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“Partnering in Research: Making a case for critical reflexivity” – keynote presented at Western University’s Faculty of Education Research Partners Day, April 2024

The following is the transcript for a keynote I gave April 19, 2024 for Western University’s Faculty of Education Research Partners Day.  Western recorded a video of the event. 

We’re here at the Faculty of Education’s Research Partner Day – a day to celebrate and showcase the community partnerships Western has fostered, and hear how some of this work has yielded fruitful relationships and important insights. It’s an honour to be here, and thank you so much for welcoming me as today’s keynote speaker.

We have a bit of time together which is great because I have a lot to share with you.  I’m going to wander a bit but I promise to connect the dots by the time we get to the end! 

The experiences and insights I’m bringing today are actually not from an education context, but rather from healthcare – I’m going to stick with what I know, but I imagine there’s a lot here you may recognize from your own work. So as you’re listening, keep what makes sense, discard what doesn’t, and at the end I’d love to know if anything resonated with you.

Regardless of the field of study, research institutes and universities tend to be very excited about partnering with communities in research. It can be gratifying to bring academic knowledge and methodology to groups who have important questions they want answered, or problems they want to solve. And of course, researchers and students have research and publishing objectives which partnerships can help to facilitate.

When it goes well, community organizations – and the people they represent – can benefit immensely. And today’s showcase demonstrates how partnerships can be mutually rewarding.

In my experience though a couple of things often just go unsaid. One is that … well… things don’t always go well. Sometimes we know why. But sometimes we don’t – those are the moments I’m interested in. Also, more and more, I’m noting that even when things seem to go well, we might be missing a larger perspective.

So even as we celebrate fruitful relationships, perhaps we can take this hour to really think about what brought us to the moment, and some possible implications of what we’re doing.

BACKGROUND

I’d like to first give you some context to explain how I became so very interested in thinking about research partnerships in healthcare. Because it’s maybe a little niche. I had a son, Owen, who was born with multiple severe disabilities. In this photo, I didn’t know it yet.

His disabilities actually revealed themselves rather slowly. Throughout his early months and years, Owen consistently fell short of developmental milestones. And at some point it became clear that his growth and development couldn’t be measured  on standard charts. Owen was deaf and non-verbal, couldn’t sit or walk or even hold himself up. He couldn’t gesture or indicate or otherwise communicate reliably other than through his facial expressions, vocalizations and emotional responses. He was g-tube fed, in diapers his whole life, required full support for all activities of daily living. His diagnosis was cerebral palsy, which was more of a catch-all that described his physical presentation, but it really had no underlying cause.

Despite all this he had a very full and I dare say fulfilling life – lots of family and community support, he and his younger brother were very close, and Owen simply delighted in his presence. And he had an openness to new experiences I rarely see… in anyone. Despite all his challenges Owen’s death at 12 years old was sudden and unexpected. And that was 14 years ago now.

I was his mother, of course… and his primary caregiver and advocate. I credit my good friend Donna Thompson with coining the phrase ‘extreme caregiving’. Makes it sound kind of adventurous, doesn’t it? But I would say that’s about right. I was an extreme caregiver. And this experience as an extreme caregiver is the foundation to my becoming what we call in healthcare an ‘engaged patient’ or in my case, an ‘engaged caregiver’.   

Even just in healthcare, ‘engaged’ can mean different things in different contexts. Being in ‘engaged patient’ can sometimes refer to engaging meaningfully in your own care. In my bioethics training, we thought about things like shared decision-making, informed consent, personal values and priorities. I’m not talking about that kind of engagement, at the point of care.

I’m talking about more formal programs of “patient, family and caregiver engagement” that are more systemic and systematic. Search any hospital website for the word ‘engagement’ and you’ll find extensive programs, approaches and guidelines. These institutional programs of engagement recruit patients, families and caregivers to participate in a number of activities, which can include:

  • Service delivery improvement
  • safety and health standards
  • peer support
  • medical education
  • health and healthcare policy making
  • and of course, research design and implementation – where patients are recruited not as subjects or participants but as co-designers, co-investigators and lay advisors.

I listed them all together but they’re distinct arenas from each other with different roles and responsibilities for patients. The commonality is that the perspectives of people with lived experience are seen to have been missing from these formerly exclusively academic and professional spaces.

