Patient-Partnered: Aspirations, Implications, Challenges October 19, 2021)
- Patient rights: Another origin story, which we heard from several patient partners, is that it’s because patients have pushed for their right to be involved – partnership is the result of a patient-led movement whose time has come. This is where the rallying cry of “Nothing about us without us” finds footing – it’s a phrase borrowed from the disability rights movement
- Evolution of ‘patient-centred’: Another origin story came from a director of citizen and patient engagement, who said that it made the leap from clinical care – where notions of patient-centredness, patient autonomy, patients as partners in their own care were then expanded and applied to wider contexts.
- Based on participatory or community-based research principles: We have also heard partnership described as springing from principles of participatory or community based research and translated to the institutional setting.
These all sound plausible – I imagine there’s truth in all of it. Perhaps it’s a confluence of a number of rising social and political tides. And now that all parties- from patients to researchers to government agencies – everyone is developing programs, training, criteria, frameworks – well, I guess it hardly matters who or what started it. Which is maybe a useful framing, because it means these origin stories are malleable, and can shift and adapt to suit different contexts.
Looking to history is one way in, to understanding why partnership is so valued. Let’s put that aside for the moment and consider how we talk about it now – how do we explain why we’re investing so much in partnership, and what is the rationale? I know that individuals come to partnership for many different personal reasons and with many different motives and objectives – when I say rationales I’m not talking about individual reasons, I’m referring to the overall logical basis – the explanation – as to why people with lived experience belong in the research process.
I’ve chosen the two big ones to outline at this point.
Scientific: The scientific rationale says that patients know things that researchers don’t. Let’s leave aside the ongoing discussion about whether patients and partners are experts or not. What is argued here is that lived experience gives people a perspective that could be valuable, beyond just as study participants, as contributors throughout the research lifecycle. We might ask, valuable how…? well, perhaps partners will hear or notice something that would not have been picked up on in the study itself. In a collaborative role, it’s possible for new insights and direction to be provided by people who understand the lived experience of those who are being studied.
These are fair comments. But I know that, taken alone, partners can find this to be a frustrating framing of their contributions. If we use a scientific rationale only – one based on the potential for improved research outcomes – partners are still seen as informants, even if through dialogue, even if through a collegial arrangement, it still a data gathering exercise – although done in a non-scientific way.
The notion of partnership can get lost in the scientific framing. Who decides which points are relevant? Who decides which partners are involved? At what point are partners invited to bring ideas and comments? Who decides these things? It’s not commonly a vote – usually the PI decides.
Democratic: Another rationale is that it’s democratic, based on a variety of rights. There is a real weight to this claim – a gravitas that has the ring of fulfilling a public duty almost.
Includes elections, participation in society
In Canada we certainly have democratic rights and they’re expressed in our right to stand for office, vote and elect representatives. We also have rights to participate in civil society through any number of activities, like volunteering, and to participate in decisions that affect public welfare.
These are two common conceptions of what we mean by democratic rights.
For the most part, partnering in research is not a democratic activity in the electoral sense. Institutions or researchers invite people – sometimes specific people – to collaborate on projects. They are not opening elections or providing means for the public to select who is going to represent them in the research project. However it is certainly accurate to say that people have a right to volunteer and be involved in matters that concern them. But when it comes to conceptions of meaningful partnership, we can run into trouble here too.
Boothe K. (Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time. Health Econ Policy Law. 2021 Oct;16(4):424-439.
Katie Boothe, a political scientist at McMaster, authored a study called “(Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time,” in which she considers how experts think through public and patient involvement in technical policy processes, and she hones in on the tension between scientific and democratic legitimacy. The citation is on the screen and there will be a link in the transcript.
In conversation about her work, Katie noted that when parties come together with differing notions of legitimacy it can be a setup for a real mismatch of expectations and goals, and one of the ways that people who are sincere and of good intent may end up talking past each other.