So there I was, a person with lived experience of extreme caregiving, dedicated to my role, to advocacy, and… I was also available, articulate, I was an early blogger and so already primed, I guess, to talk publicly about my experiences. 

Because of all this, I was frequently called upon to tell my and family’s story – to share my anecdotes and insights with health professionals and other caregivers and patients. I was also invited to sit on advisory committees, participate in focus groups, to give feedback on hospital services and policies. I was also invited to contribute to provincial healthcare policy development and to join research teams in the planning and execution of patient-oriented research.

“Engaged” indeed.

After many years of involvement in this way, I recognized some patterns:

  • More often than not there was a lack of vision and unclear objectives as to the purpose and role of including patients and caregivers in these activities. Sometimes we were asked to comment on things already underway, with little chance of having an impact. I was asked to speak to professional audiences but it never mattered what about. On committees, often it felt like we had just enough time to make introductions, learn about the program of research, have a little snack, then congratulate ourselves for the good work we were doing. While it was nice to get out of the house and meet people, it all felt superficial.
  • Even if the engagement felt like it had substance there was rarely follow-up or feedback – I had no idea how my comments were heard or integrated or implemented, if at all. Maybe it felt useful, but was it?
  • And notably, I found it was the same people being engaged, over and over again. We all noticed it, and jokingly called ourselves “the usual suspects”. We were like this transportable, pop-up volunteer army deployed to, I don’t know… provide moral support… to the researchers and to each other.

It was a bit weird. It had become quite unclear to me what this was all for, and why we were being asked to participate in this way. As the excitement for engagement and partnership continues to increase, I’ve become quite curious about this whole phenomenon.

Okay, so that’s me! Let’s talk about you.

Whether you’re a student, a community partner, or an academic and researcher, the practice of conducting research is a multi-faceted effort with many moving parts.

Even more so when you’re partnering or collaborating. We would hope of course that each partner’s objectives are in alignment but often there can be competing interests and other matters we need to resolve. So we have to negotiate or at least navigate diverse interests and complex interpersonal dynamics.  It makes sense we spend time and energy thinking about how to do this partnership thing well. 

Some of the things we might focus on include roles and responsibilities, remuneration, authorship, accountabilities, confidentiality and trust – let’s call them “terms of engagement” – all the things that come up when people work together with other people. And it’s not simple. Reasonable people may have differing ideas about how to go about things.

We also strive for partnership that is considered meaningful, what some would call a “true” partnership, where team members are considered equal partners… Good aspirations – but in reality, it’s a rare project that has true power sharing, or where the benefits of the partnership are felt by all team members and organizations equally.

So with this power imbalance ought to come even MORE careful work to ensure that potential risks and harms are at least acknowledged, hopefully minimized.  So in addition to terms of engagement, we spend time and energy on negotiating these ethical dimensions as well.  

And we need a lot of structure to contain all this administrative, interpersonal and even political work.

You all would know this better than I do:  it can take many months and even years to get this stuff sorted before the research even starts. 

It’s not surprising then, that sustainable research partnerships require a high degree of organization, institutional oversight and guidance, and HR-type rules. They’re like mini-enterprises unto themselves.

All of these things – terms, ethics, administration – these are all things play out ‘on the ground’ – most of the study or research about engagement and partnership is about these things. How to make them better.

I talk to a lot of people and organizations about their research partnerships – and I find they tend to be romanticized a bit.  Community partnerships are described in ways that make them sound communal, participatory, equity-seeking maybe? But are they?

We’re so focused on tactics and boundaries and objectives, it can be easy to forget or not notice things like… where power lies, who holds access to money, who benefits, what’s at stake for whom. 

Investment in academic and community partnerships continues to grow and expand. And it might seem like an obvious or natural evolution. Times are changing, we need to collaborate more. But we know from political science, critical management studies, social and cultural anthropology – a host of other fields – that when institutions are invested in a movement, it may have to do with more than just serving the public good.

I know that research partnership is a very specific area to turn a critical eye, and you may wonder, why bother? I’ve wondered this myself, because sometimes I feel like I’m throwing a wet blanket over people’s sincere desire to do something good.

But I’ve realized it’s really as good a site as any to interrogate how power works to stay in power. And how institutions invest in the status quo by absorbing and even diffusing good will and energy for change – yet signal otherwise.

LIVED EXPERIENCE

I said earlier that I didn’t know why I was being invited to all these engagement activities. In hindsight now I think I do know why my presence was wanted even though I had hard time seeing the value. It’s because of that much revered “lived experience”, which is increasingly in demand at all kinds of decision-making and policy tables.

There is a strong impetus now, often mandated, to include people with lived experience in many forums, including your own research contexts, I imagine. And the imperative is not just to make that happen… but to BE SEEN to have been making that happen. It’s a kind of validation mechanism in healthcare, where saying “we consulted with patients” helps to shore up support for organizational decisions.

There’s been a lot written about lived experience, its value and meaning, and whether it counts as expertise on par with professionals. I ponder this a lot – just because I’ve lived through something does that make me an expert? More importantly, does that make me well suited to advise others or to represent others? On its own, I don’t think so.  But this notion of patients as experts is hotly contested so we’ll leave that question aside for another day. But we can look at the stated rationales for why including people with lived experience is seen as important.

Generally, the reasons fall into 2 buckets: scientific rationale, and a democratic rationale. 

The scientific rationale is that people with lived experience know things that researchers don’t. They might hear or notice something that would not have been picked up on in the study itself. In collaboration, it’s possible for fresh insights to be provided by people who understand the lived experience of those who are being studied. 

Another rationale is that it’s a vital part of our democracy – that we have the right to involve ourselves in civil society and to participate in decisions that affect public welfare. So it’s democratic not in the voting and election sense, but in the participatory sense.

Anyway… regardless of rationale my own lived experience of engagement and partnership has been rather underwhelming. Granted, my experiences took place many years ago… Today, the landscape of engagement in healthcare has evolved in substantial ways.

It’s now actually kind of an ideology, in my opinion – with its own inscrutable logic and unquestionable taken-for-granted truths about the benefits.  I say taken-for-granted because there is in fact very little evidence to support claims that enrolling patients (or people with lived experience) in any of the ways I described actually improves science, research, or service delivery. Even if we focus only on the democratic rationale there not nearly enough accessible opportunities for the general public to participate in research for this to be real.

These rationales are rather grand and vague, hard to assess, hard to quantify. So in terms of measurement, we stick to the tangibles, the stuff we can see.  

Assessment and evaluation of engagement initiatives tend to focus on the terms and ethics and administration, rather than whether the scientific and democratic rationales prove to be valid. For example, the success of an engagement is often determined by the frequency that patients were consulted and at what stage of the research. As opposed to whether patients made a positive or notable difference to research or health outcomes.

So of course to support this work we have… frameworks!

There’s a lot of infrastructure that’s now scaffolding things up. Communities of practice, governance frameworks and institutes focused solely on patient-oriented research.

To manage all of this we now have a new layer of middle management in hospitals and research institutes – the engagement practitioner. And there’s the professionalization of patients themselves, who can take certificate programs on how to contribute effectively to health and healthcare research. Often these professionalized patients become engagement practitioners.  Engagement begets more engagement.

It’s such a juggernaut, making its way through all aspects of health care, health research and health policy.

As an observer and analyst of this phenomenon, I find the longer I scrutinize and contemplate all this… the more bamboozled and muddled I get. And I think it’s because patients enter the space thinking one thing, but in reality it looks very different.

As things become more and more routine and programmatic and bureaucratic, at the same time we maintain the illusion of engagement as a disruptive form of advocacy, a way to speak truth to power. It claims to amplify marginalized voices, to address health inequities, to be more representative and responsive to the needs of people in Canada. “Nothing about us without us” – engaged patients say this all the time.

It’s the language of community, of disability activism, and it has seeped its way into this very institutional context, but – and here’s the key – without an organized or politicized or patient-driven agenda.

WHY AND WHY NOW

So I’d like to bring forward a couple of interconnected questions. Why, and why now?

One answer is RELEVANCE.

RELEVANCE

In research, pursuing relevance means trying to make a meaningful difference to the people for whom you’re doing the research in the first place. Ideally, solving a problem or addressing a need. So through the lens of relevance, having the potential end-users involved up front and throughout a project, even forming the research question, makes sense.  It’s classic user-centred design.  

But let’s walk through this a bit. We can’t just assume relevance – we have to map it to something – like HOW and to what extent end users of research are going to be affected. So we need to measure and assess and evaluate.  

Then, once we get to something measurable, our institutions want to know – what’s effective? What produces the best return? What sorts of projects are too bloated or costly or inefficient?  On this basis, what should get funding, and what shouldn’t?  