I think this applies in the case of partnership in research, where it’s not enough for partners to be seen as mere data points, but it’s also not enough for partners to simply be present.
And yet, although insufficient, these scientific and democratic rationales are held up as core justifications for carrying on.
And I think this may go a long way towards explaining why there can be feelings of tokenism or box checking even as everyone is following an agreed plan. Or why researchers may, indeed, value the contributions of partners, but the partners themselves feel out of the loop and insufficiently involved.
These are not small issues. There can be a not-so-quiet discontent when people indeed, as Katie says, talk past each other.
And it’s not clear to me that these fundamental issues can be addressed in the scenes and locations where partnership is taking place. Rather, I think these issues originate much further upstream.
There are limitless articles and websites and conferences about the ideals of partnership – as well as the how-tos, but I think there’s an absence of a well-articulated vision of what partnership is supposed to accomplish, and what it should actually look like, beyond establishing nice relationships.
There seems to be both a strategy and communications vacuum, which has led to a proliferation of wildly different ways that partnership is understood and implemented.
Granted, as I mentioned there have been lots of efforts to stand up some kind of scaffolding to support the ideals that have only been very loosely articulated – these come in the form of tools and frameworks, guides and articles (many of which were written by patient partners), university-based training (to better integrate partners into the research process), as well as ideas around evaluation – there’s a whole industry being built up around creating support for partnership and it’s a bit of a juggernaut – an unstoppable force.
Honestly, I do sometimes wonder if I’m just pulling at threads that don’t warrant pulling. In fact some would argue that things are exactly how they should be – that there’s a democratic impetus to involve people, and now let’s work together to make it meaningful and impactful and even scientifically defensible.
It’s not an unreasonable view. But I pull on the threads nevertheless, because I think there are huge blind spots that relate to ideas of representation, and including a diversity of voices. Some of us wisely ask: who is at the table and who is left out? But for me, increasingly more pressing questions include: who made the table, and who says that’s where decisions should be made.
Emily (my co-producer) and I had a lot of conversations in the past year with people who expressed a need for diversity, better accessibility and wider demographic representation in partnership and engagement activities. The language varied, depending on the context: We talked about EDI – equity diversity and inclusion. We heard a lot about “reaching the hard to reach.” Words like disadvantaged or marginalized come up a lot. And more broadly, we heard about leveling the playing field, and working towards correcting power imbalances.
These can feel like complex concepts reduced to buzzwords – but to be fair they often came from an earnest place to try and make partnership more collaborative, more fair and more inclusive.
Leveling the playing field?
Let’s unpack this a bit:
Partnership should be more diverse
One common theme is making partnership more diverse, so that there are more varied perspectives informing research and research projects. This might connect with a scientific rationale, based on assumptions that a wider variety of perspectives will improve the work – and it’s this goal for more diversity that leads to fairly intensive strategies around recruitment.
I encourage you to take a look at the work of Paula Rowland, one of our very few repeat guests. She takes a critical look at recruitment in engagement practice – I’ll put a couple of links in the transcript to her episodes. Dilemmas of Representation, with Paula Rowland June 29, 2020; Webinar Extra: Paula Rowland presents Dilemmas of Representation for BPER November 2, 2021
Partnership should be more accessible
Another way we try to level the playing field is to make partnership more accessible, so that anyone who wants to participate, can. It’s a kind of open door policy. This might connect with the democratic rationale related to civic rights – people have the right to volunteer and participate in matters related to public impact – and this goal leads to improving outreach and developing non-discriminatory practices.