Relevance has marketized the research landscape. Marketization is the introduction of market conditions, like competition and financial incentives and winners and losers – to formerly non-market arenas, like health care, government services, academia. Its successes are measured by merit and performance and profit, not equity or fairness or distributive justice.

This of course plays out in universities. In the quest for RELEVANCE… business studies and STEM get far more funding than liberal arts. Career and skills training are prioritized over literature and rhetoric. In health and healthcare research, RELEVANCE is what shifts focus from basic science and discovery towards technology solutions and health outcomes, with a focus on spread, scale, adoption, impact.

Many funders, including the Canadian Institutes of Health Research, the main federal funding source for all health research – require that researchers seeking grant money, account for how patients are going to be involved in or consulted throughout the research project, as a way to ensure relevance. I’VE been on grant committees. I can tell you that projects without patient involvement probably won’t get funded.

In some cases this may make sense. But there are many cases where it just doesn’t.

I was asked one time to provide a patient support letter and be on the advisory committee for a grant application described like this:

“We will investigate the effect of maternal gut microbiome modification in the folate-sensitive Splotch-delayed mouse model of fetal spina bifida. We will examine the effect of orally administered folic acid, vitamin B12, probiotics and combinations of these, on the incidence of fetal neural tube defects.”

This was basic science research on mice. I was asked to write a letter, from the patient perspective, to reinforce the relevance of this research to patients. I find this absurd. But it’s entirely common.

So it’s at this point people say, okay fine… but isn’t it still important to hear from people with lived experience, and for research to be relevant to those who will be affected?  

Yes, of course it is.

Before the rise of engagement over the last couple of decades, we learned about people’s experiences and preferences through many kinds of… research. Surveys, interviews, ethnographic research, focus groups, literature review – all evidence-based and methodological, with interpretation and guidance for application and meaning. 

Patient engagement doesn’t work that way. Rather, it involves self-selected volunteers who assign themselves the role of informing research whether or not their skills and contributions are useful or representative. And researchers are required to involve them, whether they know how to do so effectively or not.

POPULISM

So why is researching patient experience no longer sufficient, and why is it being supplanted by engagement and partnership?

In these politically complicated times, our collective trust in experts is low. Many people believe that trained expertise and elected representation (through our politicians) are suspect. Which is the basis for my second response to the why/why now question. The first was, because “relevance”. And another is because “populism”.

We see it everywhere, I think – there’s a rising sentiment that our elected officials, researchers and academics, public health experts, journalists, medical professionals, educators – all the ones we have historically trusted to sort the wheat from the chaff, and look after public interest and welfare – well, there’s a lot of distrust, suspicion that the so-called gatekeepers are out of touch with everyday people’s needs. 

There’s always truth in criticism, but I personally find this view dangerous and potentially explosive.  Now perhaps patients aren’t going to be demanding to perform surgeries on themselves any time soon… but there’s an aspect of this populist sentiment alive and well throughout patient engagement and partnership. I hear this explicitly: professionals are out of touch, in ivory towers, don’t understand patient experience, and patients should be able to not only insert themselves into research projects but even apply for and conduct state-funded research themselves.

Marketization, populism – in some circles these words have negative connotations but they’re of course just descriptive of our modern condition. And while we can critique it all we want, there’s almost nothing individuals on their own can do to change the culture, even if we wanted to.

But we can at least move through our work with awareness, transparency, generosity and kindness, and an understanding of how our experiences and environments shape what we think and do.

REFLEXIVITY

Here’s where reflexivity comes in.

Applying reflexivity typically is an individual preoccupation – developing an awareness (especially as a researcher) of your own assumptions, biases, privilege, social location and position – and seeking to understand how those things impact or influence the work.

No type of research or science – even if we’re talking about lab experiments with chemicals – none of it escapes the fact that it’s conducted by humans with all our failings – we have particular curiosities, specific world-views, carefully constructed personalities, and fragile egos. There is no purity or neutrality in any kind of scientific endeavours, especially in the social sciences. So making room for essentially your humanity and that of others, can help to bring people more onto the same page than they would be otherwise.

But I think the scope for reflexivity shouldn’t be bound only to the individual researcher or team, doing a self-analysis. We should also include analysis of the cultural, societal, and political forces that brought everyone together into the same space in the first place. We can ask questions like, if this goes well, who stands to gain the most? If it goes badly, who stands to lose? who holds the money and gets to make the decisions? What socially-constructed constraints and privileges are being reflected and upheld?

These questions have captivated not just me, but lots of researchers as well, mostly from the UK – they’ve had a much longer history of public engagement in health services than we’ve had in Canada, and they have a much stronger culture of social sciences critique of healthcare.

I’d like to share of that work with you here:

Ives et al

PPI – patient and public involvement – is the term for engagement and partnership in the UK.  This paper by Ives et al talks about how patients are valued for their lay perspectives but that they’re not actually useful until they’re trained and act more like professionals. The authors’ conclusion is that patients shouldn’t be trained or involved in the conducting of research because they see tensions is irreconcilable.

Gibson et al

This paper provides a robust policy analysis of engagement within the NHS and attempts to map what they call “knowledge spaces”

Essentially, this paper identifies a disconnect between what is claimed to be happening in engagement, and what is actually happening.

The claim is that engagement is open, transparent, pluralist

The reality is that the paid professionals manage the process to please their bosses, and run the enterprise as an extension of the business of healthcare.

Madden and Speed

This is a commentary piece that again looks at the stated imperatives for patient engagement.

In the end, they conclude that “patient engagement” is an empty vessel that is intermittently populated with policy trends.  They play with some fun metaphors – a zombie is a dead idea that still lingers. And a unicorn is a policy that mostly just exists in our imaginations.

The authors here suggest that engagement and partnership neutralize patients – keeps them occupied and placated through administrative projects.

Komporozos-Athanasiou et al

This paper looks at 3 ethnographic studies by these same authors, which investigated patient engagement activities in clinical areas of healthcare.

There were similar findings in all three studies that showed how the ‘ritual structures’ or routine practices of engagement – we’re talking about meetings, agendas, minutes – they constrain the degree to which patients can contribute.

They identify patient engagement as being nowhere near an equalizing force, but rather an expression of government or institutional ideologies.

Carter and Martin

And finally Carter and Martin: this was a multi-year ethnographic study that followed an advisory group made up of patients and the public. Like the previous paper, the authors note that meeting rituals and interpersonal banter made up the majority of the engagement time together. They implicate the whole proceedings as a rigged game, with no real intent to allow the group to influence what was to come next.

To be clear, none of these papers blame individuals as being bad or having ill-intent. They also don’t suggest that anyone is doing things wrong. They instead suggest that the very nature of institution-led engagement and partnership has a kind of inevitability towards ineffectiveness and maintaining the status quo.

Okay so that was all very academic and theoretical – all of that work was from researchers who study engagement and partnership. So what about the views and experiences of those who actually do community-engaged research? 

Over the past few years I’ve been co-hosting and producing a podcast called Matters of Engagement with my colleague, Emily Nicholas Angl. We’ve interviewed dozens of researchers, engagement professionals and people with lived experience who are involved in research.

I’ve gone through our episodes to find some common themes and want to share them with you now.

Probably the biggest overarching idea that we heard was this:

Engagement and partnership requests can drain energy from communities

These are just a few examples of how institution-led engagement and partnership activities may work counter to ideals about improving equity in health and healthcare.

Participatory and community research don’t always 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 projects are heavily constrained by institutional bureaucracy and power hierarchies – which can be deeply triggering for those involved. Particularly when the community-engaged or participatory research project is meant to address equity gaps. 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 can help to maintain the status quo, because nobody knows exactly what’s supposed to happen.
Our interview with Amy Katz and Melody Morton Ninomiya resonated with me because it helped me better understand some of my own discomforts with lack of strategy and specifics. They 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 serves to remove or hide accountability. (Vagueness of language, unarticulated assumptions, and maintaining the status quo. With Amy Katz and Melody Morton Ninomiya November 22, 2020)

Diversity ≠ equity
Nav Persaud is the Canada Research Chair in Health Justice and a physician at St. Michael’s hospital in Toronto. He writes about diversity in engagement and partnership, and how it’s typically a misguided effort towards equity in healthcare. According to Nav, diversity in and of itself is often window-dressing and can be quite far removed from actions that support equity or removing discriminatory practices. And in fact, ‘diversity programs’ often deflect from inaction and continuing harms. My favourite quote from Nav:  “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)

And finally:

Differing notions of legitimacy

Katie Boothe is a political scientist at McMaster – in her work, she hones in on the tension between scientific and democratic legitimacy in an engagement context.  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. (Boothe K. (Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time. Health Econ Policy Law. 2021 Oct;16(4):424-439.)