Partnership itself makes research more relevant to end users
And finally there’s the idea that partnership itself is a corrective – that there’s something transformational and even radical about people being invited into a space previously reserved only for experts – those experts being researchers and academics who are seen to be lacking perspective on how ‘real’ people actually live and experience illness and health. By integrating partners across the research lifecycle, the thought is that we’re ensuring that research is more relevant to the needs of the people we’re studying – the implication being: more improvement in health equity and health outcomes, and improved access to healthcare. And this is consistent with a turn we’ve taken in recent decades – we meaning Canadian health policy – towards a focus on translational medicine, implementation science, public uptake of research. It’s connected to our reframing of patients or service users as customers. Research and academic activities increasingly need to be justified as being useful and translatable to something of value to end users – whether conceptualized as patients, health care providers, students, taxpayers, the public.
These are really deeply held beliefs about the potential role of partnership in a wider societal project to make health and healthcare more equitable and accessible. But in keeping with the critical perspective – any seemingly irrefutable moral argument, I think, deserves a good hard second look.
Some critical ideas:
So I’d like to share some of the critical ideas discussed in our interviews, and introduce a little of that uncertainty I spoke about earlier.
Diversity ≠ equity
Nav Persaud is the Canada Research Chair in Health Justice and a physician at St. Mike’s in Toronto. Our conversation with him reoriented how we think about diversity. Diversity in and of itself is often window-dressing and can be quite far removed from actions that support equity or removing discriminatory practices. Through many examples Nav convincingly explained that diversity does not automatically equal equity, and in fact ‘diversity programs’ often deflect from inaction and continuing harms. As Nav said: “Who benefits from talking about diversity? It’s often not people who are affected by discrimination.” (Equity, Diversity, and Patient Engagement – with Dr. Nav Persaud November 16, 2021)
Engagement requests can drain energy from communities
We also spoke with people who identify as members of a community and recognize that contemporary engagement and partnership do not serve their needs, and in fact may cost them something.
- Lucy Costa of the Empowerment Council at CAMH described how the integration of people with lived experience into organizational roles can erode the work of advocacy. (Democratic patient-led councils, the rise of patient engagement, and the erosion of advocacy – with Lucy Costa July 6, 2020)
- Alpha Abebe and Rhonda C. George – researchers studying Black community engagement – noted that Black communities already know what they need and find little value in participating in organized partnership efforts – particularly in spaces where Black community needs are not prioritized. And yet, when invited, Black community leaders feel they can’t say no. (Health Policy Series: Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George June 16, 2022; Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George June 7, 2022)
- Jenn Broad and Paula Tookey, who work in supervised consumption and harm reduction, shared the importance of community members electing their own leaders to represent them in matters of interest. Plucking people out of community to participate in diverse settings can be ineffective for addressing community needs, and worse, could be harmful and stigmatizing for the individuals. (Engagement in Context: Reflections from Jenn Broad and Paula Tookey of the South Riverdale Community Health Centre December 20, 2021)
These are just a few examples of how contemporary institution-led engagement and partnership activities can drain energy from communities and may work counter to ideals about improving equity in health and healthcare.
Participatory and community research don’t translate well to institutional contexts
Lori C. Ross is a researcher at the Dalla Lana School of Public Health – we learned from her work that principles of community-based or participatory research don’t easily translate to institutional settings, as projects are heavily constrained by bureaucracy and power hierarchies. It’s maybe easier to maintain the principles in spirit rather than in actuality. (Discussing Failures in Participatory Research, with Lori Ross December 13, 2021)
Vagueness of language can help to maintain the status quo
Amy Katz and Melody Morton Ninomiya, researchers who wrote about use of the word “vulnerable” in public health research – call attention to vagueness of language, and how it serves those in power to stay in power. They also discussed how vagueness of language leads to vagueness of action – which all serves to remove accountability. (Vagueness of language, unarticulated assumptions, and maintaining the status quo. With Amy Katz and Melody Morton Ninomiya November 22, 2020)
In our discussions about equity, diversity and other related concepts – we heard a lot of good intentions, but a lack of specificity, lack of strategy, lack of commitment to change.
Partnership and engagement are rife with paradoxes and constraints – and many acknowledge that the work is not easy. But there is always an underlying assumption that it’s ultimately good, and the right thing to do. These critical ideas are direct challenges to that.
And they’re not just “ideas” – these are people, telling us that contemporary notions of partnership and engagement cause harm, don’t represent community interests, continue to reinforce the status quo.
We spoke earlier of scientific or democratic rationales –
so we now possibly have a 3rd one –
which is “moral and ethical”. I think it’s possibly the most problematic one, as a critical look reveals potential harms that we cannot see when we bring our attention only to the ‘on the ground’ activities.
Some of the critical ideas I brought forward can be hard to reconcile. Even though indeed, many people enjoy partnering in research and find that the research project itself may be improved – it may also be a way for those who benefit from the status quo to keep things the way they are. ….and despite efforts at diversifying partnership and engagement activities, communities who have historically been excluded from receiving equitable health care, remain on the outside, not benefiting from these contemporary partnership approaches.
I say this is hard to reconcile because what I just described? It typically doesn’t jive with the experience of those who are actively engaged. The ideals that infuse partnership with its sense of virtue – they seem obvious, important, maybe even an expression of what it means to be Canadian.
Partnership embodies a number of ideals like:
- Expression of democracy: a commitment to democracy, right to participate, individual rights
- Patients and the public as consumers or customers: a redefining of patients and the public as consumers or customers
- Multiculturalism: support for multiculturalism and diversity and new ideas….
- Innovation, relevance: particularly in support of improvement and innovation and relevance
What I’m describing here is consistent with “classical liberalism” –
which among other things, assumes that everyone is starting from the same place and everyone deserves an equal opportunity – and which is silent about things like the ongoing legacy of historical oppression, or the fact that some groups disproportionately experience disadvantage. Some hold liberalism responsible for the growing health disparities and inequities we see today, as well as our collective unwillingness to actually address it.
I’m not a political scientist and so I’m going to step back from this particular ledge…! I realize this is not a perfect comparison…
But drawing a connection between the ideologies of partnership and liberalism may help explain why the benefits of partnership are not felt by everyone, and why for some, institution-led efforts at engagement and partnership may feel like… just another mechanism of exclusion from a health system that wasn’t built to include them in the first place.
Okay, so… we’re nearing the end, and you might be wondering… well, now what?! I know it’s Research Day and I’ve taken you through quite a meandering journey – maybe one you didn’t expect – and I want to thank you for bearing with me. Let me see if I can reign this back in.
The point of this session was to critically explore partnership in a way that makes it uncertain and unfamiliar, in order to paradoxically… see it more clearly. This doesn’t mean we drop our tools and go home. It means we should confront those paradoxes, proceed in the knowledge that even if we feel certain things are beyond our control, we can perhaps minimize harm in the spaces we occupy.
As you move through today’s sessions – whether you’re discussing dynamics of power, research with indigenous communities, or integrated knowledge translation – well, you may wish to park these ideas for now, shift gears, focus on the topics at hand,. Which is not to discount the importance of doing so. Critically-minded researchers of engagement like Paula Rowland and Julia Abelson… their work suggests that if we’re going to undertake this project of partnership, we owe it to all involved, to do it respectfully, to minimize harm, to contribute to the work with integrity.
But I invite you to consider keeping another channel open. Allow a critical curiosity to seep in, where you can become aware of ambiguities and discontinuities, notice what stories are being told and for what reason. Claims of equity and fairness? You could listen with a different ear, see if they ring true. Perhaps trace where the power and the money flow.
I realize it can be a tall order, to carry around a critical lens when you just need to get stuff done. But maybe think of that lens as part of a reality-check toolkit you can pull out on occasion – one that includes doubt, curiosity and self-awareness – because critical reflection is also about examining our own motivations, and the stories we tell – to ourselves and others.
I realize I’m not leaving you with terribly practical recommendations for improvement. But I have no doubt that it’s only by critically engaging – by honestly reckoning with all of the possible realities, not just your own… that new pathways can open and real change can happen.