WRAP UP

As I said earlier this may feel like I’m throwing a wet blanket over everything. It’s really not my intention and in fact I find this kind of critical work quite exciting and holds so much promise for making things better. My goal today is to simply shine a light on some of the darker, underexposed corners, where dust can collect and dissatisfactions get neglected and ignored.

It’s important to investigate these things, because most people enter partnership and engagement activities bringing their best selves and energies, looking to make change, looking to be heard and seen, wanting to makes sense of their own experiences, and ultimately, just wanting to make things better for others.

But unfortunately, many people eventually just drift away quietly, because they feel ineffectual at best, exploited and retraumatized at worst. Research partnerships undertaken with communities and by extension, people with lived experience, are sites of complex relationships, power dynamics, vested interests, and in some cases, especially in healthcare and community services, with really high personal stakes. To me, bringing critical reflexivity to any space is to take it seriously.

So what do we do about all this?  Many of these issues won’t be easily resolved because honestly, some of them are just what happens when a diverse group of people work together. So things need to be navigated and agreed upon. But maybe there are some ways to minimize harm and maybe set ourselves up for more productive collaborations. 

As I perused the list of things I’ve talked about today I tried to find some threads of simple but practical advice. Some tools for navigating these complex dynamics without entirely throwing out the baby with bathwater, so to speak. 

Strive for more than affect

“Affect” – bit of a fancy word for… feelings – “affect” can be described as the mind state we enter in response to emotions. So to me, it’s that satisfying rush of good vibes when we feel connected to other people. It’s the cathartic resonance when we hear stories of overcoming. Listening to someone’s moving experience can shift something inside us and that’s not nothing.

But what I hear time and again, especially from community activists, is that feeling something is not action. As a way to make change it’s entirely insufficient, and in fact, our satisfied feelings can sometimes distract us from recognizing when nothing has in fact changed or moved forward at all.  

Isabel Jordan is a Patient Partnership advocate who talks about the distinction between ‘feeling included’ and ‘being included’ – I think this is relatable for most people – we know the difference, right?  We might feel included because we’re given a name tag and we got to introduce ourselves and share stories – but being included would mean our contributions are expected, accounted for, potentially remunerated, and integrated into the project outputs.

No virtue-signalling

In addition to ‘affect’ there’s another red flag which I think compromises partnership: virtue-signalling, which is commonly defined as the conspicuous and often disingenuous effort to display how good a person or organization is.

There’s a kind of moral virtuousness in including people with lived experience, or communities who experience marginalization or disadvantage – it’s good messaging when we do these things. If that’s all it is, it’s also potentially exploitative and may cause more harm than good.

My colleague on the podcast Emily – she does engagement consulting – she often starts discussions by asking: if you couldn’t tell anybody about this partnership, would you still do it? Or what parts would you still do? What is the inherent value of this work beyond satisfying your funders or having a nice press release? 

Be clear and transparent

And as a final takeaway – super brief but maybe the most important: be clear and transparent – about your goals, ambitions, constraints. All parties should know for themselves and be willing to state why they’re involved and what they’re hoping to get out of the project – beyond nice feelings and checkboxes.

CONCLUSION

Partnered research can be exciting and rewarding, no question.  But there are some problematic underpinnings. Because research partnerships tend to be institution-led, and will inevitably service institutional agendas, and the benefits of partnership don’t necessarily reach the people or communities the research is supposed to be serving. Or, the benefits may not be so great if you factor in some of the potential consequences, like draining community of resources or reinforcing the status quo.  

I appreciate that as you go about your business, looking at partnership critically or reflexively may not be a priority. There’s just too much to do.  And I agree – it’s hard to be productive if you’re just too self-aware! That applies to many contexts!

But I invite you to contemplate the value of “problematizing”, that thing that social scientists do really well – where we can take something so obvious and simple and seek to reveal its underlying complexity – as we continually critically examine our own position within the scene being studied.

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 blind spots, misperceptions, or ways in which we are actually causing harm to the very people and communities we’re trying to support and whose voices we’re trying to amplify. 

And with that, I will close here, and say thank you so very much, for your time and attention.

 

Jennifer

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